IMPACT of HIV and AIDS in TAMIL NADU,

Transcription

1 Socio-Economic IMPACT of HIV and AIDS in TAMIL NADU, India

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3 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India Basanta K Pradhan Ramamani Sundar Geetha Natesh

4 United Nations Development Programme, 2006 All rights are reserved. The document may, however, be freely reviewed, quoted, reproduced or translated, in part or in full, provided the source is acknowledged. The document may not be sold or used in conjunction with commercial purposes without prior written approval from UNDP. The views expressed in documents by named authors are solely the responsibility of those authors. The analysis and policy recommendations of this Report do not necessarily represent the views of the United Nations Development Programme, its Executive Board or its Member States. Edited and designed by New Concept Information Systems Pvt. Ltd., New Delhi

5 Study Team Core Research Team Basanta K. Pradhan : Chief Economist and Project Director Ramamani Sundar : Senior Consultant and Project Coordinator Geetha Natesh : Consultant and Project Coordinator Consultant Sampurna Singh : Consultant Project Review Committee Suman Bery : Director-General Abusaleh Shariff : Chief Economist Field Coordinators T. K. Krishnan Computer Programming J. M. Chawla Technical Support Bijay Chouhan iii

6 Acknowledgements This report would not have been possible without the encouragement, cooperation, feedback and inputs of many people. First and foremost, The National Council of Applied Economic Research (NCAER) would like to thank Ms. K. Sujatha Rao, Additional Secretary & Director-General, National AIDS Control Organisation and Dr. N.S. Dharamshaktu, former Additional Project Director (Technical), National AIDS Control Organisation. We would also like to thank Smt. Supriya Sahu, the current Project Director and Shri S. Vijaya Kumar, IAS, former Project Director, Tamil Nadu State AIDS Control Society (TNSACS) without whose unconditional support in organising the data collection process, the field work would not have been completed on time. At the United Nations Development Programme, New Delhi we would like to thank Dr. Maxine Olson, UNDP Resident Representative and UN Resident Co-ordinator for her leadership and guidance. We would especially like to acknowledge the continuous advice and inputs from Ms. Alka Narang, Head, HIV and Development Unit, Dr. Hari Mohan, National Programme Officer and Ms. Sabrina Sidhu, Research Associate. The study would not be of the same quality if it wasn t for the time and energy invested in the field research by the investigators and the researchers. Finally, we would like to thank all the respondents who shared the information without any hesitation. Their contributions made this study rich and unique. iv Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

7 Contents Abbreviations Executive Summary xi xii CHAPTER 1 Introduction 1.1 Background HIV and AIDS scenario in Tamil Nadu Objectives of the present study 7 CHAPTER 2 Data and Methodology 2.1 Sample size Qualitative techniques 17 CHAPTER 3 Profile of the Sample Households and PLWHA 3.1 Background characteristics of head of sample households Profile of sample PLWHA 26 CHAPTER 4 Impact of HIV status on Income and Employment in India 4.1 Income and its distribution Work force participation rate among HIV and non-hiv households in the sample Change of job/loss of employment of self and caregiver Loss of income of PLWHA and the caregiver Support from employer Observations 46 CHAPTER 5 Level and Pattern of Consumption and Savings of the Households 5.1 Consumption patterns Household savings Coping mechanism Poverty Observations 72 Executive Summary Contents v

8 CHAPTER 6 Impact of HIV and AIDS on the Education of Children 6.1 Ever and current enrolment rates Dropout rates and number of years of schooling Ever and current enrolment rates by household Income Ever and current enrolment rates by level of education of household head Type of school attended School attendance Reasons for discontinuation of schooling Observations 84 CHAPTER 7 Impact of HIV and AIDS on Health Status Prevalence rate of illness Details about non-hospitalised illness episodes Details about hospitalisation cases Observations 103 CHAPTER 8 Stigma, Discrimination and Coping Mechanism 8.1 Introduction Discovering HIV status Reaction to HIV status Disclosure of HIV status Migration Stigma and discrimination faced by PLWHA Knowledge and awareness about HIV and AIDS and attitude towards PLWHA Observations 121 CHAPTER 9 Conclusion and Policy Implications 123 Annexure Annexure I Summary of Focus Group Discussions 131 Annexure II Case Studies 137 References 140 List of tables Table 1.1 HIV prevalence rates for high-prevalence states Table 1.2 Number of AIDS cases in Tamil Nadu reported upto December Table 1.3 Source of infection in Tamil Nadu upto vi Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

9 Table 1.4 Observed HIV-prevalence levels in Tamil Nadu ( ) 6 Table 2.1 Distribution of sample HIV households by place of interview 15 Table 2.2 District-wise distribution of sample HIV households 16 Table 3.1 Distribution of head of sample households by caste 21 Table 3.2 Occupation and level of education of heads of the households 22 Table 3.3 Table 3.4 Table 3.5 Distribution of sample households by household income categories 23 Distribution of sample households by the availability of basic amenities 24 Distribution of sample households by ownership of assets and other consumer durables 25 Table 3.6 Profile of sample PLWHA 26 Table 3.7 Current and the past occupation of the sample PLWHA 27 Table 4.1 Table 4.2 Table 4.3 Table 4.4 Table 4.5 Distribution of sample households, population and income by occupation 32 Distribution of households and their share in income by income categories in the sample 33 Average household and per capita annual income by occupational categories in the sample 34 Households by number of earners and annual household income in the sample 35 Work force participation rate by age group and place of residence (per 100) 37 Table 4.6 Change in job due to HIV and AIDS 38 Table 4.7 Table 4.8 Change in occupational distribution due to HIV and AIDS (age group 18-60) 39 Change in sectoral distribution due to HIV and AIDS (age group 18-60) 39 Table 4.9 The situation with respect to provision of care to PLWHA 40 Table 4.10 Occupational distribution of caregiver 40 Table 4.11 Table 4.12 Table 4.13 Table 4.14 Loss of income of workers with HIV if currently working by occupational groups 41 Loss of income of workers with HIV if currently not working by occupational groups 43 Loss of income of caregiver if currently working by occupational groups 44 Average number of work days lost due to leave/absence from work of PLWHA 45 Table 5.1 Share of expenditure on some of the major items 49 Contents vii

10 Table 5.2 Average per capita per month expenditure on some major items 50 Table 5.3 Table 5.4 Table 5.5 Table 5.6 Table 5.7 Table 5.8 Average per household consumption expenditure by occupation groups 51 Per capita consumption expenditure on various items by occupation groups 53 Distribution of consumption expenditure cross broad groups of consumption items by occupation 56 Distribution of consumption expenditure by income groups and items of expenditure 58 Average household annual consumption expenditure by income group 61 Per capita item-wise annual consumption expenditure by income group 63 Table 5.9 Average household savings by place of residence 65 Table 5.10 Distribution of savers and non-savers 66 Table 5.11 Average household and per capita savings by level of income 67 Table 5.12 Table 5.13 Liquidation of assets or borrowings to cope with financial burden of HIV and AIDS after being tested positive 67 Liquidation of assets or borrowings to cope with financial burden of HIV and AIDS after being tested positive by occupational classes 68 Table 5.14 Borrowing in last one year 69 Table 5.15 Distribution of households by income poverty in the sample 70 Table 5.16 Consumption poverty in the sample 71 Table 5.17 Income poverty in the sample group by occupational categories 72 Table 5.18 Table 6.1 Table 6.2 Table 6.3 Table 6.4 Table 6.5 Table 6.6 Consumption poverty in the sample group by occupational categories 73 Ever and current enrolment of children in HIV and non-hiv households 78 Dropout rates and number of years of schooling completed by dropout children 79 Ever & current enrolment rates for children by annual household income categories 80 Ever and current enrolment rates for children by level of education of household head 81 Distribution of currently enrolled children by type of school attended 82 School attendance of children In the last academic year by type of household 83 viii Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

11 Table 7.1 Table 7.2 Table 7.3 Table 7.4 Table 7.5 Table 7.6 Table 7.7 Table 7.8 Table 7.9 Table 7.10 Table 7.11 Table 7.12 Table 7.13 Table 7.14 Table 7.15 Table 7.16 Table 7.17 Table 7.18 Table 7.19 Prevalence rate of illness for the one-month reference period by type of households and age and sex 90 Reported number of hospitalisation cases in the reference year by type of households and sex 90 Prevalence rate of illness and hospitalisation for PLWHA by stage of infection and number of years back HIV status detected 91 Frequency of OIs reported by PLWHA by stage of HIV infection(non-hospitalised illness episodes) 92 Distribution of PLWHA reporting prolonged illness as a reason for going in for HIV test 94 Distribution of non-hospitalised illness episodes by nature of illness reported 94 Illness episodes receiving no treatment and reasons for no treatment for PLWHA 95 Average number of days ill, bedridden and not going to work during each non-hospitalised illness episode in the last one month 96 Distribution of non-hospitalised illness episodes by source of treatment for male and female PLWHA 97 Distribution of non-hospitalised illness episodes by source of treatment and by annual household income groups 97 Expenditure incurred by PLWHA for treatment of non-hospitalised illness episodes by source of treatment 98 Frequency of hospitalisation reported by PLWHA by stage of HIV infection and number of years back HIV was detected 99 Distribution of hospitalisation cases by nature of illness suffered by HIV-positive men and women and number of days hospitalised. 100 Distribution of hospitalisation cases by source of treatment for PLWHA by rural/urban break-up 100 Distribution of hospitalisation cases by source of treatment and by annual household income groups 101 Average expenditure incurred per hospitalisation case by PLWHA by source of treatment 101 Expenditure incurred per hospitalisation case by PLWHA by source of treatment and annual household income groups 102 Distribution of hospitalisation cases by source of financing hospitalisation and annual household income groups 103 Distribution of hospitalisation cases by source of financing hospitalisation and stage of infection 103 Table 8.1 Distribution of PLWHA by ways of discovering their HIV status 108 Contents ix

12 Table 8.2 Distribution of sample PLWHA by reaction to their HIV status 109 Table 8.3 Distribution of PLWHA by coping mechanism adopted to get over initial shock/disbelief etc 111 Table 8.4 Distribution of PLWHA by disclosure of status 111 Table 8.5 Distribution of PLWHA reporting change of residence and reasons 112 Table 8.6 Stigma and discrimination faced by PLWHA in the community/ neighbourhood by sex 113 Table 8.7 Distribution of the PLWHA according to their work status 114 Table 8.8 Distribution of PLWHA by disclosure of status and discrimination faced at workplace 114 Table 8.9 Distribution of PLWHA reporting discrimination at health facilities 115 Table 8.10 Distribution of respondents according to their knowledge and awareness about HIV and AIDS 117 Table 8.11 Distribution of respondents by exposure to media 118 Table 8.12 Table 8.13 Table 8.14 Distribution of respondents according to their knowledge about modes of transmission of HIV and AIDS 119 Distribution of respondents according to their knowledge about usage of condom 120 Distribution of respondents according to their attitude towards PLWHA 120 Appendix - I Background information on Tamil Nadu 8 Appendix - II Population growth rate in Tamil Nadu 9 x Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

13 Abbreviations AIDS ANC APAC BSS CSW FGD GDP HIV ICMR IHS NACO NCAER NGOs OI PLWHA PPTCT STD STI TNSACS UNDP USAID VCTC VHS Acquired Immuno Deficiency Syndrome Ante Natal Clinic AIDS Prevention and Control Project Behavioural Surveillance Survey Commercial Sex Worker Focus Group Discussion Gross Domestic Product Human Immuno-deficiency Virus Indian Council of Medical Research Institute of Health Systems National AIDS Control Organisation National Council of Applied Economic Research Non Governmental Organisations Opportunistic Infection Persons Living with HIV and AIDS Prevention of Parent to Child Transmission Sexually Transmitted Diseases Sexually Transmitted Infections Tamil Nadu State AIDS Control Society United Nations Development Programme United States Agency for International Development Voluntary Counselling and Testing Centre Voluntary Health Services Abbreviations xi

14 Executive Summary Introduction AIDS has emerged as a serious challenge for the developing as well as the developed world. Although India remains a low prevalence country with overall HIV prevalence of 0.91 percent, it has million people living with HIV and AIDS (PLWHA)(2005). At this critical stage of the country s response to the epidemic, a study on the Socio-Economic Impact of HIV and AIDS was undertaken by National Council of Applied Economic Research (NCAER) in the six HIV highprevalence states of India, namely Andhra Pradesh, Karnataka, Maharashtra, Manipur, Nagaland and Tamil Nadu. The study was carried out with support from UNDP and National AIDS Control Organisation (NACO). Objectives The objective of the study was to analyse the nature and type of socio-economic impact of HIV and AIDS on affected individuals and their households. The focus of the study is on the impact of HIV and AIDS on household income and employment, level and pattern of consumption, savings and borrowings, education of children, health status including household expenditure on treatment. The stigma and discrimination on the affected individuals and the families are subjected to is also reflected in this stydy. The study is based on a p r i m a r y s u r vey c o n d u c t e d by NCAER. Data and methodology In the state of Tamil Nadu, a field survey was conducted during the period of December 2004 to February Both HIV and non-hiv (control group) households were surveyed and their socio-economic characteristics, pattern of household expenditure and savings, prevalence of morbidity and differences in enrolment and dropout rates of school going children compared. The number of HIV households surveyed was 410, comprising 223 rural and 187 urban households. Apart from the capital city of Chennai, the survey covered five more districts, namely Theni, Namakkal, Thiruchirapalli, Erode and Tirunelvelli. This was done so that HIV high-prevalence districts from different geographic regions of the state could be covered. The Tamil Nadu State AIDS Control Society ( TNSACS) suggested that selected VCTC/PPTCT counsellors canvass questionnaires and two trained counsellors one man and one woman were appointed as field investigators. These counsellors were advised to select the sample from a diverse socio-economic profile of households. However, in spite of best efforts, these field investigators could not get access to upper middle class and rich HIV households. The samples were drawn mainly from government general hospitals and TB hospitals, care and support homes, drop-in centres run by NGOs, Network of Positive People etc. xii Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

15 which mostly cater to poor/low-income households. An attempt was made to select PLWHA from both sexes at different stages of the infection. In households with more than one HIV-positive person, a maximum of two adult PLWHA, mostly husband and wife, were interviewed. For every HIV household that was surveyed in a village/urban block, approximately three non-hiv households belonging to similar economic strata were interviewed. The survey of non-hiv households commenced immediately after completion of the survey of PLWHA. The households were matched first on the basis of broad income category of the HIV households. At the second stage, the occupational group of the head of the household was matched from within each income category. Two sets of structured questionnaires were used for the household survey one for HIV and another for non-hivhouseholds. These two questionnaires had some common sections as well as special sections. In order to supplement the findings of the quantitative survey, qualitative techniques like case studies and focus group discussions were also used. Two case studies were conducted in Tamil Nadu, and the Focus Group Discussion was conducted with the members of the Cambam Network of Positive People in the Theni district of the state. Profile of the sample It was found that nearly 79 percent of both HIV and non-hiv household heads were in the age group of years. Though the level of education of the household heads was poor, it seemed comparatively better in non- HIV households, with the percentage of illiterates in HIV households being twice that of the percentage in non-hiv households. The average annual income of non-hiv households (Rs. 48,878) was higher than that of the HIV households (Rs. 39,298) selected, though efforts were made to capture economically similar placed households. Nearly 40 percent of the rural HIV households selected had an annual income of less than Rs. 20,000. The average income of the urban households was found to higher than that of the rural in both categories of households. The availability of basic amenities, ownership of house/flats and consumer durables in the households indicated a low economic status of the sample households. Most of the PLWHA were in the age group of years, with nearly 60 percent of the women between years and 56 percent of the men between years. Nearly 76 percent of the men and 48 percent of the women were married at the time of the survey. Percentage of men separated/divorced/abandoned was 3.7, while for women it was 6.7. Three percent of the men were widowers and 38 percent of the women, widows. The sample PLWHA was poorly educated. Nearly 30 percent men and 28 percent women were wage earners while 15 percent men and 17 percent women were salary earners. About 19 percent were engaged in the transport sector, which is considered one of the high HIV-risk occupational sectors. While about 17 percent men were unemployed, 33 percent of the women were not found to be engaged in any income earning activity. Impact on employment and income Analysis of the average annual household income based on occupations shows the agricultural wage earners with the least and the salaried with the highest Nearly 40 percent of the rural HIV households selected had an annual income of less than Rs. 20,000 Executive Summary xiii

16 The work force participation rate regarding age groups was higher in HIV households income in both HIV and non-hiv categories. Except for self-employed nonagriculturists, the average income of HIV households in different occupational groups is less than that of non-hiv households. Inspite of a difference in the average annual income of HIV and non- HIV households, the per capita income of the urban samples in both households is nearly the same. Analysis revealed that the work force participation rate among the different age groups was higher in HIV households. The work force participation was lower in non-hiv among all age groups-children of 0-14 years, years as well as people above 60 years. It was also observed that the workforce participation rate was the highest for PLWHA in the years age group. Of the 410 HIV households in the sample, 475 PLWHA in the age group of years were interviewed in detail. While 314 reported being currently employed, 43 had changed their jobs after being detected positive. However, only seven of them had received benefits at the time of changing the job with the average benefit being Rs. 16,571. The prevalence of HIV and AIDS is higher among working members of the HIV households across all occupational groups. This was seen in the occupational and sectoral pattern of employment of PLWHA before and after being detected positive. Also, the percentage of the unemployed among men increased from 1 percent before the test to 17 percent after the test. Among women, this percentage increased from 2.4 percent to 5.3 percent. Of the 475 PLWHA that were interviewed, 123 (32.7 %) reported a need to be looked after, and 128 people were involved in taking care of them of which 74 were employed. However, no one had to give up his or her job to attend to the HIV affected person. It was reported by 164 PLWHA employed that for the one year before the interview, there was loss of income due to absence from work because of ill health. The average income lost was Rs. 4,214. Loss of some fringe benefits and additional amount spent on hired labourers was also reported. With these, the income lost as a percentage of current household income was Estimates were made of the loss of income to those forced to withdraw from work on being detected HIV-positive. The number of such PLWHA was 53 and they were spread over all occupational groups except cultivators and suchlike. The average loss of income was Rs. 24,095 per person. While the average income lost as a percentage of current household income amounted to 84.2 percent, there was a great variance among the different categories of occupation. Further the loss of income of the caregivers currently employed was estimated at 7.09 percent of current household income. Impact on consumption, savings and borrowings Analysis of the share of expenditure of both households revealed the proportion of expenditure of HIV households on all items other than healthcare and rent was less than that of the non-hiv households. The proportion of expenditure on medical care by HIV households was found to be a little more than double than non-hiv households. The salaried class reported maximum average consumption expenditure between both HIV and non-hiv households. However, on the whole, average per capita per month expenditure of the HIV households was slightly more than that of the non-hiv households. This was in spite of their xiv Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

17 per capita income being lesser than the non-hiv households. The HIV households had no savings with the average annual household savings of HIV households being Rs. -1,082, while the non-hiv households had savings of Rs. 4,329. The non-hiv households had positive savings under all the different kinds of savings considered, except that of agricultural land. The HIV households had positive savings only under cash/ bank deposits and shares, etc, with a higher portion of the saving in the form of cash/bank deposits. The percentage of zero savers and positive savers was higher in non-hiv households, while negative savers saw a higher percentage in HIV households. Analysis of the per capita saving of different income groups, revealed a negative rate of savings for the three lower income groups in HIV households with percent for the lowest household income group (upto Rs. 20,000). The rate was 0.49 percent for the same group under non-hiv households, and no group under non- HIV households had negative savings. The rate of savings of non-hiv households was found to be higher as compared to their HIV counterparts in all the different income groups. More than half the HIV households reported to have either borrowed or liquidated assets to cope with the financial burden/loss of income after a family member tested positive. The percentage of such households was highest for the lowest income group (58.3%), going down with the increasing level of income of the households. The average amount generated was the highest for the highest income group. For the households that borrowed in the year before the survey, the percentage of average borrowing per household was higher for HIV households. The borrowing per household was high for HIV households in the three lower income groups. This was higher for non- HIV households with income above Rs. 41,001. Households surveyed on the basis of income poverty, show the percentage of households below poverty line was higher in HIV households (26% of HIV as against 9% of non-hiv households). The average household income of non-hiv households was found to be more than that of HIV households. The consumption poverty in the sample shows the HIV households above poverty line have bigger per capita expenditure than similar non-hiv households. However, for households below poverty line, consumption expenditure of HIV households was lesser than that of non- HIV households. Impact on education of children The survey of the impact on education of children captured 302 children 148 boys and 154 girls from HIV households and 659 children 351 boys and 308 girls from non-hiv households in the age group of 6-14 years, which corresponds to class I-VIII. In this group, the ever enrolled percentages were similar in children from both types of households. There was also no noticeable difference between the enrolment rate of boys and girls. However, the difference between the ever enrolled and currently enrolled rates was much higher in the case of children from HIV households; especially in case of girls. This indicates a higher dropout rate for the children of HIV households, especially for girls. In the age group of years corresponding to class IX to XII, the number of children from HIV and non-hiv households were 59 and 431 respectively. While the ever enrolment Households surveyed on the basis of income poverty, show the percentage of households below poverty line was higher in HIV households Executive Summary xv

18 In the HIV households, both the rate of illness and the number of hospitalisation cases was much less for women than for men was 100 percent for all children from both households, the current enrolment rates were less for both HIV and non-hiv households. The rates for children from HIV households were the lesser of two. While no gender difference was seen in the current enrolment rates of children from non-hiv households; the rate was lesser for girls than boys in case of HIV households. Of the 15 HIV-positive children in the age group of 6-14 years, 14 were enrolled in school. One boy however, could not get admission because of his HIV status. One boy and two girls dropped out; the boy to look after his sick parents and the girls, as there was no separate school for girls. Impact on health status and household expenditure From the sample of 410 HIV and 1,203 non-hiv households, the total number of persons in the two households worked out to 1,520 and 4,937 respectively. The prevalence rate of non-hospitalised illness was calculated based on the number of illnesses reported for all the members of the households. This was during one month before the interview, and included acute and chronic illnesses. The calculation was also based on the number of hospitalisation cases reported during the one year preceding the date of interview. The burden of illness, whether hospitalised or non-hospitalised, was found to be much higher in the HIV households. On comparision with reference to age groups, in the age group of 15-59, which contains most of the HIV sample, the burden on HIV households was nearly four times that on non-hiv households in respect of both nonhospitalised and hospitalised illnesses. In the HIV households, both the rate of illness and the number of hospitalisation cases was much less for women than for men. The prevalence rate of both nonhospitalised and hospitalised illnesses calculated stage-wise showed them as increasing with the increase in the stage of infection. The survey gathered details about various non-hospitalised illnesses suffered by the interviewed PLWHA during the month prior to the date of interview. These details included the nature of illnesses suffered, duration of each illness episode, number of days treatment was taken, type of treatment taken and the expenditure incurred on the treatment of each illness episode. Fever was the most highly reported illness (33%), followed by respiratory infections, loose motion, diarrhoea, TB, skin diseases, headache, body ache and weakness. While six percent of the illness episodes went untreated in the case of men, the percentage was higher at 10.6 percent for women. Also, in the case of men, while 90 percent of untreated episodes were not considered serious, financial constraint did not seem a reason for not taking treatment. However, in the case of women, while 74 percent of untreated episodes were not considered serious, 13 percent went untreated due to financial constraints. Treatment was taken from private health facilities in nearly 54 percent of the nonhospitalised illness episodes. In 35 percent of the episodes; government facilities were responsible for the treatment and in about 10 percent of the episodes, treatment was taken from NGOs. A higher percentage of women took treatment from government hospitals and NGOs as compared to men. While the average expenditure per episode was the least in case of treatment from NGOs (Rs. 30 per episode), it was the highest for treatment from private doctors/clinics (Rs. 556 per episode). xvi Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

19 The percentage of PLWHA reporting hospitalisation during the period since testing positive was almost the same as that during the one year period before the survey. However, a higher percentage of men (66%) reported hospitalisation compared to women (38%) during both these periods. The percentage of PLWHA hospitalised as well as the average number of times they were hospitalised increased with advanced stage of infection; however, no instance of frequent or continuous hospitalisation was reported. During the last one year reference period; fever, loose motion/diarrhoea and tuberculosis were the common health problems for which PLWHA were hospitalised. While nearly 60 percent sought treatment from government hospitals, about 25 percent went to private health facilities and the rest fell back on NGOs and charitable trusts. T h e a v e r a g e e x p e n d i t u r e p e r hospitalisation was the highest for treatment from private institutions (Rs. 4,119 per hospitalisation case) and lowest for treatment from NGOs/ charitable trusts (Rs. 363 per case). Overall, the average expenditure per hospitalisation worked out to Rs. 1,616. The expenditure was lesser in the case of women as compared to men in spite of the source of treatment. In 69 percent of the hospitalisation cases, the households had to resort to borrowings and liquidation of assets to meet the hospitalisation expenses. Stigma and discrimination A high percentage of men (64%) discovered their HIV status after prolonged illness while 64 percent of the sample women discovered it after voluntary testing. Those women who went in for voluntary testing did so after discovering the HIV status of their husbands. The main mode of infection was reported as heterosexual contact. Although a high percentage of the PLWHA revealed their positive status (69% of men and 88% of women) to their spouses immediately, nearly 3.5 percent of men and 5 percent women have not revealed it. Nearly 70 percent of men and 56 percent of women have not disclosed their status in the community, probably fearing discrimination. Around 20 percent of the households changed their residence after one of their family members was reported positive. The prominent reasons reported for this were inability to afford the earlier place of residence, search of employment, reasons of anonymity, being asked to vacate because of the HIV status and for seeking medical treatment. Though in most of the cases (66% of men and 58% of women) the families are presently supportive of the PLWHA, the Focus Group Discussions reveal incidences of discrimination in the family, especially in the case of women. Many of the widows were living with their parents after being thrown out of their in-laws house. Although a high percentage had not disclosed their status in the community, some of the PLWHA had reported discrimination by the community. Reports of neglect and isolation, verbal abuse, social boycott and their children not being allowed to play with others were found. 77 percent of the currently employed PLWHA have not disclosed their status to their employer, mostly out of fear of losing their jobs. Only 17 percent of men and 11 percent of women who had sought treatment in a health facility after testing HIVpositive had reported experiencing 77 percent of the currently employed PLWHA have not disclosed their status to their employer, mostly out of fear of losing their jobs Executive Summary xvii

20 discrimination. This discrimination was in the form of refusal of medical assistance, being treated badly, and, in a small percentage of cases, denial of admission. During the FGD, the participants narrated many incidents of denial of admission, refusal of medical treatment, etc. Through the sur vey of non-hiv households, 559 men and 643 women in the age group of were interviewed to gauge their level of knowledge and awareness about HIV and AIDS. Barring a few, nearly all of them had heard about HIV and AIDS. The sources of information were mostly television and radio, as both the mediums are popular with the people. However, knowledge regarding different aspects of the infection was quite low, with women being less knowledgeable than men. For instance, only 55 percent of men and 34 percent of women knew the linkage between HIV, AIDS and STI. There were also misconceptions about HIV and AIDS. The percentage of people reporting right use of condoms was also quite low. While a higher percentage of women knew about usage of condoms to avoid pregnancy and for STI protection, a higher percentage of men knew about its use in HIV and AIDS prevention. It was also found that respondents had a negative attitude towards PLWHA with women discriminating against them to a greater extent.

21 Introduction

22 2 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

23 Chapter 1 Introduction 1.1 Background Tamil Nadu, the southernmost state of India, nestles in the Indian peninsula between the Bay of Bengal in the East, the Indian Ocean in the South and the Western Ghats and Arabian Sea in the West. In the North and West, the state adjoins Karnataka, Andhra Pradesh and Kerala. Traditionally, the state has been divided into five physiographic divisions viz. Kurinji (mountainous area), Mullai (forest), Palai (arid zone), Marudham (fertile region) and Neidhai (coastal region). The state has a linguistic and cultural history that dates back about 6,000 years. The present state of Tamil Nadu was part of the Madras Presidency during the period of British rule in India. The state of Madras was formed during the reorganisation of states on a linguistic basis in It was renamed Tamil Nadu in Tamil is the official language and Chennai, the capital city. The state has been divided into 30 districts. Some of the important statistical data concerning the state are given in Appendix-I. In terms of population, Tamil Nadu is the seventh largest state in India. The population of the state is million, representing 6.04 percent of India s population. The decadal growth rate in population has decreased considerably from 17.5 percent in to 11.2 percent in , which is half the decadal percentage increase for the country as a whole (21.3%) in Except for Kerala, Tamil Nadu recorded the lowest population growth rate in among all the states and Union Territories of India. However, the population density at 478/ km 2 is more than that of all India (325/ km 2 ). The increase in population density as seen in the state from 1971 (Appendix- II) indicates a pressure on the land and other major resources. Tamil Nadu has become one of the most urbanised states in the country. The percentage of urban population in the state is 44 as against 27.8 for the country. Tamil Nadu is one of India s more economically and industrially developed states. Tamil Nadu s economy has been changing rapidly from a predominantly agricultural economy into an industrial economy. The per capita GDP ( ) of the state was Rs. 23,414 as against Rs. 22,007 for India as a whole. According to the Planning Commission s estimates, the performance of Tamil Nadu on poverty reduction has been above India s average in the 1990s. Tamil Nadu s poverty head count has reduced from 35.5 percent in to 21.1 percent in Introduction 3

24 Tamil Nadu has been identified as one of the six high-hiv prevalence states The state is also one of the educationally advanced states in the country. According to the 2001 Census, the literacy rate among the population aged seven and above was 73 percent compared with 65 percent for India as a whole. Although female literacy has grown more rapidly than male literacy during , the female literacy rate continues to be lower than male literacy levels in the state. However, the gap between male and female literacy rates in the state is smaller than the gap for all of India. T h e r e h a s b e e n a t r e m e n d o u s improvement in the performance of the state measured by some of the health indicators. The life expectancy at birth rate ( ) is higher than all India levels, while the Infant Mortality Rate (IMR) (2002) is lower than all India levels. The birth rate and death rate (2002) are also lesser than all India levels. In fact the natural growth rate of 10.7 per 1,000 of the population was the lowest among the major states in India. 1.2 HIV and AIDS scenario in Tamil Nadu the Christian Medical College Hospital at Vellore, and Mumbai in Maharashtra recorded these. This was possible because of the HIV Surveillance System initiated by the government through the Indian Council of Medical Research (ICMR). This initiative was taken a few months before it was detected, following reports about AIDS in the west. Tamil Nadu has been identified as one of the six high HIV prevalence states (more than 1 percent of antenatal mothers and 5 percent STD patients were detected HIVpositive) as per the state wise prevalence of HIV in It can however be seen from Table 1.1 given below that the rates in ANC clinics have come down to 0.50 for Tamil Nadu in According to the monthly update on AIDS from NACO, out of the total 1,11,608 AIDS cases detected in the country till 31st July 2005, Tamil Nadu accounts for 52,036 cases, which makes it 46.6 percent of the total number. The district-wise break-up of the cases for the period upto December 2004, which accounts for 48,180 of the cases is given in Table 1.2 below. The first HIV infection and AIDS cases in India were detected in Tamil Nadu and Maharashtra in The Madras Medical College Hospital at Chennai, States Table 1.1 HIV prevalence rates for highprevalence states 2005 STD clinics ANC clinics Andhra Pradesh Karnataka Maharashtra Tamil Nadu Manipur Nagaland The maximum number of AIDS cases have been reported from the state capital itself. The other districts which have reported large number of AIDS cases are Namakkal, Salem, Vellore, Dindigul, Trichy etc. A heterosexual promiscuous lifestyle is the main source of HIV infection as seen from Table 1.3 below. For more than 90 percent of the cases, the heterosexual route has been reported as the mode of transmission of the virus. AIDS awareness and control have received special attention in the state since the first case of HIV in the country was reported here in A state-level AIDS Control Society was formed in 4 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

25 Table 1.2 Number of AIDS cases in Tamil Nadu reported upto December 2004 S. No. Name of district Upto the month Male Female Total 1 Chennai 7,581 2,737 10,318 2 Thiruvallur ,361 3 Kanchipuram Vellore 1, ,332 5 Thiruvannamalai ,274 6 Vilupuram 1, ,051 7 Cuddalore 1, ,817 8 Dharmapuri 1, ,432 9 Krishnagiri Salem 1, , Namakkal 1, , Erode 1, , Coimbatore The Nilgiris Perambalur , Trichy 1, , Karur Pudukottai Thanjavur , Thiruvarur Nagapattinam Dindigul 1, , Madurai 1, , Theni Sivagangai Virudhunagar Ramanathapuram Thirunelveli Thoothukudi Kanyakumari Addresses not known Other States 4,295 2,510 6,805 Total 34,020 14,160 48,180 * Source: AIDS Cases Surveillance Report, Tamil Nadu State AIDS Control Society 1994, the first of its kind. The STD/ HIV/ AIDS Preventive Measures in the state are bolstered by the AIDS Prevention and Control Project (APAC) promoted by the Government of India, the US Agency for International Development (USAID) and the Voluntary Health Services (VHS), Chennai. The objective Introduction 5

26 Table 1.3 Source of infection in Tamil Nadu upto 2004 Heterosexual promiscuity Number of Percentage cases 45, Homosexual Peri-natal 1, transmission Blood and blood products Injectable drug users Others Total 47, *Source: AIDS Cases Surveillance Report, Tamil Nadu State AIDS Control Society is to control this problem effectively as well as also to raise awareness on HIV infection and AIDS among all sections of the population. A study on community prevalence of STDs in the state, undertaken in 1998, placed the prevalence of any STD condition in Tamil Nadu at 15.8 percent and the overall prevalence of HIV in the community at 1.8 percent, with wide inter-district variation in STD/HIV status. The findings suggest a higher prevalence of HIV in rural areas than in urban areas and also among women rather than men. The age group at risk for any STD was years. The major element in AIDS control strategy in the state is awareness creation and social immunisation. The focus has now shifted from mass awareness towards inter-personal and behavioural change communication. High-risk groups are identified and targeted, and interventions are made by establishing partnerships with NGOs. Supply of safe and tested blood is being ensured. Condom usage is promoted; students of classes IX and X are covered for awareness raising and immunisation through the School AIDS Education Programme, now operative in 1420 schools in the state. Voluntary Counselling and Testing Centres have been established in 11 places to screen the HIV status of individuals and to offer immunisation services. A surveillance system is also in place to assess the trend in the spread of HIV infection. Although the number of AIDS cases in Tamil Nadu is very high, the trend in ANC clinics in the state shows that the prevalence rate is coming down. From a rate of 1 percent in 1998, it has come down to 0.50 percent in Similarly, the prevalence rate of HIV at the STD clinics has steadily declined since It has come down from 16.8 percent in 2000 to 8.4 percent in Behavioural change among the core transmitter groups is a prerequisite for the slowing down of the epidemic. The main source of evidence for this behavioural change are the findings from Table 1.4 Observed HIV-prevalence levels in Tamil Nadu ( ) (in percentages) Surveillance sites * STD(11) ANC(30) IDU (1) MSM (2) Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

27 four rounds of Behaviour Surveillance Surveys (BSS) conducted by the USAIDfunded AIDS Project and Control (APAC) in Tamil Nadu. For example, condom use among Commercial Sex Workers (CSWs) went up from 56 percent in 1996 to 88 percent in Similarly, condom use during paid sex among transport workers rose from 55 percent in 1996 to 80 percent in 1999 (APAC, 2000). However, the battle against HIV and AIDS has not yet been won in Tamil Nadu; through the first signs of a possibility of slowing down the epidemic have been seen. Given the scarcity of data, even this tentative conclusion must be viewed with caution. It is yet to be seen whether the flattering trend of antenatal HIV prevalence continues in the coming years. 1.3 Objectives of the present study The factors responsible for the highprevalence of HIV in the state clearly indicate that the problem of HIV and AIDS has deep social and economic roots. Hence, its impact reaches far beyond the health sector with severe social and economic consequences. It affects the individual, family and the community at the micro-level and various sectors of the economy at the macro-level. However, it has been found that the economic impact of the HIV epidemic is most significant at the family and community level especially among the poor and marginalised groups rather than at national, macro levels, particularly in South Asia (UNDP, 2003). The present study is an attempt to assess the impact of HIV and AIDS at the level of affected persons and their households. It is hoped that this study will throw some light on specific strategies that are needed to alleviate the problems faced by HIV affected households in a developing country. The objective of this study is to analyse the nature and type of socio-economic impact of HIV and AIDS on the affected individuals and their households in the state of Tamil Nadu. The study focuses on: 1) Impact on household income, consumption and savings 2) Impact on change of job/loss of employment of the HIV affected individuals and of the caregivers 3) Impact on the education of the children of the affected families 4) Effect on the health status of the PLWHA, pattern of morbidity, their health-seeking behaviour and the expenditure incurred by the households on medical treatment of opportunistic infections (OIs) 5) Coping mechanisms adopted by the HIV and AIDS affected families and the availability of social security 6) The social impact on the affected persons and their families, which includes stigma and discrimination faced by PLWHA at various settings; namely, in the neighbourhood, community, and health facilities and at the workplace. The study also documents the overall experiences of the PLWHA with reference to their reaction to their HIV status, discovery and disclosure of HIV status and the attitude of their family towards them. This report is divided into eight chapters and in the following chapter the methodology used for conducting the household survey and the qualitative research methods used for gathering information are discussed. Chapter three presents background characteristics of the sample households and a brief profile of the sample PLWHA who were The objective of this study is to analyse the nature and type of socioeconomic impact of HIV and AIDS on the affected individuals and their households in the state of Tamil Nadu Introduction 7

28 interviewed for the study. A detailed analysis of the pattern of income of HIV and non-hiv households, impact of HIV on income and employment of both the HIV infected and the caregivers of PLWHA is provided in Chapter four. The level and pattern of consumption and savings of the households (both HIV and non-hiv) is dealt with in detail in Chapter five. The presence of an HIV person can affect the education of children due to various reasons. Chapter six attempts to measure the impact of HIV and AIDS on the education of children in terms of school enrolment, reasons for non-enrolment and dropping out, type of school attended and school attendance. The HIV households face tremendous financial burdens due to medical cost of treating the OIs. In Chapter seven, the pattern of morbidity and the health seeking behaviour of the sample PLWHA and the out-of-pocket expenditure incurred on treatment of OIs are discussed. Chapter eight deals with the social stigma attached to HIV and AIDS as the major inhibiting factor in controlling the spread of the infection. It not only tries to capture the magnitude of stigma and discrimination faced by PLWHA in various social settings, but also attempts to assess the knowledge and awareness about the infection among the general population and attitude of people towards PLWHA. Chapter nine gives the major conclusions from the results of the survey along with policy implications. 8 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

29 Appendix - I Appendix II Background information on Tamil Nadu Tamil Nadu All India Population (2001 census) in million , Area (in lakh sq kms.) (2001 census) Number of districts Percentage of urban population Growth rate in population ( ) (%) Literacy rate for population 7+ Total Male Female Gross enrolment rate class I-V ( ) Total Boys Girls Gross enrolment rate class VI-VIII ( ) Total Boys Girls Life expectancy at birth ( ) Male Female Infant mortality rate (2003) Total Male Female Birth rate (2003) Death rate (2003) Total fertility rate (15 49 years) NFHS I ( ) NFHS II ( ) Percentage of population below poverty line ( ) Source: Economic survey , Government of India Handbook of Social Welfare Statistics, NCAER National Family Health Survey, IIPS SRS Bulletin, Registrar General of India, April 2005 Population growth rate in Tamil Nadu: Census year Population density Population (in million) Decadal growth rate ~- 17.5% ~- 15.4% ~- 11.2% Introduction 9

30 10 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

31 Data and Methodology

32 12 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

33 Chapter 2 Data and Methodology As mentioned in Chapter one the main objective of this study is to assess the impact of HIV on infected individuals and their households. The study is based on the household survey conducted by NCAER in all the six HIV high-prevalence states. In the state of Tamil Nadu, the field survey was conducted during the period December 2004 to February Keeping in mind the objectives of the study, NCAER conducted a survey of both HIV and non-hiv households. The purpose of surveying both HIV and non-hiv households (control group) was to compare their socio-economic characteristics, pattern of household expenditure, prevalence of morbidity, differences in enrolment and dropout rates of children and time use pattern of all the household members. In addition, qualitative techniques like case studies and Focus Group Discussions have also been made use of. 2.1 Sample size In each of the high-prevalence states, the survey covered roughly 1600 households, nearly one-fourth of which have PLWHA. Since for a state-level analysis, it was thought that a minimum sample of 400 households would be required, it was decided to draw a sample of 400 HIVpositive households from each of the selected states. This number is large enough considering the difficulties involved in identifying People Living with HIV and AIDS (PLWHA) and their households, and more importantly, securing their consent for interview. The sample was drawn from both rural and urban areas of the states; out of 410 sample HIV households, there were 223 households belonging to rural areas of Tamil Nadu, while 187 households were from urban localities Selection of districts Based on the Sentinel Surveillance Reports of the respective State AIDS Control Societies, the HIV high-prevalence districts in the state of Tamil Nadu were identified and out of these districts, six districts were selected for conducting the survey. Criteria for selection: 1. In every state, the state capital, which also happens to be one of the highprevalence districts, was purposively selected as one of the sample sites. In Tamil Nadu, Chennai was purposively selected and although a primarily urban sample was drawn from the state capital, the survey covered a few rural households surrounding the capital city too. 2. While selecting the districts it was kept in mind to get as much of a geographic spread as possible in Data and Methodology 13

34 Household selections were made with the help of counsellors of the State AIDS Control Societies who are directly in touch with the PLWHA order to get a representative picture of the state. 3. The selection of the districts also depended upon the concentration/ distribution of HIV and AIDS cases. The reason for selecting the districts where the concentration of HIV and AIDS cases was more was again to make the survey more cost-effective and less time-consuming. A related concern was that if the district did not have enough number of cases, the required number of HIV households might not be captured. The selection of districts was done in consultation with the State AIDS Control Societies since it was presumed that they would be in a position to provide more accurate information. In Tamil Nadu, in addition to the state capital Chennai, the survey covered five districts, namely Theni, Namakkal, Tiruchirappalli, Erode and Tirunelveli Selection of HIV households Generally, in sample surveys, villages/ urban blocks are first selected and then the household selection is made. However, in this study this procedure could not be followed for a number of reasons. First, the selection of sample sites depended upon the presence of HIV and AIDS and not on the localities. Secondly, it was not possible for NCAER to get a list of PLWHA and their addresses from which sample households could have been drawn. The Voluntary Counselling & Testing Centres (VCTC) situated at some of the government hospitals do maintain a register with the addresses of those who have tested positive, but the VCTCs could not provide the list to NCAER research team due to the confidentiality clause in conducting the HIV test. Given these constraints and keeping in mind the ethical issues and the directions of the Institutional Review Board at NCAER, it was decided that the NCAER research team would not get access to the addresses of PLWHA. Instead it was decided to make use of the counsellors of the State AIDS Control Societies who are directly in touch with the PLWHA. In the state of Tamil Nadu, as suggested by the TNSACS, VCTC counsellors were used for canvassing questionnaires and from each of the selected districts two counsellors one man and one woman were selected. Some of the PLWHA who had been trained by the State AIDS Control Society to do outreach work were also used for canvassing the questionnaires. All these persons were trained by the NCAER team and were advised to select the sample from a diverse socio-economic profile of households. However, in spite of best efforts, these persons who acted as field investigators could not get access to the upper middle class and rich households since they drew their sample mainly from those who approach the public health facilities or NGOs, which mostly cater to poor/low-income households. Generally, the middle-income/rich PLWHA would approach only private health facilities for reasons of anonymity and the doctors at a reputed private hospital in the state corroborated this. In an informal discussion with them, it was learnt that PLWHA do visit them for the treatment of opportunistic infections but due to reasons of confidentiality, the field investigators could not approach them. An attempt was also made to select PLWHA from both sexes and to include PLWHA at various stages of HIV infection. Further, the sample was selected from different places with which the field investigators were familiar, such as government general hospitals, TB hospitals, care and support Homes and Drop-In Centres (DIC) run by 14 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

35 NGOs, Network of Positive People, PPTCT and antenatal centres, and the residences of people who had tested positive. The following table shows the percentage distribution of sample PLWHA according to the place of interview. Nearly one-fourth of the sample households were interviewed at the VCTC centres. This is understandable since the VCTC counsellors themselves acted as field investigators of the survey. Also, since many of them were also either doing outreach services or were keeping in touch with their patients, the field investigators could also get access to their residences. Hence another one-fourth were interviewed at their residences. Individuals who do not live in a household set up (e.g. sex workers, persons living in shelter homes, hostels etc) were excluded from the sample, as the focus of the study was to examine the impact of HIV and AIDS on the households. In every household a maximum of two adult PLWHA, mostly husband and wife, were interviewed Selection of non-hiv households For every HIV household surveyed in a village/urban block, approximately three non-hiv households were interviewed and the survey of non-hiv households commenced immediately after the survey of PLWHA was completed. The ratio of 1:3 was arrived at as a compromise between two conflicting objectives. The first was to select a large number of non-hiv households with characteristics matching each HIV household. This was intended to reduce the variance in the non-hiv sample and therefore get as close a match as possible. The second objective was not to overshoot the budget. Keeping in mind these two objectives, the ratio of 1:3 was taken to be the best possible option. Since the purpose of surveying non-hiv households was to make comparisons with the HIV households, the households belonging to similar socio-economic strata were selected for the study. The towns/cities with sample HIV households were stratified according to types of localities. Four categories such as slums, low-income localities, middle-income localities and high-income localities were defined. Similar localities from the same city/urban block were selected for non-hiv households. Similarly, in the case of rural areas, in each district similar type/size of villages were identified in the same tehsils. Table 2.1 Distribution of sample HIV households by place of interview (in Percentage) Place of interview Rural Urban Total 1. VCTC TB hospital Care & support home, community care centre and drop in centres 4. GH ANC Network of positive people s office NGO office Residence Others Total Data and Methodology 15

36 In o rd e r t o s e l e c t t h e n o n - H I V households (control group), a listing of the households in the locality/village was undertaken. In the case of rural areas, if it was a relatively small village, all the households in the village were listed. In the case of a large village, a sampling fraction was used and every second or third or fourth household was listed depending upon the size of the village. A maximum of 150 households were listed in each selected village. Similarly, in urban areas, around 100 households were listed in each block. While selecting the sample non-hiv households from the listing sheets, over-sampling was done to compensate for non-responses. However, in the end the survey landed up interviewing 1,203 non-hiv households i.e. marginally less than three times the number of HIV households interviewed. In the listing sheets, information about the socio-economic characteristics of the households, mainly income of the household and occupational and educational status of the head of the household, was gathered. At the first step the matching was done on the basis of the broad income category of the household, i.e. the frequency distribution was in terms of the income groups of the HIV households. At the second stage, the occupational group of the head of the household was matched from within each income category. It was difficult to take this to the next stage of matching the level of education of the head of the household and hence, this variable was ignored. However, since income and education are generally seen to be highly correlated, it was assumed that this might not create very serious problems. The respondents from non-hiv households were adult males or females in the age group of years since questions on knowledge and awareness about HIV and AIDS could be answered only by this group. Accordingly, any household that did not have a member in this age group was not selected for the survey Household questionnaire The household survey was conducted using a structured interview schedule. Both HIV and non-hiv questionnaires gathered basic information like socioeconomic characteristics of all the household members, household income and expenditure, prevalence of morbidity, Table 2.2 District-wise distribution of sample HIV households Districts Number of sample HIV households Number of sample non-hiv households Rural Urban Total Rural Urban Total 1. Chennai Theni Namakkl Tiruhirappalli Erode Tirunelveli Total no. of households ,203 No. of PLWHA interviewed Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

37 differences in enrolment and dropout rates of children and time use pattern of all the household members. In addition to this, the interview schedule for non-hiv households had a section on knowledge, awareness and attitude (including views on stigma and discrimination) towards HIV and AIDS. The questionnaire for the HIV households was designed to gather basic information about migration history, HIV status of the person, stigma and discrimination in the family, community, workplace, health facilities and educational institutions. Details about the economic impact on the household like cost of medical treatment, coping mechanisms and loss of income/employment were also collected. 2.2 Qualitative techniques In addition to the household survey, case studies and Focus Group Discussions (FGDs) were conducted in order to collect information that would supplement the findings of quantitative survey and probe into the how and why. An NCAER research team that is well t r a i n e d i n q u a l i t a t i v e re s e a rc h techniques they themselves conducted the case studies and FGDs Case studies Case studies were conducted to capture in-depth information on PLWHA. Case studies are a better tool to capture problems like stigma and discrimination within the household. Chatting with the PLWHA using semi-structured in-depth interview schedules makes them feel more relaxed and gives them the confidence to reveal facts more comfortably. For the purpose of conducting case studies, unique/typical cases of PLWHA were selected with the help of field investigators, NGOs and key informants of the locality. In the state of Tamil Nadu, two such case studies were conducted Focus group discussions The FGDs were conducted with the members of the Network of Positive Persons. The main purpose of conducting the FGDs with the Network of Positive Persons was to understand social and economic problems faced by them and the legal and other issues taken up by the network. The findings from FGDs are of help in the analysis and interpretation of data collected by the household survey and hence complement the survey. The NCAER research team conducted Focus Group Discussions in Theni district at Cambam on 5th January, 2005 at the office of the Cumban Network of Positive People and there were 21 participants. (A summary of the discussion is presented in the Appendix) Training of field investigators Both men and women investigators were employed to canvass the questionnaires. The questionnaires were translated into Tamil and those who were fluent in the language were selected for conducting the survey. The NCAER researchers provided training to the field investigators and also supervised the survey. The investigators were given both classroom and field training to enable them to administer the questionnaires. Since the subject of the study is of a sensitive nature, the investigators were trained to conduct the interviews keeping in mind the ethical issues involved and were required to get the verbal consent of the respondents prior to interviewing them. The questionnaire for the HIV households was designed to gather basic information about migration history, HIV status of the person, stigma and discrimination in the family, community, workplace, health facilities and educational institutions Data and Methodology 17

38 18 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

39 Profile of Sample Households and PLWHA

40

41 Chapter 3 Profile of Sample Households and PLWHA The socio-economic and demographic backgrounds of the sample HIV and non- HIV households are presented in this chapter. It also contains a brief description of the sample PLWHA who were selected for the study. As mentioned in the previous chapter, the sample households were spread across the various districts of Tamil Nadu such as Chennai, Theni, Namakkal, Thiruchirapalli, Erode and Tirunelveli. The sample included both urban and rural households and the rural sample was slightly more in number than the urban sample. 3.1 Background characteristics of head of sample households The distribution of sample households revealed that the sample of HIV households included 31 percent households whose heads belonged to scheduled castes or scheduled tribes, this percentage was higher at 40 percent (Table 3.1) in the case of non-hiv households. The Other Backward Classes category formed 60 percent of the HIV sample, whereas this category accounted for 50 percent of the non-hiv households. The sample of households included under Others category was nearly the same for both HIV and non-hiv households. Nearly 79 percent of the household heads in both the households were in the age group of years and only a small percentage was above 60 years (Table 3.2). About 17 percent of the heads of non-hiv households belonged to the age group. Only 12 percent of the heads of HIV households were in this age group and the number of households with heads aged less than 20 years was negligible. Table 3.1 Distribution of head of sample households by caste (in Percentages) Caste groups HIV households Non-HIV households Rural Urban Total Rural Urban Total SC/ST OBC Others Total N (Number of households) ,203 Profile of Sample Households and PLWHA 21

42 Table 3.2 Occupation and level of education of heads of the households (in Percentages) HIV households Non-HIV households Rural Urban Total Rural Urban Total Age (Years) < Education Illiterate Upto primary Upto middle High school/senior secondary Graduate/diploma holders Occupation Cultivation Agri. wage labour Non-agricultural wage labour Salaried Trade/business Artisan/self-employed Transport workers Income from, pension, rent, interest, dividend etc Domestic servant Others N (Number of households) ,203 The sample mostly included households whose heads had poor educational background. The non-hiv household heads were, however, comparatively better educated than the HIV household heads. About 24 percent of the HIV and 12 percent of the non-hiv household heads were illiterate (Table 3.2). About 27 percent of the HIV household heads had completed high school or senior secondary level. In the case of non-hiv households, this number stood slightly higher at 32 percent. Five percent of heads had studied beyond senior secondary level in the case of HIV households and 10 percent in the case of non-hiv households. The pattern of distribution of household heads according to their income categories is shown in Table 3.3. An attempt was made to draw the sample of non-hiv households so that they matched the income and occupational categories of the HIV households. The number of the heads of the households were working as wage labourers, either in the agricultural sector or in other sectors was sizeable. Approximately 34 percent of the HIV 22 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

43 Table 3.3 Distribution of sample households by household income categories (in Percentages) Characteristics HIV households Non-HIV households Rural Urban Total Rural Urban Total Annual HH income (Rs.) 1. Upto 20, ,001-30, ,001-41, ,001-84, ,000 & above Average HH income (Rs.) 29,019 51,556 39,298 41,586 57,450 48,878 household heads and 38 percent of the non-hiv household heads were wage earners. About 17 percent of the heads of HIV households and nearly 22 percent of non-hiv household heads were salary earners. While the distribution according to occupational groups was similar between both the households, certain variations in the category of distribution according to income were observed Economic status of the sample households Although an effort was made to draw the sample of non-hiv households to match the income distribution levels of HIV households, the two did not work out to be exactly similar. While nearly 34 percent of HIV households are from the lowest income group of less than Rs. 20,000 per annum, only about 7 percent of non-hiv households belong to this group. While 33 percent of HIV households are in the income range of Rs. 20,001 to Rs. 41,000, the non-hiv households in this range account for 46 percent of the sample. Consequently, the percentage of households with income above Rs. 41,001 among the non-hiv sample is 47 percent while it is only 33 percent among HIV households. Because of this, it is seen that the average household income of HIV households is less than that of non-hiv households in all three; rural, urban, and total samples. The average household income has worked out to Rs. 48,878 for non-hiv households and Rs. 39,298 for HIV households. Thus, it is clear from the table that most of the sample HIV households belong to low economic and educational strata of society. Although there is enough evidence to show that it is the poor people who are more vulnerable to HIV and AIDS (UNDP, 2003), in the present sample there are more households from the poor and low-income categories due to yet another reason. In spite of their best efforts, the field investigators could not get access to the middle, upper middle class and rich households as they drew their sample mainly from public health facilities and NGOs, which mostly cater to poor/low-income households. Generally the middle/rich PLWHA would approach only private health facilities for reasons of anonymity. The doctors at a reputed private hospital in Tamil Nadu corroborated this observation. In an informal discussion with them, it was learnt that PLWHA do visit them for the treatment of opportunistic infections but due to reasons of confidentiality, the field investigators could not get access to such persons. The average household income of HIV households is less than that of non-hiv households in all three; rural, urban, and total samples Profile of Sample Households and PLWHA 23

44 Only 40 percent of the sample HIV households and 56 percent of the non- HIV households live in pucca houses; this again indicates the poor standard of living of these households (Table 3.4). More than 65 percent of the sample households are dependent on public taps/hand pumps for drinking water and only 25 percent of the sample HIV households and 28 percent of the non-hiv households have their own tap or hand pump. Sanitary facility is also an indicator of the standard of living of the households. Only 39 percent of HIV and 48 percent of non-hiv households have toilet facilities in their homes and as expected this percentage has turned out to be much lower for rural households. All the houses do not have electricity; 84 percent of the sample HIV households and 92 percent of the non-hiv households have this facility. As compared to sample HIV households, the percentage of households having electricity has turned out to be higher for the non- HIV households and expectedly higher for the urban households as compared to the rural households. For cooking, a high percentage of both HIV (51%) and non-hiv (46%) Table 3.4 Distribution of sample households by the availability of basic amenities (in Percentage) Characteristics HIV households Non-HIV households Rural Urban Total Rural Urban Total Type of house Pucca Semi-pucca Kutcha Drinking water Private tap/hand pump code Public tap/hand pump Tubewell Supply tanker Well/river/pond Any other Sanitation facility Percentage of household having toilet Electricity at home Percentage of household having electricity Type of fuel for cooking Firewood Coal Kerosene (LPG) gas Others Total Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

45 households use firewood. Liquified Petroleum Gas (LPG seems to be the next popular mode with 29 percent of HIV and 34 percent of non-hiv households using it. Kerosene users form a similar percentage in both HIV and non-hiv households. The ownership of assets and other consumer durables in the household also indicates that the economic status of sample households is quite low (Table 3.5). Although a significant number of households own a house, these houses could be just huts. In the case of both HIV and non-hiv households, as compared to urban areas, in the rural areas higher percentage of households own houses. A higher percentage of non-hiv households have their own houses/flats whether in rural or urban areas. The percentage of households owning agricultural land and livestock is marginally higher in case of HIV households. Generally, the percentage of households having consumer durables like fans, bicycles, televisions, refrigerators is slightly lower for HIV households as compared to non- HIV households since HIV households, as already seen, belong to a slightly poorer section than the non-hiv households in the sample. Table 3.5 Distribution of sample households by ownership of assets and other consumer durables (in Percentages) Characteristics HIV households Non-HIV households Rural Urban Total Rural Urban Total Owning agricultural land Household having livestock Owning house/flat/plot Owning consumer durables Fan Bicycle Radio/transistor Tape recorder Television (b/w) Television (colour) Refrigerator Telephone/mobile Washing machine Computer Two wheelers Car/jeep etc Bullock cart Tractor Thrasher Tube-well N (Number of households) ,203 Profile of Sample Households and PLWHA 25

46 3.2 Profile of sample PLWHA As expected, most of the sample PLWHA is in the age group of 20 to 40 years (Table 3.6). In fact, the majority of men (56%) are in the age group of years, while the majority of women (60%) are in the lower age group of years. While more than 75 percent of the men are currently married, in the case of women this percentage is lower at 48 percent. What is significant is that while only 7 percent of men are separated or are widowers, 45 percent of women are separated, abandoned or widowed. As expected, the percentage of unmarried women is less than the percentage of unmarried men. The level of education of the sample PLWHA is also quite low as 19 percent of men and 27 percent of women are Table 3.6 Profile of sample PLWHA (in Percentages) Male Female Age > Marital status Currently married Separated/divorced/abandoned Widowed Unmarried Education Illiterate Upto primary Upto middle High school Senior secondary Graduate/diploma N (Number of households) illiterate. There are very few persons in the sample who have studied beyond high school level. The percentage of illiteracy is higher among women, and generally, at every level of education, the percentage of women is less than that of men. In Table 3.7 the pattern of occupation of the sample PLWHA at the time of the survey is compared with the occupation pattern at the time when these people were detected HIV-positive. The purpose of this table is to see whether there has been any change in the pattern of occupation of the sample population as a result of their HIV status. While it is seen that in case of both HIV-positive men and women the percentage under any category of current occupation is less than the corresponding figure at time of detection of their status, the striking observation is the one regarding the percentage that is currently unemployed. While only 1.1 percent of HIV-positive men were unemployed at the time of detection of their status, the percentage has now gone upto 16.7 percent. Similarly, in the case of women, it has more than doubled, from 2.4 percent to 5.3 percent. Further, the percentage of women as housewives has increased from 25.8 percent to the current 27.7 percent. These clearly indicate that while there is some marginal change in the occupation of the PLWHA after discovery of their HIVpositive status, loss of employment for many seems to be the bigger problem. The sample is generally spread over all occupations, the highest percentage among men being transport workers (18.6%). Among women, the salaried (16.8%) form the highest percentage. While nearly 17 percent of the HIVpositive men are currently unemployed, nearly 33 percent of the HIV-positive women in the sample are not engaged in any income earning activity. 26 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

47 Table 3.7 Current and the past occupation of the sample PLWHA Current occupation (in Percentages) Occupation at the time of detecting HIV status Male Female Male Female Cultivation Agri. wage labour Construction worker Other non-agricultural labour Salaried Trade/business Artisan/self-employed Transport workers Income from, pension, rent, interest, dividend etc Domestic servant House wife Student Unemployed Others Total N (Number of households) Profile of Sample Households and PLWHA 27

48

49 Impact of HIV Status on Income and Employment

50 30 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

51 Chapter 4 Impact of HIV Status on Income and Employment 4.1 Income and its distribution Income is the major determinant of household welfare. Households derive their income from many sources. This study defines the occupational group of the household according to the source of income of the head of the household. For example, if the source of income of the head of the household is cultivation, then in the occupational classification that household is considered to be cultivation household. The occupation of the household is closely related to the earnings of the household as well as the vulnerability of the household to exogenous shocks, including any serious disease/illness affecting any member of the household. The distribution of both HIV and non- HIV households among the various occupational groups is quite similar as can be seen from Table 4.1. While wage earners account for 44 percent in both households, their contribution to income is about 32 percent in non-hiv households and about 35 percent in HIV households. Agriculturalists account for about nine percent of households and the same percentage of income in non-hiv households whereas they account for eight percent of households but only four percent of income in HIV households. The self employed nonagriculturalists and salaried form nearly 38 percent of the non-hiv households with their contribution to income being higher at 48 percent. This group, while forming 39 percent of HIV households, accounts for 45 percent of their income. Households belonging to the category of others under non-hiv constitute around 9 percent of the total number while this figure is much higher at 19 percent for HIV households. While agricultural wage labourers in the rural sample and non-agricultural wage earners in the urban sample form the single highest percentage of households among the non-hiv households, nonagricultural wage earners account for the highest percentage of households in both rural and urban samples of HIV households. An attempt was made to draw the HIV and non-hiv sample from similar socio-economic backgrounds. In spite of this, it can be seen that the average income per household has turned out to be higher for non-hiv households and particularly so in the rural sample. The rural sample in HIV households has only 2.25 percent of the households earning an income above Rs. 84,001 while in the non-hiv households, this sample Impact of HIV Status on Income and Employment in India 31

52 Table 4.1 Distribution of sample households, population and income by occupation Non-HIV households (in Percentages) Occupation Rural Urban Total HHs Pop Income HHs Pop Income HHs Pop Income Cultivation Agri. wage labour Non-agricultural wage Self-employed nonagriculture Salaried Others Total HIV households Occupation Rural Urban Total HHs Pop Income HHs Pop Income HHs Pop Income Cultivation Agri. wage labour Non-agricultural wage Self-employed nonagriculture Salaried Others Total is nearly three times the earlier figure, at 6.61 percent. However, in the urban sample among non-hiv households, percent of the households belong to this income group while percent of the HIV households are in this group. As expected, the lower income groups have a lower share in the income and the higher income groups have a higher share. The HIV households have a higher percentage of houses in the lower income groups and a lower percentage in the high-income categories in comparison with non-hiv households, thus accounting for the lower average income per household in the HIV category. The average annual household income analysed on the basis of occupations (Table 4.3) shows that the agricultural wage earners have the least income and the salaried have the highest income in both HIV and non-hiv categories. The average household income of HIV households in different occupational groups is less than that of the corresponding groups in non- HIV households except in the case of self- 32 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

53 Table 4.2 Distribution of households and their share in income by income categories in the sample Non-HIV households (in Percentages) Annual income category Rural Urban Total HHs Share in HHs Share in HHs Share in income income income Upto Rs. 20, ,001-30, ,001-41, ,001-84, ,001-1,30, ,30,001-1,73, Above 1,73, Total Average income per household 41,584 57,450 48,878 HIV households Annual income category Rural Urban Total HHs Share in HHs Share in HHs Share in income income income Upto Rs. 20, ,001-30, ,01-41, ,001-84, ,001-1,30, ,30,001-1,73, Above 1,73, Total Average income per household 29,019 51,556 39,298 employed non-agriculturalists. However, when the annual per capita income is taken into consideration it is seen that the per capita income of non-agriculture wage earners is also higher for HIV households indicating that HIV households in this group are smaller in size as compared to non-hiv households. Also, while there is a considerable difference in the average annual income of HIV and non-hiv households, the difference in annual per capita income is much less. In fact, the per capita income of the urban sample in both types of households is nearly the same. This clearly suggests that the size of the HIV households is smaller than the non-hiv households in the sample. One of the important determinants of variation in the household income is the number of earners. Moving up the Impact of HIV Status on Income and Employment in India 33

54 income class, it is seen that while in the non-hiv households the percentage of households with the number of earners higher than four increases (Table 4.4), no such trend is noticed in HIV households where the number of earners is four or more than four. A similar trend is noticed when the number of earners is three. As the number of earners increases, the average income per household, as well as the per capita income is seen to increase upto three earners in the case of both HIV and non-hiv households. But both these figures decrease in HIV as well as non-hiv households when the number of earners is four or more than Table 4.3 Average household and per capita annual income by occupational categories in the sample Non-HIV households (in Rupees) Occupational category Average annual household Annual per capita income income Rural Urban Total Rural Urban Total Cultivation 49,175 67,333 49,694 10,927 13,466 11,008 Agri. wage labour 31,026 27,987 30,809 7,756 5,273 7,526 Non-agricultural wage 32,994 40,952 37,189 8,763 10,115 9,500 Self-employed nonagriculture 43,715 55,803 51,604 10,725 13,648 12,635 Salaried 57,543 78,045 69,657 13,598 19,203 16,855 Others 56,240 62,962 60,600 12,678 14,912 14,102 Total 41,584 57,450 48,877 10,165 13,946 11,910 HIV households Occupational category Average annual household Annual per capita income income Rural Urban Total Rural Urban Total Cultivation 20,438 30,833 21,383 6,256 9,250 6,533 Agri. wage labour 20,881 21,366 20,953 5,349 7,122 5,557 Non-agricultural wage 31,809 43,259 37,004 9,148 11,679 10,337 Self-employed nonagriculture 33,274 71,550 57,771 8,939 19,080 15,446 Salaried 57,564 65,858 63,296 16,118 16,731 16,554 Others 24,239 38,931 32,050 6,142 10,031 8,194 Total 29,019 51,555 39,297 7,940 13,675 10, Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

55 Table 4.4 Households by number of earners and annual household income in the sample Non-HIV households (in Percentages) Annual household income Percentage of households by number of earners & >4 Total Upto Rs. 20, ,001-30, ,001-41, ,001-84, ,001 and above Total Average income per 47,165 46,910 62,653 61,578 48,877 household Per capita income 12,117 11,329 12,946 11,474 11,910 Average household size Dependency ratio HIV households Annual household income Percentage of households by number of earners & >4 Total Upto Rs. 20, ,001-30, ,001-41, ,001-84, ,001 and above Total Average income per 37,008 40,001 51,808 43,744 39,297 household Per capita income 10,947 10,175 10,869 9,155 10,600 Average household size Dependency ratio four. The reason is that with four or more earners, the HIV households do not have any household with an income above Rs. 84,001, but do in fact have households where the income is less than Rs. 30,000. Even in the case of non-hiv households, the percentage of households having an income above Rs. 84,000 is the least in households with four or more earning members. Because of this, the average household income is lesser in this group when compared with households with three earning members. Taken along with household size in this group, the per capita income of the HIV households is also less than that of households with three earning members. As the number of earners goes up, the average number of persons in Impact of HIV Status on Income and Employment in India 35

56 That the impact of the epidemic is mainly on the working members of the household is seen from the fact that the work force participation rate among PLWHA is very high the household also goes up but the dependency ratio declines. Here, the term dependency ratio implies the ratio of total population to the total number of earners in a particular household category. Therefore, dependency has been taken as the number of people dependent on income earners. (This is different from the normal definition of dependency as the ratio of population under 15 and over 65 to the ratio of population in the age group ) This in a sense, gives the actual dependency burden, which is the number of people dependent on a single earner, including the earning member. It is seen from the table that the rise in income more than compensates for the rise in household size except in the case of households having four or more earning members. The above paragraphs along with the associated tables present the picture with respect to the income profile of HIV households as well as non-hiv households. The above section clearly shows that the sample is dominated by lower income households, particularly in the HIV and AIDS category. Although the non-hiv households were selected to match the HIV households, these households belong to a slightly higher income group. 4.2 Work force participation rate among HIV and non-hiv households in the sample The impact of HIV and AIDS on households and the economy is severe because it mainly affects people in the working age group. One of the consequences of this is that children and the elderly of the household are forced to bear the additional burden of looking after the family. In the case of the years age group, the overall work force participation rate is almost similar though slightly higher in the case of HIV households (Table 4.5). This may partly be explained in terms of the smaller household size of HIV households, which is linked to lower fertility rate among these households as the HIV-positive members avoid having children. That the impact of the epidemic is mainly on the working members of the household is seen from the fact that the work force participation rate among PLWHA is very high, almost 75 percent. In the 0-14 age group, the work force participation rate is 6.67 percent in the rural sample of the HIV households for HIV-positive children. There are no HIV-positive children of this age group working in the urban sample and therefore the rate is zero. The HIVpositive people in the age group of 60+ do not belong to the work force. The interesting feature is the comparison of work force participation rate in the case of children (0-14 years) and the elderly (60 and above years) across HIV households (non-hiv persons) and non-hiv households. The work force participation rate for these age groups in HIV households is higher than similar groups in the non-hiv households. This gives credence to the general observations made in the literature that the epidemic puts additional burden on the people in these age groups, particularly the elderly, to look after the family. However, the non-hiv persons in the age group of years in HIV households have lower participation rate than the same age group among non-hiv households. The explanation for this lies in the fact that in the sample, the primary PLWHA was an adult male member. This implies that the non-hiv population in the age group of years would be dominated by women. Since women have a much lower participation rate than men, the work force participation rate in this age group is low. Further, it is likely that a person 36 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

57 Table 4.5 Work force participation rate by age group and place of residence (per 100) Age HIV households Non-HIV group PLWHA Non-HIV persons All households Rural Urban Rural Urban Rural Urban Rural Urban and above in this age group would be a student and in order not to disturb his/her studies, it is the parents who come out to join the work force. 4.3 Change of job/loss of employment of self and caregiver Of the 478 HIV-positive people who were interviewed, 475 were in the age group of years, and only their interviews have been considered for this chapter regarding the change in their job profile. Out of these 475,363 reported being currently employed. About 43 said that they had changed their jobs after being detected HIV-positive (Table 4.6). It is important to note that table 4.6 gives data related only to those people who have changed the job after being detected positive. Impact on people who completely stopped working after testing positive has been considered in the next section. Out of the 43 persons who changed their job, 21 were from urban areas. The average annual household income of the workers who changed their job was almost similar in rural and urban areas. Of the 43 who did change their jobs, only seven had received any benefits from the previous job, the average figure of these benefits being Rs. 16, 571. The impact on employment at this stage of the epidemic in India appears to be minuscule. However, no certain conclusions can be drawn from this since, as has already been mentioned, the amount of sampling bias is not known. The impact on employment and income is likely to be felt only at higher stages of the infection. The estimated impact is likely to vary with the number of such persons/households captured in the sample. But, what is of greater concern from the viewpoint of the welfare of these households is that there is no mechanism of support for those who do change or lose their jobs. The issue is more serious in the case of workers who are wage earners and lack social security. It is of interest to see what the occupational and sectoral pattern of employment is for PLWHA (before and after test) and non- HIV persons (Tables 4.7 & 4.8). The group others includes students, housewives, pensioners etc. There is a much higher share of this group in non-hiv persons as compared to PLWHA. From table 4.1 it was seen that the prevalence of HIV is higher among working members of the HIV households. The distribution across occupations in table 4.7 suggests that this is true across all occupation groups. Change in occupational distribution due to HIV and AIDS (age group 18-60) is clearly visible for people who are unemployed. Before testing, around What is of greater concern from the viewpoint of the welfare of these households is that there is no mechanism of support for those who do change or lose their jobs Impact of HIV Status on Income and Employment in India 37

58 Table 4.6 Change in job due to HIV and AIDS (in Percentages) Number of workers who changed jobs after being detected positive Rural Urban Total Average monthly income of those who changed jobs 2,470 2,652 2,559 Number that received any benefit Average benefit received at the time of leaving the job 1,333 28,000 16,571 for those who received benefit Average number of times people changed jobs after being tested positive The impact of HIV and AIDS on employment can influence the pattern of employment/ non-employment of other members of the household as well 1.47 percent were unemployed but after testing around percent are unemployed. The number of unemployed could well have increased in another way. If any of the female PLWHA were working before the test and had to give up work, it would be reflected in the increase in the category of others, and the table shows that such a difference exists. Similarly, the difference in the sectoral pattern of employment is mainly in terms of much higher proportion of those for whom the sector is Not available in the case of non-hiv households (Table 4.8). Here the term Not Available refers to all those who are in labour force but unemployed, as well as students, housewives etc. The percentage of HIV Not available increased after the test. The change in jobs was mainly out of agriculture and allied services, manufacturing, trade, transport, communication into Not available category due to increase in unemployment and a marginal increase in health related and other services. Some of the PLWHA are currently working in NGO sectors providing services to HIV infected persons. The decrease in the percentage of people in agriculture and allied activities from percent (before test) to percent (after test) is clearly seen in the decrease in the percentage of people in cultivation and agriculture wage labour occupation groups. The impact of HIV and AIDS on employment does not remain limited to only those who are HIV-positive. It can influence the pattern of employment/ non-employment of other members of the household as well. This is particularly true of the person who provides care to the PLWHA. However, the direction of this impact is not clear. The pressure on the time of the caregiver can result in that person s withdrawal from the work force. On the other hand, loss of income due to withdrawal of PLWHA from work force or the increased consumption expenditure requirements (especially medical expenses) can result in greater participation of other members of the household in the work force. It needs to be noted here that not all PLWHA require care. It is only at very advanced stages of the infection that some form of care is required by the PLWHA. In the sample, out of the total of 475 PLWHA in the age group 18 to 60 years, 123 reported that they needed someone to take care of them. Some of the PLWHA have more than one family member taking care of them and hence the number of caregivers is 128. Almost 58 percent of the caregivers were employed at the time of the survey. However there is no report of anyone 38 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

59 Table 4.7 Change in occupational distribution due to HIV and AIDS (age group 18-60) (in Percentages) Occupational category Distribution of PLWHA Distribution of non- Before test After test PLWHA (non-hiv households) Cultivation Agri. wage labour Non-agricultural wage Self-employed non-agriculture Salaried Unemployed Others Total Number of persons ,328 Table 4.8 Change in sectoral distribution due to HIV and AIDS (Age group 18-60) (in Percentages) Occupational category Distribution of PLWHA Distribution of non- Before After test PLWHA (non-hiv test households) Agriculture and allied Manufacturing & construction Trade, transport, comm, hotels & rest Health Other services Not available Others Total Number of persons ,328 who had to give up his/her job in order to take care of the HIV patient. While these ratios cannot be taken as true population parameters, they may be taken as indicative of the impact on labour supply due to HIV epidemic. Further, this impact is likely to grow in the future with an increase in HIV prevalence and a higher percentage of these patients requiring someone to take care of them. Even if the prevalence rates remain constant, the impact is going to be felt as the number of PLWHA in advanced stages of infection tends to increase. Further, the absolute numbers are going to be very high even if the proportion seems to be small. The distribution across sectors of the caregivers that are employed is shown in table In the sample, a higher proportion of caregivers are working as wage labourers in both urban and rural samples. A lesser number of them are Impact of HIV Status on Income and Employment in India 39

60 Table 4.9 The situation with respect to provision of care to PLWHA PLWHA who need care 123 Number of caregivers 128 Number of caregivers who are currently employed 74 Number of caregivers who gave up their job in order to provide care 0 self employed or salaried. The caregivers are likely to face the problem of time poverty in HIV households as they try to cope with the burden of providing care to the PLWHA as well as meeting their commitments at their workplace. This problem is going to become more serious and visible in the coming years as the number of persons suffering from AIDS rises and hospital facilities are put under greater strain due to such patients. 4.4 Loss of income of PLWHA and the caregiver There are two possible ways in which HIV households may lose income: (a) the PLWHA may be currently working but may have to take leave/be absent from work due to ill health; and, (b) the PLWHA may drop out of labour force as her/his physical condition worsens. While these two possible channels of impact have been highlighted in the Table 4.10 Occupational distribution of caregiver Occupational category Employment pattern of caregiver Rural Urban Total Cultivation Agriculture wage labour Non-agricultural wage Self-employed non-agriculture Salaried Others Total existing literature on HIV and AIDS, this is not all. The caregiver too may suffer a similar loss of income. The reason is likely to be leave/absence from work to look after the PLWHA and, as the condition of PLWHA member worsens, a complete withdrawal from labour force to provide full attention to the latter. In this section all these possible channels of impact are explored on the basis of the sample. It is difficult to project this at the level of the state since the sample is not proportionate to population and hence, weights cannot be assigned to the household/person. As noted above, 363 persons reported being currently employed among the 475 persons in the age group of years who were interviewed in detail. Within this group, 164 i.e. around 45 percent (Table 4.11) declared that they had suffered loss of income in some form. This is clearly a large percentage. While this may not reflect the true population parameter, given the large sampling errors that are possible, it does indicate that a large percentage of HIV households suffer from loss of income. It is seen from the table that the income lost is percent of the current household income. The income loss in the sample is higher for the rural households (14.46%) in comparison with urban households (7.97%). However, it is difficult to project this figure to predict the impact at the level of the state. Even to get a crude measure of the impact, the share of the income of HIV households in 40 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

61 Table 4.11 Loss of income of workers with HIV if currently working by occupational groups Number of persons who suffered loss of income Average income lost due to leave/ absence in last one year (in Rs) Average fringe benefits lost during last one year Income lost as a percentage of current household income (in Rs) Rural Cultivation * 3 39, Agriculture wage labour 28 1, Non-agricultural wage 31 3, Self-employed non-agriculture 13 2, Salaried 12 4, Others Total 87 4, Urban Cultivation Agriculture wage labour 7 2, Non-agricultural wage 39 4, Self-employed non-agriculture 15 5, Salaried 16 2, Others Total 77 4, Rural + Urban Cultivation * 3 39, Agriculture wage labour 35 1, Non-agricultural wage 70 4, Self-employed non-agriculture 28 4, Salaried 28 3, Others Total 164 4, *Loss of income includes amount spent on hired labourers the total income of all households would be needed. In trying to measure the loss in GDP there are further problems such as the possibility of substitution of PLWHA workers with other workers and substitution of labour by capital. Since the total number of PLWHA in India as per the estimates released by NACO were million (a section would have never been employed) in 2004 and there were million workers in 2001 as per the 2001 Census, scaling up the figure to the state or national level would not show a very dramatic impact on the economy or households. However, it can only be inferred at this point of time that as more and more PLWHA turn into PLWHA, the impact is likely to become more visible. In all, 164 PLWHA 87 from the rural sample and 77 from the urban sample have reported loss of income. Most Impact of HIV Status on Income and Employment in India 41

62 Most of the loss in income has been due to income lost by leave/absence in the last one year of the loss in income has been due to income lost by leave/absence in the last one year. Small losses in fringe benefits have also been reported as has been the extra amount spent by cultivators on hired labourers. This income loss is spread across all occupational groups. The highest number of PLWHA who have suffered from losses belong to the wage group (105 out of 164). This is to be expected since this group would lose earnings for each day that they do not report to work. The salaried class is likely to enjoy some benefits like casual/medical/earned leaves that they can make use of. Only non-agricultural wage labourer and salaried households report loss of fringe benefits. This again is to be expected since other groups are unlikely to have any fringe benefits which relate to such things as overtime pay, paid leave etc. While Table 4.11 is related to loss of income for those PLWHA who were still working, Table 4.12 deals with the loss of income for those who have withdrawn themselves from the labour force. While some persons are likely to have never been employed, the table here relates to only those individuals who stopped working after being tested positive. It is seen that 53 people stopped working after being detected HIV-positive. The loss of income per person turned out to be approximately Rs. 24,095 per annum in the sample. None of the households reported having spent any extra amount on hiring labourers to substitute the PLWHA worker. The impact does not appear to be much when seen as a percent of the total current income of the HIV households in the sample. If this ratio were taken as the true population parameter then the impact at the level of the state, given the current prevalence rate, would not amount to much. In fact, this may be taken as the outermost bound of the reduction in GDP due to reduced labour supply caused by HIV and AIDS, ignoring the large possibilities of substitution at the level of the state, particularly in a labour surplus economy. Although the loss per se does not appear to be much considering the fact that the samples are taken from households belonging to low economic strata, the losses are huge to the affected families as evidenced by income lost as a percentage of current household income which has varied between 38 percent and 187 percent, with the total at 84.2 percent. For some household groups it is more than 100 percent, i.e. the lost income is more than the current household income. This can result in great misery at the household level and can even increase the level of poverty. The scale of impact is likely to increase in the future as the number of households so affected would increase with greater number of currently working PLWHA withdrawing from labour force due to illness. There would be a need to supplement the income of HIV households, find some form of employment for other members of the household or even the PLWHA so that the hard fought battle against poverty is not reversed. The loss of income for HIV households is not limited to the loss of fringe benefits or jobs of the PLWHA. It is accentuated by the loss of income of the person providing care to the PLWHA. For those who are employed, this can be due to reduced time spent in the labour market in order to look after the PLWHA. Seventy-three persons in the sample reported reduction in household income due to loss of income of the caregiver, the average loss per person being approximately Rs. 2,150 (Table 4.13). As a percentage of the caregivers that are currently employed, the number of caregivers reporting 42 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

63 Table 4.12 Loss of income of workers with HIV if currently not working by occupational groups Persons Average income lost due to loss of job Extra amount spent on hired labourers for cultivators Income lost as a percentage of current household income Rural Cultivation Agriculture wage labour 7 15, Non-agricultural wage 16 24, Self-employed nonagriculture 5 32, Salaried 4 37, Others Total 32 23, Urban Cultivation Agriculture wage labour 4 20, Non-agricultural wage 9 23, Self-employed nonagriculture 3 30, Salaried 5 29, Others Total 21 25, Rural & urban Cultivation Agriculture wage labour 11 17, Non-agricultural wage 25 24, Self-employed nonagriculture 8 31, Salaried 9 32, Others Total 53 24, loss of income is very high. However, as a percentage of total workers in the HIV households in the sample, this figure is very small. This suggests the macro-economic impact of this may not amount to much. However, the long-term impact may not remain similarly low. For those households that did experience reduction in the income of the caregiver, the proportion of income lost to current household income was nearly 7 percent in the sample. However, the impact has varied across households, from 36 percent to 0.47 percent. As a percentage of the total income of all HIV households together, the impact is minuscule. Impact of HIV Status on Income and Employment in India 43

64 Occupational category Table 4.13 Loss of income of caregiver if currently working by occupational groups No. HHs Average income lost due to leave/ absence from work (in Rs) Rural Urban Total Income lost as a percentage of current household income No. HHs Average income lost due to leave/ absence from work (in Rs) Income lost as a percentage of current household income No. HHDS Average income lost due to leave/ absence from work (in Rs) Income lost as a percentage of current household income Cultivation Agriculture 20 1, , , wage labour Nonagricultural 11 5, , wage Self-employed nonagriculture Salaried Others 9 1, , Total 51 2, , , It is also possible that the caregiver may have to completely withdraw from the labour force in order to take care of the PLWHA. However, in the present sample there were no such cases. Overall, it may be surmised that at the current stage of the HIV epidemic in the state, the main impact on the economy is going to come through lower productivity or withdrawal from labour force of PLWHA. The impact due to reduced time spent by caregivers in the labour market is very low. However, the household level impact, for the specific households that experience the twin impacts, is very significant. In order to predict some economy-wide effects of the impact of HIV and AIDS the average number of workdays lost per PLWHA worker needs to be observed. This would provide an indication of the amount of loss that would result due to the depletion of manpower. Overall, the workdays lost for those who had to take leave or be absent from work numbered around 44 in a year. The loss was highest for the agriculture wage labour households. It may be emphasised that leave/absence also depends on the stage of infection of the person and the kind of work one is engaged in. When using these figures to predict economy-wide effects, however, one has to keep in mind the possibility of substitution of PLWHA workers with other non-hiv workers. For instance, in agricultural households with the PLWHA still active, only one household reported having spent an extra amount on hired labourers. In the other two households, other family members substituted for 44 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

65 the PLWHA whenever he was ill and could not attend to work. There were no cases where the agriculturalist PLWHA had withdrawn from the work force. This implies that even at the household level the impact may be muted in economic terms due to possibilities of substitution. But this impact is likely to be felt by the household members in terms of effort intensity and time-poverty. At the sectoral level, the impact is unlikely to be felt till the possibilities of substitution have been exhausted, which would be the case if the epidemic continues to spread without any checks and controls. In the survey, an attempt was made to find the reason for the withdrawal of PLWHA from the work force; while 91.4 percent of the PLWHA had done so due to ill health, around 1.7 percent had taken voluntary retirement, while the remainder had other reasons. This shows that the main reason for reduction in labour supply in the economy is going to be the ill health of the PLWHA workers and efforts to keep them healthy would reduce the macro-economic impact to some extent. Impact on the earnings of the PLWHA was also one of the issues discussed at the FGD held at Cambam. While one male participant mentioned that his income had reduced due to ill health, another had to give up work since he had been suffering from various OIs including TB. It was found that most of the male participants had suffered loss of income after they had tested HIV-positive. However, there were also four women who had not been working before the death of their husbands, but had started working with the Network and other NGOs only after being widowed. 4.5 Support from employer The survey also tried to find out whether the employers were providing some form of support to the PLWHA workers in the form of reimbursement of medical expenditure, paid leave, group insurance etc. Primarily, it was found that only a small percentage of workers had revealed their status in the workplace. While there were reports of discrimination in the case of some PLWHA, there were also cases where they were getting benefits from the employers. However, most of those receiving benefits were employed in NGOs working in the field of HIV and AIDS. In view of these reasons no detailed study was made on this issue. The main reason for reduction in labour supply in the economy is going to be the ill health of the PLWHA workers and efforts to keep them healthy would reduce the macro-economic impact to some extent Table 4.14 Average number of work days lost due to leave/absence from work of PLWHA Occupation group Average number of work days lost due to leave/absence in last one year Rural Urban Total Cultivation Agriculture wage labour Non-agricultural wage Self-employed non-agriculture Salaried Others Total Impact of HIV Status on Income and Employment in India 45

66 4.6 Observations The prevalence of HIV(within HIV households) is higher among working people than among those who are not in the work force, as also seen in terms of the work force participation rates calculated from the sample. This is a matter of concern from the point of view of the economic impact of the epidemic on the household as well at a more aggregated level. For the HIV households it has resulted in slightly higher prevalence of child labour as compared to non-hiv households. Also there is higher work force participation rate among the elderly in the HIV households. This raises the question of old age security as well as the education of the children. The loss of income for the HIV households varies across occupational and income groups. Of particular concern is the status of wage labourers who do not have any social security and therefore, are hard hit by any episode of AIDS related illness. The main impact is felt through the loss of job or leave/absence from work of the PLWHA. It may once again be emphasised that it is mainly ill health that forces most of the PLWHA to give up their jobs. The sample consisted of PLWHA in all stages of infection and only those in the 3rd or 4th stage would be too ill to work. Further, some households have more than one PLWHA in the work force. Hence, as more and more people go into the 3rd or 4th stage of infection the impact would be more pronounced. Although the aggregate economic impact of the infection may not appear to be much, the impact at the household level is extremely serious as seen in the present sample, which consists of households belonging to poor sections of the economy. 46 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

67 Impact on the Level and Pattern of Consumption and Savings of the Households

68 48 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

69 Chapter 5 Impact on the Level and Pattern of Consumption and Savings of the Households 5.1 Consumption patterns The pattern of expenditure of the sample HIV and non-hiv households is presented in table 5.1 separately for rural and urban areas. The HIV households spend a relatively lower proportion of their total consumption expenditure on food than the non-hiv households both in rural and urban areas. However, both in HIV and non-hiv samples, the urbanites seem to spend less on food than the rural households. From the table, it appears that this could be in order to make up for the high rents that they need to pay. The HIV households in the sample seem to be spending quite a huge proportion of their income, next only to food & other non-food, on rent, and this is, in fact, much higher than the non-hiv households. This could be because, as seen in chapter three, when compared to HIV households, a higher proportion of non-hiv households have their own houses. Here again, it is noticed that the urban people pay much higher rents than the rural ones. On items like fuel & light, durables, education of children and other non-food items, the proportion of expenditure by HIV households is slightly Table 5.1 Share of expenditure on some of the major items (in Percentages) Item Non-HIV households HIV households Rural Urban Total Rural Urban Total Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total Impact on the Level and Pattern of Consumption and Savings of the Households 49

70 lesser than that of non-hiv households both in rural and urban areas. However, on medical expenses, the HIV households spend a much higher proportion of their consumption expenditure in comparison with non-hiv households. In all, it appears that in order to compensate for the higher expenditure that they are forced to incur on health related items and on rent, the HIV households may be cutting down expenditure on all other items including very important ones like (i) food which is very essential for their health, and (ii) education of children in the household which is likely to have adverse effects on the family s future income. Table 5.2 below gives the average per capita per month expenditure on these items for the two sets of households. It is seen that even in absolute terms the HIV households spend less on food and education of children, but spend more on house rent and medical expenses in comparison with non-hiv households. The total per capita expenditure on these items is very similar between the two kinds of households. While the per capita expenditure of the rural samples in non-hiv (Rs. 817) and HIV (Rs. 807) households are very nearly the same, this is slightly higher for the urban HIV households (Rs. 1,212) in comparison with urban non-hiv households (Rs. 1,123). On the whole, the average per capita per month expenditure of the HIV households is slightly more than the non- HIV households in the sample in spite of their per capita income being lesser than the non- HIV households. Tables 5.3 and 5.4 present the average annual household expenditure and the per capita expenditure pattern, respectively, of the two sets of households with reference to occupation groups. While in non-hiv households it is seen that the total average income is slightly higher than the average expenditure, in the case of HIV households, the reverse is true, that is, the average expenditure is more than the average income and this is true across all occupational groups (in HIV households) except that of self- Table 5.2 Average per capita per month expenditure on some major items (in Rupees) Item Non-HIV households HIV households Rural Urban Total Rural Urban Total Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total 817 1, , Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

71 Table 5.3 Average per household consumption expenditure by occupation groups Non-HIV households (in Rupees) Item Rural Cultivate Agri. wage labour Non agri. wage Expenditure per household Self emp. Non Salaried Others Total Cereals 9,991 5,477 5,311 5,716 7,687 6,183 6,577 Pulses 1,357 1,151 1,121 1,197 1,287 1,271 1,210 Other food 12,981 10,237 11,482 13,124 15,020 13,405 12,264 Total food 24,329 16,864 17,915 20,038 23,994 20,859 20,050 Fuel and light 2,276 2,060 2,278 3,114 3,778 3,449 2,625 House rent Clothing & footwear 1,804 1,420 1,386 1,747 2,371 2,191 1,709 Durables ,095 1,252 1, Education of children 1, ,011 2,448 3,730 2,243 11,706 Medical 1,259 2,227 1,506 1,383 3,926 3,782 2,181 Other non-food 11,071 7,489 7,657 9,709 21,988 11,401 10,963 Total 43,571 31,108 32,682 39,860 61,780 45,269 40,300 Urban Cereals 13,840 3,966 5,736 6,603 6,915 6,969 6,426 Pulses 2, ,203 1,104 1,224 1,336 1,201 Other food 20,416 8,838 12,552 14,966 18,073 15,494 14,989 Total food 36,576 13,616 19,491 22,674 26,213 23,798 22,616 Fuel and light 4,400 2,077 4,049 5,546 7,056 6,094 5,455 House rent 0 1,846 2,914 4,048 4,910 3,067 3,710 Clothing & footwear 4,817 1,921 1,505 1,949 2,858 3,350 2,254 Durables 2, , ,185 1,110 Education of children ,686 2,473 3,166 2,401 2,341 Medical 900 1,465 1,913 1,254 1,058 1,207 1,416 Other non-food 13,285 4,427 8,372 12,579 28,355 23,079 16,801 Total 62,311 26,214 40,683 51,788 74,587 65,180 55,704 All Cereals 10,101 5,369 5,535 6,295 7,231 6,693 6,508 Pulses 1,385 1,127 1,164 1,137 1,250 1,313 1,206 Other food 13,194 10,137 12,046 14,326 16,824 14,760 13,517 Total food 24,679 16,632 18,746 21,758 25,305 22,766 21,230 Fuel and light 2, ,212 4,701 5,715 5,164 3,926 House rent ,798 2,756 3,205 2,076 1,920 Clothing & footwear 1,890 1,456 1,449 1,879 2,659 2,943 1,960 Durables ,207 1,087 1, Education of children 1, ,367 2,464 3,396 2,346 1,998 Medical 1,249 2,173 1,721 1,299 2,231 2,112 1,829 Other non-food 11,134 7,271 8,034 11,582 25,750 18,976 13,647 Total 44,107 30,758 36,899 47,645 69,348 58,184 47,381 (Contd.) Impact on the Level and Pattern of Consumption and Savings of the Households 51

72 Table (Contd.) HIV households (in Rupees) Item Cultivate Agri. wage labour Expenditure per household Non agri. Self emp. Salaried Others Total wage non Rural Cereals 4,892 3,614 4,034 4,421 6,129 3,750 4,233 Pulses Other food 11,839 9,163 11,370 11,461 17,058 9,325 11,122 Total food 17,616 13,523 16,053 16,673 23,999 13,789 16,096 Fuel and light 1,774 1,445 2,243 1,927 3,881 2,167 2,110 House rent , ,543 2,299 1,360 Clothing & footwear 1,425 1,594 1,801 1,311 1,779 1,502 1,611 Durables , Education of children 877 2, ,438 1,208 1,365 Medical 2,950 3,784 2,918 3,610 8,168 5,530 4,108 Other non-food 6,583 5,359 9,099 8,166 15,950 8,324 8,330 Total 31,928 29,572 35,149 33,848 58,977 35,049 35,538 Urban Cereals 4,040 3,320 3,959 5,384 5,767 4,389 4,724 Pulses ,059 1,126 1, Other food 11,612 9,187 12,151 17,290 16,227 13,701 14,252 Total food 16,208 13,057 16,954 23,733 23,120 19,093 19,945 Fuel and light 2,420 1,740 3,799 5,126 6,035 3,844 4,477 House rent 800 2,400 6,978 7,819 11,847 3,994 7,356 Clothing & footwear 1,800 1,411 1,499 2,246 3,097 1,973 2,136 Durables 1, , Education of children 2, ,973 2,246 1,285 1,484 Medical 1,133 5,060 2,964 3,194 4,488 2,510 3,356 Other non-food 7,947 8,452 12,789 22,687 19,182 11,561 15,527 Total 34,058 33,160 46,339 68,324 70,699 44,630 55,009 All Cereals 4,815 3,570 4,000 5,037 5,879 4,090 4,457 Pulses , Other food 11,819 9,166 11,724 15,192 16,483 11,651 12,549 Total food 17,488 13,454 16,462 21,192 23,392 16,609 17,851 Fuel and light 1,833 1,488 2,949 3,974 5,370 3,058 3,190 House rent 91 1,171 4,034 5,225 8,974 3,201 4,094 Clothing & footwear 1,459 1,567 1,664 1,909 2,690 1,753 1,850 Durables , Education of children 979 2, ,590 1,997 1,249 1,419 Medical 2,784 3,973 2,939 3,343 5,625 3,924 3,765 Other non-food 6,707 5,815 10,773 17,459 18,184 10,045 11,612 Total 32,122 30,102 40,227 55,913 67,079 40,143 44, Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

73 Table 5.4 Per capita consumption expenditure on various items by occupation groups Non-HIV households (in Rupees) Item Rural Cultivate Agri. wage labour Non agri. wage Per capita Self emp. non Salaried Others Total Cereals 2,220 1,369 1,411 1,402 1,817 1,394 1,608 Pulses Other food 2,885 2,559 3,050 3,220 3,550 3,022 2,998 Total food 5,406 4,216 4,758 4,916 5,670 4,702 4,901 Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food 2,460 1,872 2,034 2,382 5,196 2,570 2,680 Total 9,683 7,777 8,680 9,780 14,600 10,205 9,852 Urban Cereals 2, ,417 1,615 1,702 1,651 1,560 Pulses Other food 4,083 1,665 3,100 3,660 4,447 3,670 3,639 Total food 7,315 2,565 4,814 5,545 6,450 5,636 5,490 Fuel and light ,000 1,357 1,736 1,443 1,324 House rent , Clothing & footwear Durables Education of children Medical Other non-food 2, , ,977 5,466 4,079 Total 12,462 4,939 10,049 12,666 18,353 15,437 13,523 All Cereals 2,238 1,312 1,414 1,541 1,750 1,558 1,586 Pulses Other food 2,923 2,476 3,077 3,508 4,071 3,435 3,294 Total food 5,467 4,063 4,789 5,327 6,123 5,298 5,173 Fuel and light ,151 1,383 1, House rent Clothing & footwear Durables Education of children Medical Other non-food 2,466 1,776 2,052 2,836 6,231 4,416 3,325 Total 9,770 7,514 9,426 11,666 16,781 13,540 11,545 (Contd.) Impact on the Level and Pattern of Consumption and Savings of the Households 53

74 Table (Contd.) HIV households Item Rural Cultivate Agri. wage labour Non agri. wage Per capita Self emp. non (in Rupees) Salaried Others Total Cereals 1, ,160 1,188 1, ,158 Pulses Other food 3,624 2,347 3,270 3,079 4,776 2,363 3,043 Total food 5,393 3,464 4,617 4,479 6,720 3,494 4,404 Fuel and light , House rent Clothing & footwear Durables Education of children Medical ,287 1,401 1,124 Other non-food 2,015 1,373 2,617 2,194 4,466 2,109 2,279 Total 9,774 7,575 10,109 9,093 16,514 8,882 9,724 Urban Cereals 1,212 1,107 1,069 1,436 1,465 1,131 1,253 Pulses Other food 3,484 3,062 3,281 4,611 4,122 3,530 3,780 Total food 4,862 4,352 4,578 6,329 5,874 4,920 5,290 Fuel and light ,026 1,367 1, ,188 House rent ,884 2,085 3,010 1,029 1,951 Clothing & footwear Durables Education of children Medical 340 1, , Other non-food 2,384 2,817 3,453 6,050 4,873 2,,979 4,119 Total 10,217 11,053 12,512 18,220 17,961 11,500 14,591 All Cereals 1, ,117 1,347 1,538 1,046 1,202 Pulses Other food 3,611 2,431 3,275 4,062 4,311 2,979 3,385 Total food 5,344 3,568 4,598 5,666 6,118 4,246 4,815 Fuel and light ,063 1, House rent ,127 1,397 2, ,104 Clothing & footwear Durables Education of children Medical 851 1, ,471 1,003 1,016 Other non-food 2,049 1,542 3,009 4,668 4,756 2,568 3,132 Total 9,815 7,983 11,237 14,950 17,544 10,263 11, Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

75 employed non-agriculturists. Similarly, the total average per capita expenditure in non-hiv households is slightly lesser than total per capita income while in HIV households, the per capita expenditure is more than the per capita income. Once again, it is noticed that this is true across different occupational groups except in the case of self-employed nonagriculturists. Even when analysed on the basis of occupational groups, it is generally seen that the HIV households spend less than their counterparts in non-hiv households on food & education of their children, but more on house rent and medical expenditure. The medical expenditure is more than twice that of non-hiv households. Within the different occupational groups under HIV households, the salaried spend the highest on medical expenses followed surprisingly by the agricultural wage labourers and Others. However, it may be remembered that the medical expenses depend not only on whether they are being attended to in government or private hospitals, but also on the number of sick people in a household, the number of times medication is required and also the seriousness of the illness. Expenditure on health is also linked to the perception of the illness and salaried and self-employed households are likely to be better educated and have a higher perception of illness. In general, expenditure on food is seen to vary between 37 percent to 56 percent in the different occupational categories under non-hiv households and between 35 percent to 55 percent in HIV households (Table 5.5). Among different groups, while the salaried spend the least on food, the cultivators spend the maximum (in both HIV and non-hiv households). While in the case of the salaried class in non-hiv households, the lower proportion of consumption expenditure on food is mainly substituted by higher spending on other non-food expenditure, which relates to social events etc; in the case of the salaried in HIV households, low expenditure on food is substituted by much higher expenditure on rent as well as other non-food expenditure. Cultivators, selfemployed non-agriculturists and the salaried are the groups which are seen to spend a higher proportion of the total spending on education compared to other groups, both in non-hiv and HIV households, the percentage being lesser in HIV households. In the HIV sample, the percentage has turned out to be the highest for agricultural wage labourers, but this could be due to some sampling error in case of rural agricultural wage labour households selected where one single household could be spending a very huge amount. The HIV households in different groups devote a lower percentage of the total expenditure to food as compared to corresponding groups in the non-hiv households. These households seem to be re-allocating consumption expenditure to medical expenses mainly by decreasing food expenditure even though it is very important that they take good food to keep in good health. One of the important determinants of consumption expenditure is income. In the above tables, it was seen that occupation groups which earn less also spend less and the pattern of expenditure also differs across these groups. Table 5.6 presents the pattern of expenditure by income groups. As was seen in the tables on income distribution, the sample is very sparse in the upper tail of income distribution. Hence, these income groups have been combined. The proportion of expenditure on food falls with increase in Cultivators, self-employed non-agriculturists and the salaried are the groups which are seen to spend a higher proportion of the total spending on education compared to other groups Impact on the Level and Pattern of Consumption and Savings of the Households 55

76 Table 5.5 Distribution of consumption expenditure cross broad groups of consumption items by occupation Non-HIV households (in Percentages) Item Cultivate Agri wage labour Non agri. wage Self-emp. non Salaried Others Total Rural Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total Urban Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total All Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total (Contd.) 56 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

77 Table (Contd.) HIV households Item Rural Cultivate Agri. wage labour Non agri. wage Percentages Self-emp. non (in Percentages) Salaried Others Total Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total Urban Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total All Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total Impact on the Level and Pattern of Consumption and Savings of the Households 57

78 Table 5.6 Distribution of consumption expenditure by income groups and items of expenditure Non-HIV households (in Percentages) Item Rural Upto Rs. 20,000 20,001-30,000 30,001-41,000 41,001-84,000 84,001 and above Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total Total Urban Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total All Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total (Contd.) 58 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

79 Table (Contd.) HIV households (in Percentages) Item Rural Upto Rs. 20,000 20,001-30,000 30,001-41,000 41,001-84,000 84,001 and above Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total Urban Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total All Cereals Pulses Other food Total food Fuel and light House rent Clothing & footwear Durables Education of children Medical Other non-food Total Total Impact on the Level and Pattern of Consumption and Savings of the Households 59

80 While the non-hiv households are positive savers in both rural and urban samples, the HIV households, on the contrary, are negative savers income and this fall is substantial moving from the income group of Rs. 41,000- Rs. 84,000 to the income group of Rs. 84,000 and above. This is true for both HIV and non-hiv households. But between non-hiv and HIV households, the proportion spent on food is lesser in HIV households. While non-hiv households devote about 3 percent of consumption expenditure on medical expenditure, this figure is about 6 percent in HIV households. T h e a v e r a g e h o u s e h o l d a n n u a l consumption expenditure and the per capita annual consumption expenditure item-wise and income group-wise for non-hiv and HIV households are presented in tables 5.7 and 5.8. It is noticed that although on the whole, the average expenditure is slightly higher in the case of non-hiv households, except in the lowest income group; in all the other groups the average expenditure is higher in the HIV households. However, in terms of per capita expenditure, except for the lowest income group, it is higher in all income groups as well as in the total for HIV households in comparison with non-hiv households. As can be expected, the average household consumption expenditure is higher for the higher income groups (Table 5.7). The rise in expenditure is sharper, going from income group of Rs. 41,001-84,000 to Rs. 84,001 and above. This is clearer on looking at the per capita expenditure shown in table 5.8. The rise in average household expenditure with rise in income could be due to both, increase in household size as well as increase in per capita consumption. As already noticed, the three major items of expenditure concerning the study are expenditure on food & education of children, where the HIV households are spending less than non-hiv households both in terms of average expenditure and per capita expenditure, and medical expenses, where the HIV households are spending more than twice the amount spent by non-hiv households in terms of both average expenditure and per capita expenditure. The fact that HIV households are spending less than non- HIV households on the education of children corroborates the assumption in literature that HIV and AIDS would result in lower investment on education of children (Bell, Devarajan and Gersbach, 2003). 5.2 Household savings Although, in the present sample, the non-hiv households are slightly better placed because of their average household income being higher than the HIV households, the difference in their savings shows how badly the HIV households are placed (table 5.9). While the non- HIV households are positive savers in both rural and urban samples, the HIV households, on the contrary, are negative savers. Of the different kinds of savings considered, the non-hiv households have a small negative saving only in the case of agricultural land. Considering the huge expenses that all households seem to incur on Other non-food items, which relates to expenses on marriages and suchlike, it is possible that the households would have disposed off some assets for the purpose. However, in case of HIV households, they possess savings only in the form of cash/bank deposits and as shares and that too much less than similar savings of non-hiv households. The fact that HIV households are negative savers with respect to assets (house/plot) could also be the reason for their paying a high proportion of their expenditure as rent. Further, for the urban sample of the HIV households, even savings under cash/ bank deposits are negative and they only 60 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

81 Table 5.7 Average household annual consumption expenditure by income group Non-HIV households (in Rupees) Item Rural Upto Rs. 20,000 20,001-30,000 30,001-41,000 41,001-84,000 84,001 and above Cereals 2,903 5,301 6,921 8,551 8,785 6,577 Pulses 801 1,056 1,296 1,345 1,743 1,210 Other food 7,809 9,362 11,559 15,775 20,579 12,264 Total food 11,512 15,719 19,776 25,671 31,107 20,050 Fuel and light 1,361 1,734 2,561 3,503 5,438 2,625 House rent Clothing & footwear 804 1,153 1,679 2,147 4,077 1,709 Durables , Education of children ,166 4,233 1,706 Medical 1, ,859 2,760 8,155 2,181 Other non-food 4,208 5,839 9,476 12,943 43,256 10,963 Total 19,981 26,901 37,068 51,475 1,00,301 40,300 Urban Cereals 4,651 4,296 4,986 7,279 9,234 6,426 Pulses 1, ,020 1,272 1,575 1,201 Other food 7,576 9,432 11,932 15,971 25,940 14,989 Total food 13,359 14,687 17,939 24,521 36,749 22,616 Fuel and light 2,200 2,790 4,060 6,012 10,281 5,455 House rent 1,925 1,764 3,625 4,019 6,252 3,710 Clothing & footwear 1,043 1,121 1,407 2,483 4,577 2,254 Durables ,106 3,856 1,110 Education of children ,453 2,636 5,463 2,341 Medical ,009 1,839 1,416 Other non-food 3,450 4,817 6,506 14,421 57,074 16,801 Total 23,151 26,638 35,979 57,206 1,26,091 55,704 All Cereals 3,391 4,955 6,118 7,843 9,078 6,508 Pulses 893 1,023 1,182 1,304 1,633 1,206 Other food 7,744 9,386 11,714 15,884 24,081 13,517 Total food 12,028 15,364 19,014 25,031 34,792 21,230 Fuel and light 1,595 2,097 3,183 4,899 8,601 3,926 House rent ,742 2,407 4,234 1,920 Clothing & footwear 871 1,142 1,566 2,334 4,404 1,960 Durables ,015 3, Education of children ,182 2,871 5,036 1,998 Medical 1, ,399 2,342 4,029 1,829 Other non-food 3,996 5,487 8,244 13,766 52,283 13,647 Total 20,866 26,811 36,616 54,665 1,17,148 47,381 Total Impact on the Level and Pattern of Consumption and Savings of the Households 61

82 Table (Contd.) HIV households (in Rupees) Item Upto Rs. 20,000 20,001-30,000 30,001-41,000 41,001-84,000 84,001 and above Rural Cereals 3,006 4,212 4,565 6,329 10,056 4,233 Pulses , Other food 7,756 11,014 11,753 17,007 28,006 11,122 Total food 11,386 15,976 17,147 24,183 39,732 16,096 Fuel and light 1,318 1,844 2,606 3,491 6,756 2,110 House rent 644 1,272 3,503 1,873 1,200 1,360 Clothing & footwear 1,271 1,395 1,839 2,476 2,340 1,611 Durables , Education of children ,700 3, ,365 Medical 2,653 4,082 5,450 6,373 7,920 4,108 Other non-food 4,911 6,771 9,781 14,905 31,137 8,330 Total 22,858 32,702 43,722 57,862 92,445 35,538 Urban Cereals 2,244 3,412 3,933 5,760 8,700 4,724 Pulses ,124 1, Other food 5,961 11,012 12,082 17,428 26,240 14,252 Total food 8,782 15,146 16,986 24,311 36,443 19,945 Fuel and light 1,246 2,503 3,850 5,333 10,758 4,477 House rent 1,769 3,332 4,858 9,076 20,175 7,356 Clothing & footwear 797 1,257 1,548 2,605 4,938 2,136 Durables , Education of children ,006 2,035 3,425 1,484 Medical 1,864 2,937 1,972 2,977 9,088 3,356 Other non-food 3,531 7,725 8,285 16,035 52,792 15,527 Total 18,566 33,795 38,695 63,352 1,39,916 55,009 All Cereals , ,985 8,933 4,457 Pulses ,014 1, Other food 7,252 11,013 11,932 17,262 26,544 12,549 Total food 1,655 15,669 17,060 24,261 37,010 17,851 Fuel and light 1,298 2,088 3,283 4,607 10,068 3,190 House rent 960 2,035 4,240 6,237 16,903 4,094 Clothing & footwear 1,138 1,344 1,680 2,554 4,490 1,850 Durables , Education of children ,779 2,637 2,997 1,419 Medical 2,432 3,658 3,558 4,316 8,886 3,765 Other non-food 4,524 7,124 8,968 15,590 49,058 11,612 Total 12,654 33,106 40,988 61,188 1,31,731 44,418 Total 62 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

83 Table 5.8 Per capita item-wise annual consumption expenditure by income group Non-HIV households (in Rupees) Item Upto Rs. 20,000 20,001-30,000 30,001-41,000 41,001-84,000 84,001-1,30,000 Rural Cereals 887 1,433 1,588 1,896 1,898 1,608 Pulses Other food 2,385 2,530 2,652 3,497 4,447 2,998 Total food 3,516 4,249 4,538 5,691 6,722 4,901 Fuel and light , House rent Clothing & footwear Durables Education of children Medical , Other non-food 1,285 1,578 2,174 2,870 9,347 2,680 Total 6,103 7,272 8,505 11,412 21,673 9,852 Number of persons ,659 Urban Cereals 1,313 1,135 1,287 1,679 2,083 1,560 Pulses Other food 2,139 2,491 3,080 3,684 5,853 3,639 Total food 3,772 3,879 4,631 5,657 8,292 5,490 Fuel and light ,048 1,387 2,320 1,324 House rent , Clothing & footwear , Durables Education of children , Medical Other non-food 974 1,272 1,680 3,327 12,878 4,079 Total 6,537 7,035 9,288 13,197 28,450 13,523 Number of persons , ,278 All Cereals 1,012 1,329 1,472 1,777 2,017 1,586 Pulses Other food 2,312 2,517 2,818 3,600 5,351 3,294 Total food 3,592 4,120 4,574 5,672 7,732 5,173 Fuel and light ,110 1, House rent Clothing & footwear Durables Education of children , Medical Other non-food 1,193 1,471 1,983 3,120 11,618 3,325 Total 6,231 7,189 8,808 12,388 26,033 11,545 Number of persons 288 1, , ,937 Total (Contd.) Impact on the Level and Pattern of Consumption and Savings of the Households 63

84 Table (Contd.) HIV households (in Rupees) Item Rural Upto Rs. 20,000 20,001-30,000 30,001-41,000 41,001-84,000 84,001-1,30,000 Cereals 844 1,214 1,224 1,573 2,514 1,158 Pulses Other food 2,179 3,174 3,150 4,226 7,001 3,043 Total food 3,198 4,603 4,596 6,009 9,933 4,404 Fuel and light , House rent Clothing & footwear Durables Education of children Medical 745 1,176 1,461 1,584 1,980 1,124 Other non-food 1,380 1,951 2,622 3,704 7,784 2,279 Total 6,421 9,423 11,719 14,378 23,111 9,724 Number of persons Urban Cereals ,016 1,469 2,067 1,253 Pulses Other food 1,748 3,176 3,121 4,445 6,235 3,780 Total food 2,575 4,369 4,388 6,201 8,660 5,290 Fuel and light ,360 2,556 1,188 House rent ,255 2,315 4,794 1,951 Clothing & footwear , Durables Education of children Medical , Other non-food 1,035 2,228 2,140 4,090 12,545 4,119 Total 5,444 9,748 9,996 16,159 33,247 14,591 Number of persons All Cereals 794 1,129 1,109 1,511 2,141 1,202 Pulses Other food 2,061 3,175 3,134 4,357 6,362 3,385 Total food 3,029 4,517 4,481 6,124 8,870 4,815 Fuel and light ,163 2, House rent ,114 1,574 4,051 1,104 Clothing & footwear , Durables Education of children Medical 691 1, ,089 2,130 1,016 Other non-food 1,286 2,054 2,356 3,935 11,758 3,132 Total 6,155 9,543 10,766 15,446 31,572 11,981 Number of persons ,520 Total 64 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

85 Table 5.9 Average household savings by place of residence (in Rupees) Non-HIV households HIV households Rural Urban Total Rural Urban Total Cash/bank deposit 1, , , , Jewellery 1, , , , , Agricultural land Assets (house/plot) Financial (shares etc) 1, , , Total 3, , , , , , have a very small positive saving under financial assets, that is, shares etc. The fact that most of the positive savings of HIV households are in the form of cash/bank deposits indicates that they are concerned about the expenditure they might be called on to incur at any time. This may be a reason for shifting from fixed assets into more liquid assets. This movement away from fixed assets to relatively liquid assets has important long-term implications for the household as it implies a loss of wealth and hence lower capacity to deal with exogenous shocks in the future. The percentage of households that have negative savings is only about 3.3 percent in case of non-hiv households, whereas it is very high at 34 percent in the case of HIV households (Table 5.10). In keeping with this, the share of negative savers in income is 3.49 percent in non-hiv households while it is nearly 30 percent in HIV households. While about 53 percent of the non-hiv households are zero savers, this percentage in HIV households is about 45 percent. Because of this, while 43 percent of non-hiv households are positive savers, only 21 percent are positive savers in HIV households. No urban-rural divide is seen either in non-hiv households or HIV households among the different categories of savers. The difference in the saving pattern of HIV households and non-households shows that the long-term consequences of HIV and AIDS on total and household savings can be disastrous. The impact on savings at macro-level may yet become visible in the Indian scenario, given the fact that the proportion of households affected by HIV is still quite low although in absolute terms the number is very high. However, if the epidemic grows at the same alarming rate, as has been the case in many African countries, then the impact on savings would become visible even at the macro level. While it is not possible to assess from this survey, with any reasonable degree of accuracy, what the impact of the epidemic is on savings, at present, or what it would be in the future, the indications are that the impact on savings would be very significant. The main determinant of savings is the income of the household. All the income classes in the non-hiv households have a positive rate of savings although the rate is very small. The rate of savings has also increased with the increase in income. In the HIV households, the three lower classes of income have negative rates of savings. While in the lowest class The movement away from fixed assets to relatively liquid assets has important longterm implications for the household Impact on the Level and Pattern of Consumption and Savings of the Households 65

86 Table 5.10 Distribution of savers and non-savers (in Percentages) Non-HIV households HIV households percent share in percent share in Household Income Household Income All Negative savers Zero savers Positive savers Total Rural Negative savers Zero savers Positive savers Total Urban Negative savers Zero savers Positive savers Total of income upto Rs. 20,000 the rate is , it is in the income group of Rs. 30,001-41,000. In the income group of Rs. 41,001-Rs. 84,000 and Rs. 84,000 and above, the rate of savings is positive for HIV households as well. It is however, lesser than the corresponding rates for the non-hiv households. Even in HIV households, the rate of savings has increased with the increase in income. On the whole, while non-hiv households have a total rate of saving of 8.86 percent, HIV households have a rate of percent, and in every income class, the rate of savings of HIV households is less than that of the corresponding figure in non-hiv households. Although the non- HIV households in the sample are better off economically than the HIV households, this huge difference in savings can be explained only on the basis of the burden of diseases on HIV households. 5.3 Coping mechanism An important question for the HIV households is the method by which they can cope with the additional financial burden imposed on them because of the member/members of the household turning out to be HIVpositive. One method of coping with the financial burden/loss of income owing to the infection could be liquidation of assets or borrowings. In the case of HIV households, this question was specifically put to them; they were asked whether they had to borrow or liquidate any assets in order to cope with financial burden/loss of income after the family members tested positive. It needs to be noted that this is not to be compared to the change in savings presented above. This question relates to liquidation of assets/borrowings by HIV households 66 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

87 Table 5.11 Average household and per capita savings by level of income Non-HIV households (in Rupees) Annual income category Average household savings Per capita savings Rate of Rural Urban Total Rural Urban Total savings Upto Rs. 20, ,001-30, ,001-41,000 1,865 1,002 1, ,001-84,000 7,835 2,580 3,879 1, ,001 & above 20,472 28,381 27,441 2,996 5,052 4, Total 1,772 4,467 3, HIV households (in Rupees) Annual income category Average household savings Per capita savings Rate of savings Rural Urban Total Rural Urban Total Upto Rs. 20,000-2,336-6,167-3, ,750-1, ,001-30, ,867-1, ,001-41, ,001-84,000 2,948 4,726 4, , ,001 & above 45,000 61,423 57,317 11,250 14,742 13, Total 1,645 6,536 4, ,722 1, since the time a person was first detected positive and is not linked to tables on income, consumption, savings and borrowings, which relate to the last one year only. Also, a comparison with non- HIV households is by definition ruled out here. The response of the HIV households in the survey to the question of coping has been summarised in table More than half the households had either borrowed or liquidated assets for this purpose, the average amount generated being Rs. 27,588. The percentage of such Annual income category Table 5.12 Liquidation of assets or borrowings to cope with financial burden of HIV and AIDS after being tested positive Percentage of HH that borrowed or liquidated assets Percent share in liquidation of assets or borrowings Rural Urban Total Average borrowing or liquidation of assets per household (Rs.) Upto Rs. 20, ,469 20,001-30, ,770 30,001-41, ,758 41,001-84, ,437 84,001 & above ,182 Total ,588 Impact on the Level and Pattern of Consumption and Savings of the Households 67

88 households is, however, the highest for the lowest income group (58.27%), going down with the increase in the level of income of the households. The average amount borrowed or generated through liquidation of assets is highest for the highest income group. Considering that the percentage of households that borrow/liquidate assets declines with the rise in income, the average amount generated by higher income groups is likely to be linked to greater credit worthiness and better asset position of these households. While in the first three income categories, the borrowings or liquidation of assets are higher in the rural sample than in the urban, in the two higher categories of income, the borrowings or liquidation of assets has been higher in urban categories. From these tables, it is very difficult to make out whether asset holdings have any bearing on the amount borrowed or in their liquidation. In order to confirm the possibility of linkage between asset status and amount generated through borrowing or liquidation of assets, the latter is looked at by occupational grouping of the households (Table 5.13). Here, however, no trend is seen either in the percentage of households that have borrowed or liquidated assets or the amounts so generated. Although the amount generated by the nonagricultural wage earners is the least, agriculture wage labourers seemed to have raised as much as cultivators or even more than the salaried. Hence, it cannot be inferred straight away that possession of assets may have a bearing on the amount raised. Another aspect that needs to be looked into is the difference between HIV and non-hiv households, in terms of their credit needs. The borrowings of non-hiv households as well as HIV households in the last one year with reference to levels of income is presented in Table 5.14 below. The average borrowings per household presented here are only for those households that borrowed and not for all households. The borrowing per household is seen to go up with the income of the household in both non- HIV households and HIV households. However, while only 28 percent of non- HIV households have borrowed during the last one year, 59 percent of HIV households have resorted to borrowing. In the non-hiv households, the percent Table 5.13 Liquidation of assets or borrowings to cope with financial burden of HIV and AIDS after being tested positive by occupational classes Annual income category Percentage of HH that borrowed or liquidated assets Percent share in liquidation of assets or borrowings Rural Urban Total Average borrowing or liquidation of assets per household (Rs.) Cultivation ,816 Agri. wage labour ,132 Non-agricultural wage ,959 Self-employed nonagriculture ,159 Salaried ,274 Others ,447 Total , Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

89 of households that have borrowed has decreased as the income level has gone up; from about 55 percent in the income range of less than Rs. 20,000 to about 14 percent in the income range of Rs. 84,001 and above. However, in the HIV households, while the percentage is more than 60 percent for the first three income groups, it has decreased only by a small percentage in the next two higher income groups. The average borrowing per household is higher for HIV households in the first three income groups whereas it is higher in non-hiv households in the last two higher income groups. On the whole, while the average borrowing per household of those who have borrowed in the last one year is Rs. 8,749 in the case of non-hiv households, it is higher, at Rs. 9,811, for HIV households. 5.4 Poverty The direct impact of HIV on poverty and inequality has not been demonstrated empirically at the national or the state level for any country (UNDP, 2003). While this is an important issue, since purposive sampling was depended upon, this measure of poverty will be different from the true population parameter. The head count ratio has been estimated from the sample data in order to see the difference between non-hiv and HIV households in whether HIV and AIDS has differential impact on poor and non-poor. One important factor was defining the poverty line. The poverty line of obtained from Planning Commission for Rural and Urban areas has been updated by multiplying the Table 5.14 Borrowing in last one year Non-HIV households Annual income category Percentage of HH that Percent share in borrowings Average borrowing per borrowed Rural Urban Total household (Rs.)* Upto Rs. 20, ,732 20,001-30, ,445 30,001-41, ,661 41,001-84, ,308 84,001and above ,198 Total ,749 HIV households Annual income Percentage of HH Percent share in borrowings Average borrowing per category that borrowed Rural Urban Total household (Rs.)* Upto Rs. 20, , ,001-30, , ,001-41, , ,001-84, , ,001 and above , Total , Note:* Figures are only for those households that borrowed. Also, lendings by households have been ignored, so these are not net borrowings. Impact on the Level and Pattern of Consumption and Savings of the Households 69

90 growth of CPI in over of industrial workers in the case of urban poverty line & agricultural labourers in the case of rural poverty line. The updated poverty lines were Rs for rural areas, Rs for urban areas and Rs as the combined poverty line. Table 5.15 presents the estimates in terms of income poverty. The head count ratio for HIV households (30.07) is much more than that for non-hiv households (9.82). The poor households have a bigger household size than the nonpoor. In the present sample the non- HIV households have a bigger family size as compared to HIV households. The reason for smaller household size of HIV households could be many. It could be related to infected members of the household deliberately avoiding progeny, since they are often advised to do so by the counsellors. It could also be related to deaths in the family. Table 5.15 Distribution of households by income poverty in the sample Non-HIV households Percent share in Average household No. of Rate of Family Households Income Population Saving Income households saving size BPL , APL , ,1301 1, Total , ,878 1, Rural BPL , APL , , Total , , Urban BPL , APL , , Total , , HIV households Percent share in Average household No. of Rate of Family Households Income Population Saving Income households saving size BPL , , APL , Total , , Rural BPL , , APL , Total , , Urban BPL , , APL , Total , , Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

91 A very stark contrast is seen in the rate of savings of HIV households and non-hiv households. While the rate of savings for the BPL in HIV households is , it is 0.81 for the BPL in non-hiv households. The rate of savings for the APL in HIV households is 0.11, while it is 9.20 in non-hiv households. The below poverty line HIV households in the rural category seem to be the worst hit with a rate of savings of percent. However, in the urban HIV households, the rate of savings of both APL and BPL households is negative. Table 5.16 presents the share of the poor in the total population in terms of consumption poverty. Here again, it is seen that the head count ratio of HIV households (16.38) is much higher than that of non-hiv households (9.82). It is seen that the per capita expenditure of HIV households is slightly more than that of non-hiv households. However, Table 5.16 Consumption poverty in the sample Non-HIV households Poverty Percent share in No. of Per capita Family group Households Income Population households expd size BPL , APL ,116 11, Total ,203 10, Rural BPL , APL , Total , Urban BPL , APL , Total , HIV households Poverty group Percent share in Households Income Population No. of households Per capita expd Family size BPL , APL , Total , Rural BPL , APL , Total , Urban BPL , APL , Total , Impact on the Level and Pattern of Consumption and Savings of the Households 71

92 the expenditure of households that are below poverty line in HIV households is less than that of the corresponding group in non-hiv households in spite of the fact that the household size is smaller in HIV households. Within their expenditure, they have to allocate a heavy sum for medical expenses. This would imply that although all HIV households bear the financial burden of the disease, the poor among them are the worst sufferers. Tables 5.17 and 5.18 give the income poverty and consumption poverty in the sample by occupational groups for non- HIV households and HIV households. 5.5 Observations The major difference in consumption expenditure of non-hiv households and HIV households is that the medical expenses of HIV households are much higher than that of non-hiv households, more than two times the per capita medical expenses of non-hiv households. This is because households have to cope with the medical expenses related to Table 5.17 Income poverty in the sample group by occupational categories Non-HIV households Occupation Poverty head count ratio No. of poor persons No. of poor households Annual per capita expenditure of poor All Cultivation Agri. wage labour , Non-agricultural wage , Self-employed nonagriculture , Salaried , Others , Total , HIV households Occupation Poverty head count ratio No. of poor persons No. of poor households Annual per capita expenditure of poor All Cultivation ,759 Agri. wage labour ,661 Non-agricultural wage ,272 Self-employed nonagriculture ,620 Salaried ,126 Others ,471 Total , Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

93 Table 5.18 Consumption poverty in the sample group by occupational categories Non-HIV households Occupation All Poverty head count ratio No. of poor persons No. of poor households Annual per capita expenditure of poor Cultivation ,773 Agri. wage labour ,112 Non-agricultural wage ,441 Self-employed non-agriculture ,267 Salaried ,212 Others ,594 Total ,078 HIV households Occupation All Poverty head count ratio No. of poor persons No. of poor households Annual per capita expenditure of poor Cultivation ,994 Agri. wage labour ,388 Non-agricultural wage ,060 Self-employed nonagriculture ,576 Salaried ,224 Others ,339 Total ,785 the epidemic on their own rather than through support from the government. These households need much greater support from the government in terms of access and affordability of medical care. It is also seen that HIV households are spending much larger amounts on house rent than non-hiv households. Many of them may have been forced to sell off their houses in order to pay for medical attention or to cope with loss of income due to absence from work or loss of employment. Special attention has to be directed to the HIV households who have to reallocate consumption expenditure to medical expenses out of a lower level of consumption expenditure, mainly by reducing food expenditure. In order to meet the heavy burden of medical expenditure, the HIV households are undercutting the expenditure on other items and one of the sectors being affected is that of education which may later have repercussions on the household income. The results also show that not only are the average and per capita savings of HIV households lower than that of non-hiv households for lower income groups, but Impact on the Level and Pattern of Consumption and Savings of the Households 73

94 While the burden of illness is being borne by all families whose members are HIVpositive, it is the poor among these who are worst hit it also results in a much larger negative impact on aggregate savings. This suggests that the long-term consequences of HIV and AIDS on total and household savings can be disastrous even though the impact may not be visible at this point in the Indian case given the fact that the proportion of households affected by HIV is still quite low. More than half of the households had either borrowed or liquidated assets to cope with the financial burden after being detected HIV-positive. The percentage of such households, however, was very high for the lowest income group, going down with the level of income of the households. The average amount borrowed or generated through liquidation of assets, however, was higher for higher income groups. While about 28 percent of the non-hiv households resorted to borrowing in the last one year with the average borrowing per household at Rs. 8,749, nearly 59 percent of the HIV households did the same with the average borrowing per household being a little higher, at Rs. 9,811. A stark contrast is seen in terms of rate of savings between poor HIV and poor non-hiv households. The former group has a negative rate of savings while the rate is positive for the latter. The poor among HIV households are under much serious constraint of trying to meet their consumption expenditure. This suggests that the poor are put under greater stress due to the AIDS epidemic, including those members of the households who are not HIV-positive. On the whole, it may be stated that in order to bear the burden of expenditure on health, the households affected by HIV are reducing expenditure on other important items like education of children. Further, to meet this additional burden they are resorting to liquidation of assets and borrowings, which in turn affects their savings severely. While the burden of illness is being borne by all families whose members are HIVpositive, it is the poor among these who are worst hit. It appears that HIV and AIDS could increase the incidence as well as severity of poverty. 74 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

95 Impact of HIV and AIDS on the Education of Children

96 76 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

97 Chapter 6 Impact of HIV and AIDS on the Education of Children HIV and AIDS affects not only the life of the person afflicted by it, but the entire household. The economic impact of the burden is felt first since the infection affects mostly those in their most productive years and the illness has adverse effect on the earning capacity of the HIV-positive person, apart from the burden of treatment of opportunistic infections that they are generally prey to. Because of the stigma attached to the infection, the affected as well as the family have to bear with the discriminatory practices of society. The household is generally under the emotional strain of taking care of the sick. Apart from all these, another very important aspect which the infection can affect, is the education of children in the household. This can happen in various ways: a) The children could be forced to give up studies to earn and take the place of the breadwinner in the family. One of the case studies in the state of Tamil Nadu is about a household where the son is disgruntled because he has had to give up his studies and work since the family s income has been affected because of their father s being HIVpositive. b) In poor households, the expenses on the education of poor children could be curtailed to balance the increasing burden of illness of the HIV affected person. c) There could be instances where school going children have to act as caregivers in the family and look after their parents. d) Because of the stigma associated with the infection, children may not get access to education. Although education, which is a means of achieving skills and therefore a livelihood, is important to all, it is more important in the context of HIV and AIDS. Experts have coined the term education vaccine to indicate that education is the first line of defence against the spread of HIV, and has been proved as an important means of preventing HIV and AIDS (World Bank, 2002; Boler Tania and Kate Carroll, undated; Vandermootele, Jan and Enrique Delamonica, 2000). However, it has also been assumed in literature that HIV and AIDS would result in lower investment in education of children (Bell, Devarajan and Gorbach, 2003). The focus of the present chapter is on the impact of HIV and AIDS on the demand for and access to education. The impact on the schooling of children in the state of Tamil Nadu is examined based on the results of the survey. The household Impact of HIV and AIDS on the Education of Children 77

98 impact is measured not only by asking whether the child goes to school, but also by observing the child s school attendance, the type of school attended, the reasons for dropping out, etc. This data relates the presence of HIV and AIDS in a household to the ability to continue educating the children and tries to capture the gender differentials, if any. This study also tries to compare the enrolment rates and dropout rates of children belonging to two sets of households, i.e., households with the presence of an HIV-positive individual and households without any such individual. Table 6.1 Ever and current enrolment of children in HIV and non-hiv households (in Percentages) Age 6-14 years Boys Girls Total F/M Ever enrolled HIV households Non-HIV households Currently enrolled HIV households Non-HIV households Number of children HIV households Non-HIV households Age years Ever enrolled HIV households Non-HIVhouseholds Currently enrolled HIV households Non-HIV households Number of children HIV households Non-HIV households Since the survey includes both HIVpositive households and non-hiv households, by keeping the socioeconomic characteristics of the two sets of households similar, a cross-sectional analysis of the differences in children s education in the two sets of households has also been also attempted. This chapter concludes by drawing inferences about the future/higher education of the children based on the answers obtained for the open ended questions as well as on the focus group discussions conducted with the members of the Network of Positive People. 6.1 Ever and current enrolment rates The ever and current enrolment rates for children in the age group of 6-14 years, which corresponds to class I-VIII, and age group years which corresponds to classes IX to XII, are presented in Table 6.1. The gross enrolment rate is calculated as the number of children in the age group who were ever enrolled as a percentage of total number of children in that age group. The current enrolment rate is calculated by taking the number of children who are currently studying, as a percentage of the total number of children in that age group. In the age group of 6-14 years, the ever enrolled rates are slightly less than 100 percent but are almost similar in both HIV and non-hiv households. Also, there is no noticeable difference between the enrolment rates of boys and girls. However, while almost all the enrolled children seem to be currently studying in non-hiv households, the current enrolment of children in HIV households is lesser than ever enrolled rates and noticeably so in the case of girls. In the age group of years, there is 100 percent enrolment of all children, HIV or non-hiv, boys or girls. The current enrolment rates in both categories of 78 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

99 households have come down. However, while the current enrolment rate for non- HIV households has come down from 100 percent to 86.6 percent for both boys and girls, in HIV households the current enrolment rates for boys has come down to 76.7 percent; but it has reduced to nearly half (51.7%) in the case of girls. The table clearly indicates that while most of the children from HIV households are enrolled in schools, the continuation of their studies is affected, more so for the girls and especially in the age group of years. 6.2 Dropout rates and number of years of schooling Two observations are evident from Table 6.2. Firstly, the dropout rates are lower for the non-hiv households as compared to HIV households. While the dropout rate for the children of HIV households is 4.8 percent, the rate is lower, at 0.8 percent, for the children belonging to non-hiv households with reference to the age group of 6-14 years. The difference is more pronounced in children belonging to the age group of years. While the dropout rate for children from HIV households is 35.6 percent, it is 12.5 percent for children from non-hiv households. Secondly, in non-hiv households the dropout rate for girls is slightly lower than that for boys in the age group of 6-14 years and the reverse is true in the age group of years. However, in the case of HIV households, the dropout rates are higher for girls in both age groups. Interestingly, the average number of years of schooling completed by the children who had dropped out of school has worked out to be more or less the same for the children of HIV and non-hiv households. 6.3 Ever and current enrolment rates by household income There is no clear trend as regards ever enrolment rates for children in the age The average number of years of schooling completed by the children who had dropped out of school has worked out to be more or less the same for the children of HIV and non-hiv households Table 6.2 Dropout rates and number of years of schooling completed by dropout children (in Percentages) Age 6-14 years Boys Girls Total F/M Percentage of children who have dropped out of school HIV households Non-HIV households Average number of years of schooling completed by dropouts HIV households Non-HIV households Age years Percentage of children who have dropped put of school HIV households Non-HIV households Average number of years of schooling completed by dropouts HIV households Non-HIV households Impact of HIV and AIDS on the Education of Children 79

100 Annual household income (Rs) Age 6-14 years Ever enrolled group of 6-14 years whether they are from HIV or non-hiv households, with reference to the household income categories. On the other hand, for children belonging to the age group of years, it is seen that there is 100 percent enrolment of both boys and girls in both types of households in all Table 6.3 Ever & current enrolment rates for children by annual household income categories (in Percentages) HIV households Non-HIV households Boys Girls All Boys Girls All Upto 20, ,001-30, ,001-41, , Above 84, Currently enrolled Upto 20, ,001-30, ,001-41, , Above 84, N Age years Ever enrolled Upto 20, ,001-30, ,001-41, , Above 84, Currently enrolled Upto 20, ,001-30, ,001-41, , Above 84, N the different income groups. No clear trend is seen in the current enrolment rates of children from either HIV or non- HIV households in either of the two age groups. However, what is noticed is that the current enrolment rate of children in the age group of years is very low in the case of children from HIV households, especially girls belonging to the first two income groups. This tallies with the existing perception that the burden of HIV is heavier on the poorer sections of society. It may probably be correct to assume that the burden of the diseases on households is responsible for such low rates of current enrolment. However, one surprising result is that the current enrolment is 100 percent, both for boys and girls, only in HIV households in the highest income category of Rs. 84,000 and above, for the age group of years. 6.4 Ever and current enrolment rates by level of education of household head The relationship between the level of education of the household head and the enrolment of children in school has emerged clearly (Table 6.4). In the case of children in the age group of 6-14 years, the ever enrolment as well as the current enrolment rates for both types of households mostly go up with the rise in the level of education of the household head. At lower levels of education, both the ever and current enrolment rates are generally lower for the children belonging to the HIV households as compared to non-hiv households. However, when the household head is a graduate/diploma holder, the ever enrolment rate and current enrolment rates are higher in HIV households and touch 100 percent. This could probably be because they realise the importance of educating their 80 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

101 children, particularly in their situation, and think of it as an investment for the future. In the case of children in the age group of 15-18, ever enrolment rates are 100 percent irrespective of the gender of the child or the type of household. However, from the current enrolment rates of both types of households, it is clearly seen that the rates go up with the level of education of the household heads. At the same time, at every level, the enrolment rate for children from HIV households is less than that for non-hiv households. No gender gap is noticed in either the ever enrolment rates or current enrolment rates in HIV and non-hiv households for children in the age group of 6-14 years. In the case of children in the age group of years, the ever enrolment rates are 100 percent irrespective of gender and household. It is only in respect of the current enrolment rates of these Table 6.4 Ever and current enrolment rates for children by level of education of household head (in Percentages) Education of household head HIV households Non-HIV households Boys Girls All Boys Girls All Age 6-14 years Ever enrolment rate Illiterate Upto middle High school/higher secondary Graduate/diploma Current enrolment rate Illiterate Upto middle High school/higher secondary Graduate/diploma N Age years Ever enrolment rate Illiterate Upto middle High school/higher secondary Graduate/diploma Current enrolment rate Illiterate Upto middle High school/higher secondary Graduate/diploma N Impact of HIV and AIDS on the Education of Children 81

102 The percentage of girls from HIV households going to government schools is much higher than that of girls from non-hiv households children from HIV households that a marked change in the rates for boys and girls is seen. When the household head is illiterate, the current enrolment rate for girls (25%) is one-third of that for boys (75%). However with increased level of education of the head of the household, the difference in the rates is seen to decrease and is 84.6 percent for boys and 76.9 percent for girls when the head of the household is educated upto high school. The sample does not have any household where the head of the household having children within this age group is a graduate or a diploma holder. 6.5 Type of school attended To a large extent, the type of school attended by children is indicative of the economic status of a household. In the present sample however, with reference to children of both the age groups, the percentage of children going to government schools is almost the same for both types of households. It is very marginally higher for HIV households; 70.2 percent for HIV households & 68.6 percent for non-hiv households in the 6-14 years age group and 64.6 percent for HIV households & 64.2 percent for non-hiv households in the years age group. Irrespective of the type of household, for children in the age group of 6-14 years, the percentage of children going to government schools works out to be higher for girls as compared to boys, although the difference is marginal in non-hiv households. However, in the case of the children belonging to the age group of years, the percentage of girls going to government schools is slightly higher than that of boys in HIV households, while the percentage of girls attending government schools is much lower than that of boys in non-hiv households. However, in both age groups, it is seen that the percentage of girls from HIV households going to government schools is much higher than that of girls from non-hiv households. 6.6 School attendance Table 6.5 Distribution of currently enrolled children by type of school attended (in Percentages) Type of school HIV households Non-HIV households 6-14 years Boys Girls All Boys Girls All Government Private Informal/others Total years Government Private Informal/others Total The average number of days of absence from school during the last academic session is more for children belonging to HIV households, as compared to non-hiv households (Table 6.6), for children belonging to both age groups. The average number of days absent from school works out as 9.7 for the children of HIV households and 5.5 for the children belonging to non-hiv households in the age group of 6-14 years and 8.3 days for children from HIV households and 5.5 for children from non-hiv households in the age group of years. Except for children in the age group of years from HIV households, it is seen that girls are absent for lesser number of days than boys. 82 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

103 Table 6.6 School attendance of children In the last academic year by type of household 6-14 Years HIV households Non-HIV households Boys Girls All Boys Girls All No. of days absent during last academic year (averages) Reasons for absence (%)* 1. Child unwell Parent unwell Went out of station Not paid fees/not allowed to attend School environment not conducive Child refused to attend Had to attend social function Had to look after younger siblings/attend to HH chores Others years No. of days absent during last academic year (averages) Reasons for absence (%)* 1. Child unwell Parent unwell Went out of station Not paid fees/not allowed to attend School environment not conducive Child refused to attend Had to attend social function Had to look after younger siblings/attend to HH chores Others * The percentages do not add to 100 due to multiple answers. There are interesting differences in the reasons for absence between the two types of households. The percentage of children not attending school due to ill health of the parents is obviously much higher for the children belonging to HIV households in both the age groups. The other reason is non-payment of fees/not being allowed to attend. In both types of households, another important reason for not attending school seems to be the child himself/herself being unwell, going out of station, or attending social functions. 6.7 Reasons for discontinuation of schooling The survey results indicate that the presence of an HIV infected individual in a household does affect the children s schooling. Though the enrolment of children in schools is affected only to a small extent, the continuation of schooling emerges as a greater problem. Generally, it is found that the reasons for children dropping out of school are similar for both HIV and non-hiv households. A number of children from Impact of HIV and AIDS on the Education of Children 83

104 In both HIV and non-hiv households, a significant percentage reported that the various incentives provided by the government have influenced their decision to enrol the children in school both households have dropped out because they are unable to afford the fees as they belong to the lower economic strata of society. While a higher number of children from HIV households have dropped out due to reasons like having to look after the sick at home, take care of younger siblings and to earn a living, in non-hiv households, the percentages under these categories are lower. In the years age group, a higher number of children in non-hiv households have dropped out because they have failed or because of lack of interest in studying or because education is considered unnecessary. A number of girls have also discontinued studying, as there are no separate schools for girls. In both HIV and non-hiv households, a significant percentage reported that the various incentives provided by the government have influenced their decision to enrol the children in school. The most popular scheme seems to be the Mid-day Meals Scheme and the other incentives mentioned include free books, hostel accommodation and free school uniform supplied by the government to children belonging to economically weaker sections of the society. Interestingly, no HIV household has reported stigma and discrimination as reasons for discontinuation of schooling. Does this mean there is no discrimination in the schools? The focus group discussions conducted with PLWHA provide some insight into this situation. Most of the parents mentioned that they did not have any problem in getting their wards admitted to school. In the case of children studying in public schools, teachers as well as parents of other students seemed to know about their status. However, one participant whose children were studying in an English-medium private school had not revealed his status to anybody, as he did not think that it was necessary to do so. Incidentally, in the present study, fifteen children (8 boys and 7 girls) in the age group of 6-14 years were HIV-positive. There were no HIV-positive children in the age group of years. Of these fifteen children, fourteen were enrolled in school. One boy, however, could not get admission because of his HIVpositive status. One boy and two girls have dropped out, the boy, because he had to look after his parents (obviously in the later stages of the infection), and the girls, because there was no separate school for them. 6.8 Observations One of the genuine concerns of HIVpositive parents is about the future of their children. How long can they continue to educate their wards? Interestingly, most of the parents, even if they themselves were not very well educated, seem very keen on educating their children. They seem to have tremendous faith in education and think that education would improve the employment prospects of their children. They want to educate their children for as long as they can and most of them feel that in order to get employment, education upto graduation level is necessary. Although the parents may not live to reap the benefit of their children s education, they are keen to educate them. However, not all can afford to do so. Only a small percentage mentioned that they could afford to educate their children beyond middle school. In the FGD conducted in Tamil Nadu, a number of parents who desired to educate their children had hopes that the Network or some other organisation would take care of the education of their children. In fact, two participants mentioned that they 84 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

105 had enrolled their children in a boarding school run by an NGO specifically for the children of HIV-positive parents. Education is seen as the means to rise above one s situation. With the curtailment of education, avenues of opportunities available to others become unavailable to children from families affected by HIV and AIDS. Hence, concerted efforts ought to be made to ensure that the education of these children is continued. This could either be in the form of monetary aid or by giving a helping hand in looking after the sick in these households. Impact of HIV and AIDS on the Education of Children 85

106

107 Impact of HIV and AIDS on Health

108 88 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

109 Chapter 7 Impact of HIV and AIDS on Health There are several ways in which PLWHA and their households are likely to be affected by the infection. Economically, apart from the burden of medical treatment, since HIV affected individuals are in their most productive years, the affected households are also likely to suffer loss of income either due to absence from work because of illness or, in the worst case, by loss of employment. Socially, there is a stigma attached to the infection and households with a PLWHA are generally discriminated against. Taking care of an AIDS patient is also an emotional strain on the members of the household. In many cases the presence of HIV means that the household will dissolve, as parents die and children are sent to relatives for care and upbringing. In the health sector, the epidemic brings additional pressure. As the epidemic matures, the demand for care for PLWHA rises. Healthcare services may face different levels of strain depending on the number of people who seek services, the nature of their need, and the capacity to deliver that care. This chapter examines the pattern and burden of morbidity on the HIV affected households in the state of Tamil Nadu. The details about the opportunistic infections suffered, the type of treatment sought and the out-of-pocket expenditure incurred on the treatment were gathered from a sample of 478 PLWHA. In addition, the survey also collected information on the prevalence of non-hospitalised illnesses and the hospitalisation cases for all the members of HIV as well as non- HIV households (the controlled group), to compare the disease burden on the two types of households. The findings of the survey are presented in the following sections. 7.1 Prevalence rate of illness Prevalence rates of illnesses HIV and non-hiv households The prevalence rates are calculated for both non-hospitalised illnesses and hospitalised cases from the information collected from all the members of the HIV and non-hiv households. In all, there was a sample of 410 HIV and 1,203 non- HIV households and the total number of persons involved was 1,520 for HIV and 4,937 for non-hiv households. The prevalence rate of non-hospitalised illnesses is calculated on the basis of reports of illnesses by the households in the month preceding the date of interview. The non-hospitalised illnesses include acute as well as chronic illnesses that were prevalent during the onemonth reference period. The prevalence rate of hospitalisation is calculated based on the number of hospitalisation cases Impact of HIV and AIDS on the Health 89

110 reported for the household members during the year preceding the date of interview. These are presented in the Tables 7.1 and 7.2. The tables clearly indicate that the burden of non-hospitalised as well as hospitalised illnesses is very heavy on HIV households in comparison with non-hiv households. In the case of nonhospitalised illnesses, the prevalence rate of illnesses in the age groups of 0-14 and of is high for HIV households; the prevalence rate in the age group of 60 years and above is slightly higher in the case of non-hiv households. In the case of hospitalised illnesses, the reported number of cases is higher for HIV households for all age groups. What stands out is that in the age group of which comprises the largest section of PLWHA, the burden on HIV households is nearly three and a half times that on non-hiv households with respect to non-hospitalised illness and is about five times greater in the case of hospitalised illnesses. On the whole, both, the rate of illness and the number of hospitalisation cases, are lesser for women than for men in both types of households, the exception being the age group of 0-14 in HIV households and that of 60+ in both HIV and non-hiv households. Table 7.1 Prevalence rate of illness for the one-month reference period by type of households and age and sex (Per 000 population) Age group HIV households Non-HIV households Male Female Total Male Female Total , , , , ,056.5 All ages 1, Number of persons ,520 2,587 2,350 4,937 Table 7.2 Reported number of hospitalisation cases in the reference year by type of households and sex (Per 000 population) Age group HIV households Non-HIV households Male Female Total Male Female Total All ages Number of persons ,520 2,587 2,350 4, Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

111 7.1.2 Prevalence rates of illnesses for PLWHA The prevalence rates for hospitalised and non-hospitalised illnesses are calculated for the PLWHA on the basis of the stage of their infection and the number of years since the infection was detected. The WHO classifies the HIV infection into four clinical stages based on the diseases and the performance scale. At stage I, it is asymptomatic and the individual would be able to carry on normal activities. At the clinical stage II, it is symptomatic (with symptoms like weight loss of <10 percent, recurring upper respiratory tract infections and other illnesses), but the person is able to carry on normal activities. At stage III, along with symptoms like weight loss, the individual may suffer from problems like unexplained chronic diarrhoea for more than a month, unexplained prolonged fever, oral candidiasis (fungal infection), pulmonary tuberculosis or several bacterial infections and/or would be bedridden for less than 50 percent of the days during one month. In the last stage i.e. stage IV, along with the wasting syndrome, the person may suffer from any of the diseases like toxoplasmosis, pneumonia, herpes, Kaposi s sarcoma (skin cancer), Cryptosporidiosis (brain infection) and others and/or be bedridden for more than 50 percent of the days during one month. The prevalence rate of both nonhospitalised and hospitalised illnesses is seen to increase with the increase in the stage of infection. The increases are also marked in size from one stage to another, with the exception in the number of non-hospitalised illnesses in stages II and III. The rates do not show any trend when analysed on the basis of the numbers of years since the HIVpositive status was detected. In fact, in case of non-hospitalised illnesses, the The prevalence rate of both non-hospitalised and hospitalised illnesses is seen to increase with the increase in the stage of infection Table 7.3 Prevalence rate of illness and hospitalisation for PLWHA by stage of infection and number of years back HIV status detected Nonhospitalised Illnesses during last one month Hospitalisation during last one year (Per 000 population) Number of persons Stage of infection Stage I Stage II 1, Stage III 1,786 1, Stage IV 2,534 2, All 1, Number of years back detected Upto one year 1, to 5 years 1,667 1, > 5 years 1, All 1, Impact of HIV and AIDS on the Health 91

112 The manifestation of infections in AIDS patients depends on the level of immunity, which is reflected by the CD4 and T cell count prevalence rates seem to be decreasing as the number of years since the HIVpositive status was detected increases. The prevalence rates was the highest even for those who had tested HIVpositive in the last one year. It is possible that although they tested positive during the last year, they might have been infected earlier. While the stage-wise details have been given for 552 people, the rates on the basis of the number of years since detection of infection have been given only for 478 people. Of the 410 HIVpositive households interviewed, there emerged 552 cases of PLWHA. These also included children in the age group of 0-14, and between teenage and adulthood. The interviews, however, were held only with adult PLWHA. Also, not all of the adults came forward for the interview and hence information could be collected only from 478 persons. This explains the difference in the number of people for whom the results have been tabulated. The HIV virus causes chronic infection and the course of the infection would vary from individual to individual. Some persons may develop immuno deficiency within two to three years and others may remain AIDS free for years. The manifestation of infections in AIDS patients depends on the level of immunity, which is reflected by the CD4 and T cell count. A sample of 478 PLWHA 269 men and 209 women in Tamil Nadu were interviewed in detail to find out about the nature and frequency of illnesses suffered by them, their health seeking behaviour and the out-of-pocket expenditure incurred by the households in treating the OIs. These findings are presented below. Table 7.4 Frequency of OIs reported by PLWHA by stage of HIV infection (non-hospitalised illness episodes) Number of times ill in the last one year Average number Frequently ill (%) Continuously ill (%) Number of times iii in the last one month Average number Frequently ill (%) Continuously ill (%) By sex Male Female By stage of infection Stage Stage Stage Stage No. of years back detected Last one year years >5 years All Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

113 7.2 Details about nonhospitalised illness episodes Frequency of illnesses (Non-hospitalised) HIV weakens the body s immune system i.e. the ability to fight diseases and as a result, PLWHA can get many infections, which are called opportunistic infections (OIs). This nomenclature emerges from the fact that they take advantage of the opportunity offered by the weakened immune system. The prevention and treatment of OIs is an important component of management of HIV. The sample PLWHA were asked the number of times they had fallen ill during the periods of a year and a month previous to the interview, and the same have been represented as last one year and last one month in Table 7.4. Nearly 19 percent reported that they were frequently ill during the one-year period and about 14 percent during the one-month period. A small percentage reported being continuously ill in the one-year period (2%) and in the one-month period (1%). For the remaining, i.e. those who were not either frequently or continuously ill, the average number of times that they had fallen ill during one year and one month have been calculated. It is seen that these percentages and the average numbers are generally lesser for women than for men. These calculations have also been made with reference to the stage of infection and the number of years since the HIV-positive status was detected. Although in the case of the number of times the PLWHA has been ill in the last one month, the average number of non-hospitalised illness episodes seem to be increasing with an increase in the stage of illness; no such trend is seen when the average number of illnesses in the last one year is considered. However, the percentage of PLWHA who are continuously ill is increasing with increasing stages of infection in both the last one month and the last one year. No trend seems to be emerging from these data when analysed on the basis of the number of years since the HIVpositive status was detected. More detailed information about the illnesses suffered by the PLWHA during the last one month prior to the date of interview was collected with regard to the nature of illness, the type of treatment sought and the amount of expenditure incurred on the treatment of these illnesses Nature of illnesses (Non-hospitalised illness episodes) About sixty four percent of the men and one-fourth of the women had taken the HIV test because they had been suffering from prolonged illness. Table 7.5 shows that of the total number who went in for the HIV test after prolonged illness, nearly 34 percent men and 39 percent women have reported fever as the main cause. The other main illnesses are prolonged bouts of loose motion/diarrhoea and TB. The sample PLWHA were asked the number of times they had fallen ill (nonhospitalised illness) during the reference period of a month and details of upto two episodes per sample were collected. From the 478 PLWHA interviewed, there emerged 566 illness episodes. The percentage distribution of these 566 illness episodes reported by the sample PLWHA in the one month reference period according to nature of illness is presented in Table 7.6. HIV weakens the body s immune system ie, the ability to fight diseases and as a result, PLWHA can get many infections, which are called opportunistic infections (OIs) Impact of HIV and AIDS on the Health 93

114 Table 7.5 Distribution of PLWHA reporting prolonged illness as a reason for going in for HIV test (in Percentages) Male Female Percent reporting prolonged illness Nature of illness 1 Respiratory infection Malaria Fever Headache, bodyache etc Weakness Typhoid Gynaecological problem Loose motion/diarrhoea Jaundice TB Skin diseases Sexually transmitted diseases Others All Table 7.6 Distribution of non-hospitalised illness episodes by nature of illness reported (in Percentages) Nature of illnesses Male Female Total 1 Respiratory infection Malaria Fever Headache, bodyache Weakness Loose motion/diarrhoea Typhoid Jaundice TB Skin diseases Sexually transmitted diseases/rti Gynaecological problems Others Total Number of illness episodes Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

115 Again, it is seen that fever remains the most highly reported illness (33%). Loose motion, diarrhoea, respiratory infections, TB and headache, bodyache and weakness are the other illnesses commonly experienced in the one month reference period No treatment of illness The OIs result in more rapid decline in CD4 T-cells and hence treatment for opportunistic infections is required in order to reduce the suffering of the PLWHA and to allow them to lead an active life. The survey results show that not all illness episodes got treated. It is seen that generally treatment has been sought in all except 7.6 percent illness episodes. While nearly 6 percent of the illness episodes went untreated in the case of men, the percentage was higher, at 10.6 percent, for women. The number of illness episodes for which treatment was not taken was 20 in respect of male PLWHA and 23 in respect of female PLWHA. Among both men and women, the major reason for not taking treatment was that the illness was not considered serious. However, in the case of women, 13 percent of illness episodes did not get treated because of economic constraints; this has not been an issue in the case of men. This points out not only to the gender bias that is prevalent in society but also probably to the financial conditions being faced by HIV-positive women, many of whom are widows, and a few whom have been deserted. Further, in the case of women, there have been a couple of cases where no doctor was willing to treat the illness Duration of illness episodes, treatment etc Of the 566 episodes (Table 7.6), treatment was sought for 523 episodes. For each of these illness episodes reported by the PLWHA during the one month reference period, information regarding the number of days each episode lasted, the duration of treatment, the number of days the patient was bedridden and the number of days the patient did not go to work were obtained. The same have been presented in Table 7.8 below. Among both men and women, the major reason for not taking treatment was that the illness was not considered serious Table 7.7 Illness episodes receiving no treatment and reasons for no treatment for PLWHA Percentage of Illness episodes for which no treatment was sought Reasons for not seeking treatment (%) (in Percentages) Male Female All Illness not considered serious No medical facility nearby No doctor was willing to treat Financial constraints Lack of time/long waiting No cooperation from the family Others Total Impact of HIV and AIDS on the Health 95

116 Table 7.8 Average number of days ill, bedridden and not going to work during each non-hospitalised illness episode in the last one month Number of days ill % reporting frequently/ continuously Ill Duration of treatment No. of days bedridden (in Percentages) No. of days not going to work By stage of infection Stage Stage Stage Stage All As the household income increases, treatment is sought more and more from private health services Of the total episodes reported, 36 percent of PLWHA were either frequently or continuously ill. In the case of the remaining episodes, on an average, the illness was of about eight days duration. Treatment was taken for seven days; the average number of days they were bedridden was about 3.4 and the number of days they were unable to go to work was around nine days for those who were employed at the time of the survey. The number of days the illness lasts, the number of days spent bedridden, and the number of days of absence from work have generally increased with increase in the stage of infection. The percentage reporting frequent/continuous illness decreases in the third and fourth stages of infection. One of the possible reasons could be that a number of respondents might have been hospitalised in stages three and four Source of treatment The percentage distribution of illness episodes for which treatment was sought is presented in Table 7.9 with reference to the source of treatment. In nearly 54 percent of the illness episodes, treatment was taken from government health facilities while in 35 percent of the episodes, private facilities were responsible for the treatment. In only about 10 percent of episodes, the treatment was taken from NGOs. While in about 74 percent of the episodes, women took treatment from government hospitals and NGOs, the percentage of men for such treatment has been lesser, at 57 percent. However, while only 25 percent of women have taken treatment from private health facilities, the percentage of men availing this facility is 41 percent. This could be either because in a family more importance is given to the man since he is generally the breadwinner or because many of these HIV-positive women do not have the support of their husband/family and hence lack the finances needed to go to private health facilities. The other category includes episodes in which the affected persons directly purchased medicines from chemist shops or resorted to home remedies. An analysis of the source of treatment of non-hospitalised illness based on the annual household incomes of the PLWHA is given in Table As can be seen, as the household income increases, treatment is sought more and more from private health services. 96 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

117 Table 7.9 Distribution of non-hospitalised illness episodes by source of treatment for male and female PLWHA (in Percentages) Source of treatment Male Female All 1. Government Private Charitable trust/ngo Faith healer/religious person Others Total Number of episodes Table 7.10 Distribution of non-hospitalised illness episodes by source of treatment and by annual household income groups Source of treatment Upto 20,000 20,001-30,000 Annual household income (Rs.) 30,001-41,000 41,001-84,000 (in Percentages) >84,000 All 1 Government Private Charitable trust/ngo Faith healer/religious person 5 Others Total It is seen that at the lowest level, treatment has been sought mostly from government facilities and NGOs (72% in toto). However, going upwards on the income scale, this percentage decreases and the percentage of episodes for which treatment has been received from private facilities increases. At the highest income stage level, only 28 percent of the episodes have been treated at government facilities, and the remaining 72 percent have received treatment at private health facilities Out-of-pocket expenses incurred on treatment In Table 7.11, the average expenditure incurred by the PLWHA on the treatment of illness episodes is presented with reference to the source of treatment. The expenditure incurred by households includes amount spent on fees, medicines and clinical tests, transport costs, as well as bribes and tips. It is seen from the table that whatever the source of treatment, the households have to make a certain Impact of HIV and AIDS on the Health 97

118 Table 7.11 Expenditure incurred by PLWHA for treatment of non-hospitalised illness episodes by source of treatment (in Rupees) Source of treatment Rural Urban Total Male Female Male Female Male Female 1 Government Private Charitable trust/ngo Faith healer/religious person Others All There is a gender difference in the average expenditure incurred per illness episode irrespective of the source of treatment minimum amount of expenditure. While the average expenditure per episode has been the least in the case of treatment from NGOs, it has been the highest for treatment from private doctors/clinics. As already seen in Table 7.10, none of the respondents have sought treatment from faith healers/religious persons and hence there is no expenditure shown against it. The expenditure in instances where home remedies have been used is also very small. In the case of the rural sample, the average cost per illness turns out to be much less for women than for men in private health facilities, and in the urban sample, the same thing is noticed with respect to government facilities. In the rural sample where treatment is taken from government facilities and in the urban sample where it is taken from private facilities, it is seen that there is very little difference in the cost per illness episode for men and women in fact, it is slightly higher for women. In total, however, it is noticed that there is a gender difference in the average expenditure incurred per illness episode irrespective of the source of treatment with cost per treatment being less for female PLWHA than for male PLWHA. 7.3 Details about hospitalisation cases Frequency of hospitalisation reported by PLWHA All the 478 sample PLWHA were asked details of how frequently they were hospitalised after testing HIV-positive and the number of times of hospitalisation during the year prior to the date of interview. These details are presented in Table The percentage reporting hospitalisation since they were tested HIV-positive and the percentage reporting hospitalisation in the last one year is nearly the same for the both female and male samples of the PLWHA. A few important observations are worth mentioning. First, the percentage reporting hospitalisation is much higher for men as compared to women. While more than 65 percent men were hospitalised, both during the time since detection and during the reference one year period; in the case of women this percentage was much lower at 37 percent. Secondly, the percentage of PLWHA who were hospitalised as well as the average number of times they were hospitalised has increased with the advance in the stage of infection. Thirdly, no instance 98 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

119 Table 7.12 Frequency of hospitalisation reported by PLWHA by stage of HIV infection and number of years back HIV was detected Percent reporting hospitalisation Hospitalisation since detected HIV-positive Average number of times Frequently hospitalised (%) Percent reporting hospitalisation Number of times hospitalised in the last one year Average number of times (in Percentages) Frequently hospitalised (%) By sex Male Female By stage of infection Stage Stage Stage Stage By no. of years back HIV status detected Upto 1 year years > 5 years All of frequent/continuous hospitalisation has been reported during the one year reference period. However, while 1.7 percent of men have reported frequent hospitalisation since the detection of their HIV-positive status, these have been reported in stages three and four of the infection. Finally, this table once again, reiterates the point that the number of years since testing HIV-positive may not be indicative of the stage of infection. There is no trend in the percentage hospitalised according to the number of years since testing positive Nature of illness (Hospitalisation cases) As in the case of non-hospitalised illness episodes, in the case of hospitalisation also, fever (20%), loose motion/diarrhoea (34%) and tuberculosis (11.5%) emerge as the common health problems suffered by PLWHA as can be seen from Table While calculating the average number of days hospitalised, cases in which the PLWHA were in the hospital at the time of interview have been excluded. The average number of days of being admitted in a hospital at one time is nearly ten days for men and 13 days for women and 11 days on the whole. Among the common diseases, an average of around 11.5 days has been reported for respiratory infections, headache, body ache, jaundice and tuberculosis Source of treatment (Hospitalisation) The percentage distribution of the hospitalised cases according to the source of treatment indicates that while nearly 59 percent seek treatment Impact of HIV and AIDS on the Health 99

120 Table 7.13 Distribution of hospitalisation cases by nature of illness suffered by HIV-positive men and women and number of days hospitalised (in Percentages) Nature of illness Male Female All Avg. no. of days hospitalised Male Female All 1 Respiratory infection Malaria Fever Headache, bodyache etc Weakness Typhoid Jaundice Sexually transmitted diseases Loose motion/diarrhoea TB Skin diseases Gynaecological/reproductive problems 13 Meningitis and viral encephalitis Others All Illness from government hospitals, about 26.5 percent seek treatment from private nursing homes and the rest (nearly 14%) from NGOs and charitable trusts. The percentages are somewhat similar to those in non-hospitalised illness episodes although the percentage seeking treatment from government hospitals and NGOs has increased by around 5 percent each, and that from private hospitals has decreased by around 9 percent in comparison with non-hospitalised illness. Generally for hospitalisation, people, especially poor/low-income households prefer government health facilities since hospitalisation could be prohibitively expensive in a private nursing home. Table 7.14 Distribution of hospitalisation cases by source of treatment for PLWHA by rural/urban break-up (in Percentages) Source of treatment Rural Urban Total Male Female Male Female Male Female 1. Government hospital Private nursing home Charitable trust/ngo Faith healer/religious person Total Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

121 It is seen that both in rural and urban areas, more women than men take treatment in government hospitals. While in the rural areas, a similar percentage of men and women take treatment from private hospitals, in urban areas more men take treatment from private hospitals than women. In totality, it is seen that while 30 percent men take treatment in private hospitals, the figure is only 20 percent in the case of women. Table 7.15 below gives the distribution of hospitalisation cases with reference to annual household income groups. Once again, it is seen that as in the case of non-hospitalised illnesses, the percentage of PLWHA seeking treatment in private hospitals generally increases with increased income. In the lowest income group, while 60 percent of the cases have been treated in government hospitals and 21 percent through NGOs, only 18 percent have received treatment from private hospitals. However, at the highest income level, 83 percent of the cases have received treatment in private health facilities with only the remaining 17 percent going to government hospitals Household expenditure on hospitalisation The direct cost of hospitalisation includes amount paid as room rent, doctor s fee and cost of medicine, clinical test, surgery and transport. In addition, there could be expenses like a special diet Source of treatment Table 7.15 Distribution of hospitalisation cases by source of treatment and by annual household income groups Upto Annual household income (Rs) (in Percentages) Above Government Private Charitable trust/ngo Faith healer/religious person Total All Table 7.16 Average expenditure incurred per hospitalisation case by PLWHA by source of treatment (in Rupees) Source of treatment Male Female All 1. Government Private 3,996 4,544 4, Charitable trust/ngo Faith healer/religious person Others Total 1,674 1,477 1,616 Impact of HIV and AIDS on the Health 101

122 Irrespective of the income level, all the households had borrowed to meet the hospitalisation expenses for the patients and lodging, food and travel costs for the caregivers. At times, the households may have to pay tips/ bribes to the hospital staff to get better care and attention. Table 7.16 shows the average amount spent by the household per hospitalisation case according to the source of treatment. T h e a v e r a g e e x p e n d i t u r e p e r hospitalisation is Rs. 1,674 for men, Rs. 1,477 for women and Rs. 1,616 on the whole. While the expenditure per episode is higher for men in the case of government facilities and NGOs, it is higher for women in private health facilities. The average expenditure per hospitalisation is the highest for private hospitals/nursing homes and the lowest for treatment from NGOs/charitable trusts. Although the expenditure per episode in government hospitals is only Rs. 796, it could still be a big burden on the households which belong to the lowest economic strata. The difference in expenditure per episode between hospitalisation in private and government hospitals clearly indicates why a higher percentage of PLWHA go to government hospitals for treatment. T h e e x p e n d i t u r e i n c u r r e d p e r hospitalisation case analysed on the basis of the annual household income shows that generally the average expenditure per hospitalisation case increases with an increased annual income. Analysed source-wise, it has shown extremely surprising results. It is seen that as the income increases, the expenditure on government hospitals also increases. This is not the case when the hospitalisation is either in a private hospital or a charitable trust. The average expenditure in the lowest income group considering all sources is Rs. 1,055, and is Rs. 517 for government hospitals. The survey also tried to find out how the HIV affected households bear the burden of illness and expenditure Source of financing hospitalisation Tables 7.18 and 7.19 examine the sources of financing of hospitalisation cases based on annual household income ( Table 7.18) and stage of infection (Table 7.19). On the whole, the households could manage the expenses with their past Table 7.17 Expenditure incurred per hospitalisation case by PLWHA by source of treatment and annual household income groups (in Rupees) Source of treatment Annual household income (Rs.) Upto 20,000 20,001-30,000 30,001-41,000 41,001-84,000 Above 84,000 Total 1 Government (codes1&2)* Private (codes3) 3,998 2,881 4,870 4,122 5,882 4,119 3 Charitable trust/ngo (codes5) Faith healer/religious person (codes 7) Others Total 1,055 1,365 1,605 2,160 5,258 1, Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

123 Table 7.18 Distribution of hospitalisation cases by source of financing hospitalisation and annual household income groups (in Percentages) Source of financing Annual household income Upto 20,000 20,001-30,000 30,001-41,000 41,001-84,000 Above 84,000 Total Past savings Liquidation of assets Borrow from money lender/ other financial institution Loan from employer Borrow from friends and relatives NGO support Others Total Table 7.19 Distribution of hospitalisation cases by source of financing hospitalisation and stage of infection (in Percentages) Source of financing Stage 1 Stage 2 Stage 3 Stage 4 All Past savings Liquidation of assets Borrow from money lender/ other financial institution Loan from employer Borrow from friends and relatives NGO support Others Total savings only for 18 percent of the hospitalisation cases. Except the highest income households, all the others had resorted to liquidation of assets to finance hospitalisation. Irrespective of the income level, all the households had borrowed to meet the hospitalisation expenses. Although the source of financing hospitalisation with reference to the stage of infection does not show any clear trend, except that at stage 4, the households seem to rely on all the sources to finance the hospitalisation expenses. The dependence on NGOs also increases with the increase in the stage of infection Impact of HIV and AIDS on the Health 103

124 7.4 Observations The prevalence rates of both nonhospitalised and hospitalised illnesses are higher for HIV households as compared to non-hiv households, indicating a heavy burden of diseases on HIV households. A good number of the sample PLWHA had gone in for the HIV test after suffering from prolonged illness like undiagnosed fever, tuberculosis or diarrhoea. The burden of diseases generally increases with the advance of stage of infection and the PLWHA have to spend a lot of money even when they undergo treatment from government hospitals. In order to meet this burden, they not only have to dip into their savings but also have to borrow money. In the worst-case scenario, they have to resort to liquidation of assets. In fact, except for households in the highest income group, all the rest have resorted to it. 104 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

125 Stigma and Discrimination, Knowledge and Awareness about HIV and AIDS

126 106 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

127 Chapter 8 Stigma and Discrimination, Knowledge and Awareness about HIV and AIDS 8.1 Introduction HIV is an infection that preys on social, economic and community vulnerabilities. From the beginning, the infection has been accompanied by social responses of widespread stigma and discrimination. Because of its association with lifestyle choices that are considered socially unacceptable by many, HIV infection is widely stigmatised. People living with the virus are discriminated against. Equally responsible for this attitude is the lack of proper knowledge among people about the infection and the many misconceptions that exist around it. Stigmatisation and discrimination not only affect the rights of the people living with this condition, it discourages them from disclosing their status, in many cases, even to their spouses and hence contributes to others getting infected. This chapter analyses the stigma and discrimination faced by the sample PLWHA in four different settings in the state of Tamil Nadu, namely their family, the community in which they live, their workplace and the healthcare facilities where they seek treatment. This chapter also includes the views and attitude of the general population about HIV and AIDS, since stigma and discrimination against PLWHA arise mostly due to lack of knowledge and awareness and misconceptions about the infection. Before discussing the stigma and discrimination faced by PLWHA, details about the ways in which the sample PLWHA discovered their HIV status and the disclosure of their status to their family members and others are presented. 8.2 Discovering HIV status An HIV infected person would not know his/her HIV status unless he/she goes in for a blood test after a prolonged illness or at the time of donating blood or during pregnancy. Health counsellors also recommend the spouses of those who test HIV-positive to go in for voluntary testing. Table 8.1 shows that while nearly 64 percent of the men who had tested HIV-positive had gone in for a test after prolonged illness, only 24 percent of women had gone in for testing after prolonged illness. A number of women, as high as 64 percent, had gone in for voluntary testing and a large percentage of such women had done so after discovering the HIV status of their husbands. Around 9 percent of the women discovered their HIV status during pregnancy and a few men also discovered their status when their wives tested positive during pregnancy. Stigma and Discrimination 107

128 Table 8.1 Distribution of PLWHA by ways of discovering their HIV status (in Percentages) Characteristics Rural Urban Total Male Female Male Female Male Female Discovering HIV status Voluntary testing After prolong illness During pregnancy-spouse/self Blood test at the time of joining a job Others No. of years back HIV was detected Less than a year years years Place of testing Government hospital Private hospital/clinic Mode of infection Sexual contact (heterosexual) Sexual contact (homosexual) Blood transfusion/donation Needle sharing Others N (Number of persons) The sample consists mostly of those who had tested positive in the last three years; they account for around three-fourths of the sample PLWHA. Most of them had gone to government hospitals for the HIV test. About 56 percent of the men and 66 percent of the women had got the test done in government hospitals, and the remaining 44 percent men and 34 percent women had it done from private hospitals/clinics. In India, the main route of HIV transmission is through sexual contact and this route accounts for approximately 86 percent of the HIV infections in the country. The remaining 14 percent are by other routes such as blood transfusion, parent-tochild-transmission and through injecting drugs, particularly in north eastern states and in some metropolitan cities (NACO, 2005). The present sample also shows that the main mode of transmission of HIV infection is through sexual contact, that too heterosexual contact. For as many as 90 percent of women and 86 percent of men, the mode of transmission of HIV is reported to be through heterosexual contact. 108 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

129 8.3 Reaction to HIV status Initial reaction The survey tried to find out how the affected/infected persons and their family members reacted as soon as the HIV status was discovered and Table 8.2 presents these findings. As expected, in more than 65 percent of the cases, the initial reaction had been one of shock. Many of them could not believe it and there were those who felt embarrassed. A few of them did not want to face their family members and a small percentage decided to stay away from their family and spouse. Around Table 8.2 Distribution of sample PLWHA by reaction to their HIV status (in Percentages) Characteristics Rural Urban Total Male Female Male Female Male Female Initial reaction (self)* Shocked Embarrassed Could not believe Didn t want to face the family Decided to stay away from the family & spouse Decided to keep HIV status secret Others Initial Reaction of spouse/family members* Shocked Denied/disappointed Empathised Embarrassed Supportive Disowned by the family Spouse deserted Not informed anybody Others Current attitude of spouse/family members* Neglected, isolated, verbally/ physically teased All are supportive Family is not but spouse is supportive Initial hesitation, but then supportive Others (deprived of using basic amenities at home, asked to leave home) Total number *Multiple Responses Stigma and Discrimination 109

130 In cases where the family is not supportive but the spouse is, it is noticed that more women are supportive of their HIV-positive husbands (14.5%) than men of their HIV-positive wives 13 percent had initially decided to keep their HIV status as a secret on account of perceived discrimination or rejection. As far as the initial reaction of the spouse/family members is concerned, it is seen that quite a large percentage were shocked and disappointed. However, in about 43 percent of the cases they were supportive and here no gender divide is noticed. Surprisingly, in a larger percentage of cases the family/spouse sympathised with the female PLWHA (21.5%) rather than the male PLWHA (9.3%). Again, surprisingly, in 4.1 percent cases male PLWHA were deserted by their spouses while in the case of female PLWHA this figure was lower at 2.9 percent. However, 7.7 percent of female PLWHA were disowned by their family in comparison with 1.5 percent male PLWHA who were subjected to this treatment Current attitude of spouse/family members The current attitude of the family members is quite encouraging, as 80 percent of the male and 74 percent of the female PLWHA have reported that their families are quite supportive in spite of there being a slight hesitation for a few in the beginning. This speaks for the strong family ties in India. However, here again, there is a gender gap in the percentage receiving support from the family, although there is no rural/urban divide. Also, in cases where the family is not supportive but the spouse is, it is noticed that more women are supportive of their HIV-positive husbands (14.5%) than men of their HIV-positive wives (8.1%). Again, the percentage reporting problems like deprived of using basic amenities and being asked to leave the home etc, is more in the case of women than for men and this gender difference is more marked in urban areas. For both men and women, the contexts and forms of HIV and AIDS related discrimination and stigmatisation would appear to be similar but it is the context of relationship that sets apart the experience of women from that of men. Discrimination like neglect, isolation, verbal teasing was reported by a higher percentage of women in both urban and rural areas. In the FGD that was conducted at Cambam in the Theni district, there were participants who had been treated well by their families as well as those who had faced discrimination. One of the participants informed the group that his mother, brothers and sisters were taking extra care of him since they felt that he was not going to live for long. However, in case of a woman participant her brother s family supported her after she became a widow but they asked her to keep her bed and vessels separately and were always scared of catching the infection from her to the extent that they would not even allow her to kiss her daughter who was HIV-negative. The majority of the participants in the FGD did not complain of discrimination within the family Coping with the situation As seen earlier, when their HIV-positive status was detected, most of the people were initially shocked, embarrassed or could not believe it. The survey tried to find out from the PLWHA how they managed to cope with the situation and how they got over the initial shock. Table 9.3 presents the percentage distribution of the PLWHA with reference to various types of coping mechanisms adopted by them and the nature of moral support received by them from various people. Around 48 percent of the HIV-positive men and 44 percent of the women reported that the counselling received 110 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

131 from counsellors helped them to come to terms with the situation. Table 8.3 Distribution of PLWHA by coping mechanism adopted to get over initial shock/disbelief etc (in Percentages) Characteristics Male Female Counselling Confidently Family support Friend support Became alcoholic Decided to keep HIV status secret Help others NGO support Wanted to know how to live with HIV status Total A higher percentage of women (6.2%) as compared to men (3.7%) decided to face the situation boldly. Some of them did receive moral and emotional support from their family and friends and also from NGOs. It is interesting to note that after testing positive, nearly 35 percent of the respondents wanted to know more about the infection and the ways and means of leading a quality life in spite of their HIV status. 8.4 Disclosure of HIV status Whether an individual who is infected by HIV would disclose his/her status to others would depend upon the kind of reaction that the individual expects from them. As seen in the table, around 13 percent of the PLWHA s initial reaction, i.e. as soon as they were tested positive, was not to disclose their status to anyone. It is seen from Table 8.4 that while 88 percent of women in the sample informed their spouses immediately, the percentage of men who did the same is lower at 69.3 percent. But of those who have not informed their spouses even after one year, the percentage sample of women is slightly higher at 5.2 percent as against 3.5 percent for the men. This could probably be because if the woman is HIV-positive without her husband being the same, her perception would probably be that her husband/family would not support her or keep her. Hence, this refusal to make Table 8.4 Distribution of PLWHA by disclosure of status (in Percentages) Characteristics Rural Urban Total Male Female Male Female Male Female Percentage who initially decided to keep HIV status a secret Percentage who informed their spouse Immediately Within six months Within one year After one year Not informed their spouse Not disclosed to anyone in the community N (Number of persons) *Multiple Responses Stigma and Discrimination 111

132 Around 20 percent of the households had changed their place of residence after one of their household members was detected HIVpositive a disclosure could be for the security of her future life. The fact that so many of the respondents informed their spouses immediately after the diagnosis is an encouraging sign since this would reduce the chances of their transmitting the infection to their spouses. A high percentage of the sample, nearly 71 percent of men and 56 percent of women have not disclosed their HIV-positive status in the community, fearing, in all probability, the stigma and discrimination they will fall victim to. 8.5 Migration The survey tried to find out whether the households changed their place of residence after one of their household members was detected HIV-positive. It is clear from Table 8.5 that around 20 percent of the households had changed their place of residence. Of the total number of households that had changed the place of residence, more than 40 percent of them had shifted within the same village/city. It is interesting to observe that the percentage of households moving from rural to urban and urban to rural is similar. Inter-state migration has been very marginal. Nearly 12 percent of the households had to change their place of residence since they were asked to vacate the house by the owner because of the HIV status of one of the family members, and around 15 percent shifted their residence, as they did not want their status to be known to others. While 12 percent have changed their residence because they could no longer afford the earlier one, 3.7 percent had to move away as they had lost property, indicating the financial burden the illness and its treatment brings on the household. About 10 percent had Table 8.5 Distribution of PLWHA reporting change of residence and reasons to migrate in order to seek medical treatment. 8.6 Stigma and discrimination faced by PLWHA (in Percentages) Characteristics Percentage of household 19.8 reporting changing of residence after deducting HIV Type of movement Within the same city/village 42 From city to village 8.6 From village to city 11.1 From one city to another city 22.2 From one village to another 14.8 village One state to another state 1.2 Reasons for changing the residence* Search of employment 18.5 Could not afford earlier place of 12.3 residence To seek medical treatment 9.9 Loss property 3.7 Reasons of anonymity 14.8 Asked to vacate the house 12.3 because of HIV status Others 28.4 *Multiple Responses Stigma and discrimination faced by the PLWHA at different settings, namely family, community, workplace and the healthcare facilities are presented in this section Discrimination in family & community In most developing countries, the families and communities generally 112 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

133 provide supportive environment for illness management and treatment (Bharat, 1996). However, the same study found that although majority of those who disclosed their HIV status to their families received care and support, it was generally men rather than women who qualified for such care. Gender seems to be a strong determinant of the type of response one receives from the family: daughters, wives and daughters-in-law experience higher levels of discrimination than men (Bharat et al 2001). The community s perception about the epidemic also influences the family s responses to the infected individual. If the family expects isolation and ostracism from the community, then the family may not include the HIV-positive individual in the family. Table 8.6 presents stigma and discrimination faced by PLWHA in the community and neighbourhood. It is seen in Table 8.4 that many of the PLWHA have not disclosed their status in the community. Of those who have disclosed their status, about 10 percent have reported discrimination in the form of neglect, abuse, social boycott of family and children. Other studies also give the evidence of reactions like ostracism, differential treatment at death, and discrimination in schools towards children of infected parents (Bharat et al 2001; ILO 2003). The presence of an HIV-positive individual does seem to affect the marriage and job prospects of other family members to some extent. Here again, there is a difference in the attitude of society towards men and women. While only 0.4 percent of HIV-positive men reported that their HIV status was affecting the marriage prospects of their siblings, 2.4 percent of positive women reported this problem. Similarly, a small percentage of PLWHA complained that their HIV status was Table 8.6 Stigma and discrimination faced by PLWHA in the community/ neighbourhood by sex Characteristics Percentage reporting that they are treated differently or badly Type of discrimination faced by those reporting stigma/discrimination* Total Male Female Neglected, isolated Verbally abused, teased Children not allowed to play with other children/ anganwadi centre Socially boycotted or debarred from public amenities Refused house for renting Others Percentage of PLWHA whose siblings marriage prospect was affected Percentage of PLWHA whose family members job prospects was affected *Multiple Responses affecting the job prospects of other family members and this percentage reporting discrimination is surprisingly higher for women Discrimination at workplace Every person has a right to gainful employment and the right to earn a living. However, for a number of HIV infected persons, getting gainful employment could become a problem due to stigma and discrimination against such persons. In a workplace, stigma and discrimination against PLWHA can manifest itself through discriminatory Stigma and Discrimination 113

134 hiring and promotion practices and work allocation, establishment of unfair benefit packages and negative attitude of employers, co-workers and managers. In the present study, details about the type of discrimination faced by the PLWHA in the workplace, attitude of employers and their colleagues were gathered from those who were currently employed. Table 8.7 Distribution of the PLWHA according to their work status Characteristics Number Percent Currently working Never employed Stopped working at the time of survey Total Table 8.8 Distribution of PLWHA by disclosure of status and discrimination faced at workplace Characteristics Percentage of PLWHA who changed the job after testing HIV-positive Percentage of PLWHA who disclosed their HIV status to the employer Percentage of PLWHA who faced discrimination Percentage of PLWHA receiving support from employer About 12 percent of the respondents were never employed. The workplace, which is considered to be the second home and where an individual spends his maximum time, is a microcosm of the whole community, which mirrors societal attitudes. (in Percentages) HIV household Rural Urban Total The PLWHA who were currently employed were asked whether they changed their job after they were tested positive. As seen in Table 8.8, only about 12 percent had changed jobs and this percentage is more or less the same for urbanites as well as rural folk. Only 23 percent of the PLWHA who are currently employed have disclosed their HIV status to their employers and the main reason for not disclosing their HIV status is the fear of losing the job. It may be surprising to know that only a small percentage of those who have disclosed their HIV status have reported that they have faced discrimination and in fact many of them, especially in the urban areas, have reported that they are receiving support from their employers. This could be due to the fact that a number of them are working in a protective environment with NGOs and institutes which are in the field of HIV and AIDS. These employees are receiving support in the form of reimbursement of medical expenditure and paid leave. In the FGD, many of the participants informed that they had not disclosed their HIV-positive status to their employers fearing discrimination. However, some women working as labourers mentioned that neither those who were working with them nor their employers treat them badly or differently although they are unable to attend to work on many days due to ill health Discrimination at health facilities The healthcare setting has emerged as the most frequently encountered place of discrimination, followed by familial and community contexts. The various forms of discrimination in a health facility include refusal of treatment, discriminatory precautions and lack of confidentiality. Doctors often refuse to aid in the delivery of a positive pregnant woman, despite 114 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

135 minimal risk of contracting the infection (ILO 2003). The discrimination can also appear in the form of refusal to touch a patient, levying additional charges, and agreeing to treat only if the mode of infection was not sexual. In a study conducted in Mumbai and Bangalore, many healthcare providers and facilities were found to deny care, treat patients poorly, and stipulate conditions for agreeing to treat HIV patients (Bharat et al 2001). Table 8.9 presents percentage distribution of PLWHA reporting discrimination at health facilities in Tamil Nadu. About 17 percent of male and 11 percent of female PLWHA in Tamil Nadu reported that they had faced discrimination at healthcare facilities although there is no urban/rural divide. Among those reporting discrimination at health Table 8.9 Distribution of PLWHA reporting discrimination at health facilities (in Percentages) Characteristics Rural Urban Total Male Female Male Female Male Female PLWHA reporting discrimination at health facilities Place of discrimination PHC/CHC Government hospital Private doctor/hospital Type of discrimination* 1 Neglected, isolated Verbally or physical abused, teased Refused medical treatment Referred to another health facility Refused access to basic facilities Unnecessary use of protective gear Others** Attitude of other patients 1 Neglected, isolated Verbally or physically abused, teased Refused to seek treatment with HIV Restrictions on movement in ground Status not known to others Not discriminated Others (refused to seek treatment along with PLWHA) Reporting denial of admission at health facility *Multiple Responses **Others include refused access to facilities like toilets and common eating and drinking utensils, non admission, shunting between wards/hospitals, doctor did not touch/gave wrong information Stigma and Discrimination 115

136 Discrimination forces people to hide their status and may well lead to further spread of infection but the fact that it is happening at the hands of doctors and other health officials is very discouraging facilities, more than three-fourths have had bad experiences at government healthcare facilities. This was confirmed by the participants of the FGD. The general view was that although there is a government hospital (maybe a PHC) near Kandamkoil, the personnel were afraid of treating these PLWHA. A lady participant mentioned that although her husband was vomiting continuously and was taken to the hospital, he was refused treatment and had to be taken to the district hospital at night. Another young woman, presently a widow, narrated her experience during her child s birth in She and her husband had been diagnosed as HIV-positive when she was five months pregnant. When the doctor at the nursing home came to know of this, he refused to take up her case. As a result, she went to a government hospital for delivery but because of her previous bitter experience did not disclose her status. A similar incident was recounted by another woman where her fatherin-law s status was not disclosed while seeking treatment for his heart attack as they feared that treatment would have been refused if his HIV-positive status was known. Discrimination forces people to hide their status and may well lead to further spread of infection but the fact that it is happening at the hands of doctors and other health officials is very discouraging. The fact that only 22 percent of men and 17 percent of women among those reporting discrimination, had mentioned that they were discriminated against at private health facilities, may give an impression that there is less discrimination in the private set up. But it has already been seen in the chapter on profile that the economic background of the PLWHA is very bad. Hence one can reasonably assume that only a small proportion of the PLWHA are likely to go to private health facilities. Of those PLWHA who had reported discrimination, about 37 percent were either refused medical treatment or were referred to another health facility; nearly 40 percent felt that they were neglected and isolated or abused at the health facilities and about 4 percent complained that they were denied admission in a hospital. It is heartening to note that 38 percent of men and 35 percent of women did not face any discriminatory or hostile behaviour from other patients who were being treated along with them. However, in some cases their HIV status was not known to other patients, hence the question of discriminatory treatment does not arise. About 25 percent of PLWHA complained that they were isolated and neglected by other patients. In some of the cases, HIV-negative patients refused to get treatment along with PLWHA. 8.7 Knowledge and awareness about HIV and AIDS and attitude towards PLWHA Stigma, negative responses and attitude towards PLWHA are generally the result of lack of knowledge about HIV and AIDS and in particular about the routes of transmission. Hence in this study, through a survey of non-hiv households, an attempt was made to find out about the general level of knowledge and awareness about HIV and AIDS. Both men and women in the age group of 20 to 60 years were asked a series of questions to judge their knowledge about the infection, and also to know their attitude towards PLWHA. In all, 1,203 persons 559 men and 643 women were interviewed in 116 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

137 Table 8.10 Distribution of respondents according to their knowledge and awareness about HIV and AIDS (in Percentages) Characteristics Rural Urban Total Male Female Male Female Male Female People reporting ever heard about HIV and AIDS Source of information* Radio TV Cinema hall Newspapers/books/magazines Posters/hoarding/drama/puppet show School/workplace Doctor/health workers Relatives/friends Others People who think HIV and AIDS can be prevented People who know where to go for voluntary testing for HIV and AIDS People willing to go for testing for HIV and AIDS People who know someone suffering from HIV and AIDS People who know anyone who died of AIDS *Multiple Responses Tamil Nadu. The results of this survey show interesting facts. Almost everyone in the sample seems to have heard about HIV and AIDS and the media, especially, radio and television seem to have played a role in creating this awareness. While about 38 percent have come to know about the infection through various television channels, around 30 percent have become aware of it through programmes or announcements on the radio. This is not surprising considering that a very high proportion of sample men and women are in the habit of watching television and listening to the radio quite regularly (Table 8.11). Interestingly, for about 8 percent men and 11 percent women, the source of information has turned out to be friends/relatives. Although everyone has heard about HIV and AIDS, not all of the respondents seem to have knowledge about other details like whether HIV and AIDS transmission could be prevented and where to go for voluntary testing etc. Only about 50 percent of the women and 70 percent of the men knew that HIV and AIDS could be prevented, less than one-third of the women and 50 percent of men knew where to go for voluntary testing. Men appear to be more knowledgeable about information related to HIV and AIDS. Stigma and Discrimination 117

138 Table 8.11 Distribution of respondents by exposure to media (in Percentages) Characteristics Rural Urban Total Male Female Male Female Male Female Listen to radio Daily/weekly Occasionally/monthly Never Watch TV Daily/weekly Occasionally/monthly Never Go to cinema Weekly/daily Monthly Occasionally Never Read newspaper/magazines Daily Weekly/monthly Occasionally Never Total Knowledge about modes of transmission Table 8.12 presents percentage distribution of respondents according to their knowledge about the various modes of transmission. More than 50 percent of women and about 75 percent of men could mention all the right modes of transmission of HIV, which includes sexual contact, sharing a needle with an infected person, transfusion of infected blood and transmission from mother to child. It a p p e a r s t h a t m e n a re m o re knowledgeable than women regarding the right modes of transmission of the virus. There is, however, no urban/rural divide. However, the percentage of respondents not knowing even a single mode of transmission is almost negligible. Although a fairly high percentage of respondents knew the various modes of transmission, many of them also had misconceptions about the modes of transmission. Such myths and misconceptions accentuate the stigma and discrimination against HIV infected persons. Many of them seem to have a misconception that sharing shaving kits and razors (40%) as also mosquito bites (27%) could spread AIDS. A few of believe that hugging and kissing a PLWHA or sharing food and utensils and touching or shaking hands with PLWHA could infect them as well. 118 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

139 Table 8.12 Distribution of respondents according to their knowledge about mode of transmission of HIV and AIDS (in Percentages) Characteristics Rural Urban Total Male Female Male Female Male Female Reporting right mode of transmission All modes Some modes Not at all Others People who had misconception that HIV and AIDS can spread through Hugging/kissing AIDS Sharing food/utensils Mosquito bite Touching/shaking hands Sharing toilet Sharing shaving kits/razors Who have heard of any other disease transmitted through sexual contact Who know that a person suffering from STI has greater chance of getting HIV and AIDS As compared to women, men seem to know more about sexually transmitted infections. While more than 50 percent of the male respondents knew about STI, only 40 percent of women seem to have knowledge about this infection. A similar percentage of men and of women knew that a person suffering from STI has greater chances of getting HIV and AIDS. The knowledge about STI seems to be more among urban men and rural women as compared to rural men and urban women. Knowledge and awareness about condom assumes significance in the context of avoiding the spread of HIV infection. Unprotected sex with multiple partners and non-regular partners is an important mode of HIV transmission. In the present study, an equal percentage of men and women (49%) reported being aware of the uses of condoms in preventing pregnancy. While a higher percentage of men were aware that it could be used for HIV and AIDS prevention, a higher percentage of women knew that it could be used for prevention of STIs. However, on the whole, the level of knowledge seems very low. The percentage of people who reported the use of condoms was low. This knowledge regarding usage of condom for preventing transmission of HIV and AIDS is higher among the rural population as compared to urban population. In spite of various efforts being taken to promote the use of condoms, only a small percentage i.e. one-third of men and nearly one-fourth of women seem to know that condoms can be used to prevent HIV and AIDS. Stigma and Discrimination 119

140 Table 8.13 Distribution of respondents according to their knowledge about usage of condom (in Percentages) Characteristics Rural Urban Total People reporting right usage of condom Male Female Male Female Male Female Avoiding preg/fp method STI prevention HIV and AIDS prevention Others Percentage of people reporting using condom Attitude of people towards PLWHA Stigma and discrimination contribute to the socio-economic vulnerability of PLWHA. Existing misconceptions regarding the spread of the infection have led to high-prevalence of discrimination and negative responses and attitudes of people towards PLWHA. Table 8.14 presents the percentage distribution of respondents according to their attitude towards PLWHA. The table clearly shows that people do have a negative attitude towards PLWHA and as compared to men, women are more prejudiced and have more of a negative attitude towards such persons. People are generally more hesitant to share food with PLWHA and even to allow their children Table 8.14 Distribution of respondents according to their attitude towards PLWHA (in Percentages) Characteristics Rural Urban Total Reporting that they would Male Female Male Female Male Female Interact with the family having HIV patients Share food with the PLWHA Avail the health facility used by the PLWHA Allow their children to play with the children from a family having a PLWHA Send their children to a school where HIV-positive children study Purchase fruits vegetables etc from a shop keeper who is HIV-positive Accept a PLWHA as a teacher Their community would allow PLWHA to live in the same community N (Number of respondents) Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

141 to mingle with children belonging to HIV households. These negative responses arise mainly due to misconceptions about the modes of transmission of HIV. Thus, creating greater awareness among people would go a long way in accepting the PLWHA in the family and society at large. 8.8 Observations 1. For a person suffering from HIV, treatment of any opportunistic illness becomes very important. Steps should be taken to see that such people get access to treatment from both government and private health facilities. In fact, their right to treatment should be ensured, or else their status may be withheld, increasing the chances of spreading the infection. 2. Efforts should be made to create greater awareness about HIV and AIDS, especially about the modes of transmission of the infection. 3. Campaigns to change the attitude of the people towards PLWHA are highly recommended. 4. Popular television channels and radio stations could be utilised for creating greater awareness as well as for changing the attitude of the people, since radio and television seem to be effective means of mass communication. 5. Pre and post-test counselling for HIV and AIDS should be emphasised. 6. Proper awareness and information about the infection and a change in the attitude of the people towards those suffering from it could go a long way in curtailing the spread of this infection. The negative responses arise mainly due to misconceptions about the modes of transmission of HIV Stigma and Discrimination 121

142 122 Socio-Economic Impact of HIV and AIDS in Tamil Nadu, India

143 Conclusion and Policy Implications

144 124 Socio-Economic Impart of HIV and AIDS in Tamil Nadu, India

145 Chapter 9 Conclusion and Policy Implications The results of the study in Tamil Nadu indicate that although the impact of the epidemic is mainly on the working members of the household, the entire household gets affected economically, physically, emotionally and to some extent socially. The education of the children in these families is also being affected. The percentage of widows in the sample is much higher than that of widowers. Also, while 64 percent of the men discovered their HIV status after prolonged illness, the same percentage of women discovered their status after voluntary testing, and that too mostly after their husbands had tested positive. One may infer from this that in the household set up, there is a possibility that in a higher percentage of the cases, the infection is being transmitted from men to women. Also, as seen from the profile, many of the PLWHA have been forced to withdraw from the labour force due to ill health. C o m p a r i s o n o f t h e w o r k f o rc e participation rates of HIV and non-hiv households shows that the infection has indeed put an additional burden of earning on the children and more so on the elderly in the household. This is in spite of the fact that work force participation in the sample is higher for PLWHA. It would be another matter to assess what would be the impact when the presently working PLWHA are unable to continue working. Not only has the infection forced a few PLWHA to change their occupation after being detected HIV-positive, but some have even had to give up their jobs. Most of the PLWHA who had to give up work had to do this due to ill health. The HIV households were seen to suffer income loss in three ways: (a) Currently working PLWHA forced to take leave or be absent from work due to ill health, (b) PLWHA dropping out of work force with worsening physical condition, and (c) An employed caregiver in the family had to take leave to look after the PLWHA. Although the aggregate economic impact did not appear to be much at the macro level, it was serious, particularly in households where the number of PLWHA was more than one or where the family suffered loss in more than one of the above mentioned ways. There was also no mechanism in place to support those who lost their jobs and the issue is more serious in the case of wage earners who lack social security. While the annual per capita income of HIV households in the sample is lesser than that of the non-hiv households, their per capita expenditure is higher, mainly because of higher levels of Conclusion and Policy Implications 125

146 The income of HIV households needs to be supplemented either by finding employment for some unemployed person of the household or depending on the situation, by finding suitable employment for the affected PLWHA expenditure on medical care (more than double) and house rent. To cope with this additional burden, these households are undercutting expenditure on other items including food essentials for their continued good health and education of the children which may later have repercussions on the household income. Also, the HIV households are seen resorting to borrowings and liquidation of assets which is affecting their savings adversely. The movement away from fixed assets to relatively liquid assets, observed in sample HIV households indicates loss of wealth and also capacity to deal with exogenous shocks in the future. The long-term consequences of HIV and AIDS on total and household savings can be disastrous. The impact may not be visible yet in the Indian scene given the fact that the proportion of households affected by HIV is still quite low. The wellto-do among the HIV households seem to be managing quite well even with the burden of additional expenditure/loss of income, while the poor among these households are the worst hit. It appears that HIV and AIDS could increase the incidence as well as severity of poverty. Since the PLWHA can work as long as they are fit, it is essential to see that they have good food and get the required supply of ARV. Health facilities must be made affordable. The income of HIV households needs to be supplemented either by finding employment for some unemployed person of the household or depending on the situation, by finding suitable employment for the affected PLWHA. Education is a must for a person to be independent and lead a reasonably good life. The results of the survey show that one HIV-positive child was refused admission in school in view of his condition. More importantly, the enrolment and continuation of schooling of non-hiv children from HIV households is being affected either because they are forced to take up some job or have to look after the sick. Public in general and school authorities in particular need to be educated about HIV and AIDS. Education of children must be ensured either by giving them financial help or better still by making arrangements for treatment and care of the affected. The results reveal that many of the sample PLWHA had gone in for an HIV test after suffering prolonged illness. The prevalence rates of both nonhospitalised and hospitalised illnesses are much higher in HIV households compared to their non-hiv counterparts; thus indicating a heavy financial burden on them and putting the strain of looking after the affected on the household. The burden is generally seen to increase with increasing stages of infection. The expenditure on illness is the least when treatment is taken from NGOs, higher when taken from government facilities and the highest when they go to private doctors or hospitals, in case of both non-hospitalised and hospitalised illness. Even when treatment is taken from NGOs and government hospitals, they are forced to incur a minimum expenditure, which itself is a huge burden on these households, belonging to a low economic strata of society. At least the poor among the HIV households those below poverty line should be provided free healthcare. The results of the survey show that though a large majority of the PLWHA are informing their spouses immediately after learning of their positive status, there are a few who have kept it a secret from them. This may not only spread the virus to the spouse but also to any children that might be born. They are 126 Socio-Economic Impart of HIV and AIDS in Tamil Nadu, India

147 also reluctant to divulge their status in the community and workplace for fear of discrimination and loss of job, but this stigma can create an environment in which people may avoid HIV-related services. Although most families have been supportive, there are also cases of discrimination by the family itself. Lack of awareness or misconceptions about the infection as well as the negative attitude of people towards PLWHA has led discrimination in the community workplace and even in healthcare facilities. It may be emphasised that women are being discriminated against more in families even though they take care of the sick husband and are also at times forced to take up a job apart from attending to household chores even when they are themselves sick. Their knowledge and awareness levels about the infection are also low, which makes it difficult for them to protect themselves from the infection. Another important point noticed is that while the prevalence rate of illness is generally lower for women, the expenditure per illness episode is also less for women PLWHA, irrespective of the source from which the treatment has been taken. Also, the percentage of untreated illnesses is higher for women, mainly due to lack of money. Responses from non-hiv adults interviewed indicate that women are more prejudiced as compared to men and have more of a negative attitude towards PLWHA. Special efforts need to be made to educate women. It is imperative that people, especially women be made fully aware of the different aspects of the infection, both through education and through the media to bring about a change in the attitude towards PLWHA. Special efforts need to be made to sensitise people working in healthcare facilities. The fear and prejudice that lies at the core of such discrimination needs to be tackled by creating a more enabling environment to assimilate HIV affected people within society. The fact that families have been supportive to a large extent in India reflects the strong family ties that exist in the system. Many of the widows thrown out of their in-law s house have taken shelter with their parents and brothers. Some of the PLWHA who attended the FGD were of the view that their families would take care of their children eventually. This would also be much better for the children than being sent to orphanages. Hence, it is possible that the future witnesses many grandparents not only fending for themselves, but also taking care of their orphaned grandchildren. Hence, it is essential that a support system be in place to help them. The support could be financial, physical or moral depending on the merits of each case. It is imperative that people, especially women be made fully aware of the different aspects of the infection, both through education and through the media to bring about a change in the attitude towards PLWHA Conclusion and Policy Implications 127

148 128 Socio-Economic Impart of HIV and AIDS in Tamil Nadu, India

149 Annexures Conclusion and Policy Implications 129