Introduction. A category: More than 1% ANC/PPTCT prevalence in district in any time in any of the sites in the last 3 years

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3 Table of Contents 1. Introduction Programmes for Children and HIV/AIDS Preventing Infection Among Adolescents and Young People Prevention of Parent to Child Transmission of HIV Providing Pediatric Treatment Protection and care for children affected by HIV/AIDS... 37

4 Acronyms AEP Adolescence Education Programme AIDS Acquired Immuno Deficiency Syndrome ANC Ante Natal Clinic ANM Auxiliary Nurse Midwife ART Antiretroviral Therapy ARV Anti Retro Viral ASHA Accredited Social Health Activities BSS Behavioral Surveillance Survey CBO Community Based Organization CDC Centre for Disease Control CHARCA Coordinated HIV/AIDS Response through Capacity Building and Awareness CHC Community Health Centre CIDA Canadian International Development Agency CIFF Children Investment Fund Foundation CMIS Computerized Management Information System CLHA Children Living with HIV and AIDS CRY Child Relief and You CSW Commercial Sex Worker DBS Dried Blood Spot DWCD Department of Women and Child Development EVA Especially Vulnerable Adolescents FHI Family Health International FOGSI Federation of Obstetrics and Gynaecology, GFATM Global Fund for AIDS, TB & Malaria HIV Human Immuno-deficiency Virus HPS High Prevalence States HRG High Risk Group IAP Indian Academy of Pediatrics ICDS Integrated Child Development Services ICHAP India Canada HIV/AIDS Prevention ICTC Integrated Counseling and Testing Centre IDU Injecting Drug User ILO International Labor Organization IMA Indian Medical Association INGO International Non Governmental Organization INP+ Indian Network of Positive People KAP Knowledge, Attitudes and Practices KSY Kishori Shakti Yojana MARA Most At Risk Adolescents MCH Maternal and Child Health MDG Millennium Development Goals MHRD MOHFW MSJE MSM MTCT MWCD NACO NACP NCERT NFHS NGO NRHM OI PCR PCP PIP PLHA PNC PPTCT RCH SACS SHG STD STI SW TB TI UNAIDS UNDP UNESCO UNFPA UNICEF UNIFEM UNODC UT VCTC WHO YP Ministry of Human Resource Development Ministry of Health and Family Welfare Ministry of Social Justice & Empowerment Men having Sex with Men Mother To Child Transmission Ministry of Women and Child Development National AIDS Control Organization National AIDS Control Programme National Council of Educational Research and Training National Family Health Survey Non-Governmental Organization National Rural Health Mission Opportunistic Infections Polymerase Chain Reaction Pneumocystis Carinii Pneumonia Programme Implementation Plan People Living with HIV/AIDS Post-Natal Care Prevention of Parent to Child Transmission Reproductive & Child Health State AIDS Control Society Self Help Group Sexually Transmitted Disease Sexually Transmitted Infection Sex Worker Tuberculosis Targeted Intervention Joint United Nations Programme on HIV/ AIDS United Nations Development Programme United Nations Educational, Scientific and Cultural Organization United Nations Population Fund United Nations Children s Fund United Nations Development Fund for Women United Nations Office on Drugs and Crime Union Territory Voluntary Counseling & Testing Center World Health Organization Young People

5 Introduction Introduction Children and young people are at the forefront of the HIV/AIDS epidemic today. The most vulnerable group to infections, millions of children face the socio economic and psycho social impact of the epidemic. India has an adult prevalence of 0.36 percent. Translated into numbers it means that approximately 2 to 3.1 million people are estimated to be living with HIV/AIDS today in the country. The Indian epidemic is a patchwork of epidemics, with concentrated, generalized and low prevalence / high vulnerability settings existing within a specific geographic setting. The first case of HIV was detected in Tamil Nadu in Thereafter the epidemic spread to all parts of the country with the highest number of cases in six States, however, in the other States as well, we see pockets of high prevalence, high risk for HIV/AIDS and the potential for spread to other parts of the State and country. Based on antenatal prevalence (ANC), six states in India have been identified as high prevalence states (having more than 1.0 per cent HIV prevalence in general population), Tamil Nadu, Andhra Pradesh, Karnataka, Maharashtra, Manipur and Nagaland. Three states as moderate prevalence states (concentrated epidemic with more than 5% HIV prevalence in high risk population) and the rest as low prevalence states. However, on the basis of vulnerability factors such as migration, size of the population and weak health infrastructure, the low prevalence states/ UTs have been further classified as Highly Vulnerable and Vulnerable states Based on the HIV surveillance data, epidemiological profile, risk and vulnerability, NACO has classified the 611 districts in the country into 4 categories viz. A, B, C and D many of them located within the so called low prevalence states. A category: More than 1% ANC/PPTCT prevalence in district in any time in any of the sites in the last 3 years B category: Less than 1% ANC/PPTCT prevalence in all the sites during last 3 years associated with More than 5% prevalence in any HRG group (STD/CSW/MSM/IDU) C category: Less than 1% in ANC prevalence in all sites during last 3 years with Less than 5% in all STD clinic attendees or any HRG with known hot spots (Migrants, truckers, large aggregation of factory workers, tourist etc) D category: Less than 1% in ANC prevalence in all sites during last 3 years with less than 5% in all STD clinic attendees or any HRG 1

6 or No or poor HIV data With no known hot spots/unknown. Information from AIDS case reporting indicates that sex continues to be the main route (86%) of transmission in most parts of the country. Blood products, intravenous drug use and perinatal transmission are the other routes. Intravenous drug use is the predominant route of transmission in the north eastern states of India. disproportionately higher level of prevalence of HIV infection as compared to other population groups including attendees of STD clinics. From the table, it is clear, that the response to the epidemic must be focused and prioritized with the high risk groups. There needs to be a coordinated, well focused and intensive set of interventions amongst the HRGs. In the general population, women and young people are becoming increasingly more vulnerable to the infection. According to the 2005 sentinel surveillance findings, 38.4% of the infected persons in the country were women. HIV and AIDS affect young people disproportionately. Nearly 33 per cent of the reported AIDS cases till June 2005 were in the 15 to 29 years age group. An analysis of the Annual Sentinel Surveillance data during the years showed that the three HRGs had a Thus, it will be important to focus also on the vulnerable group of women and young people and children whilst implementing comprehensive programs of HIV prevention, treatment, care and support. HIV Prevalence among High Risk Groups Site type Number of Sites per cent +ve 2003 per cent +ve 2004 per cent +ve 2005 Female Sex Workers Injecting Drug Users Men having Sex with Men ANC population STD population

7 Introduction Programmes for Children and HIV/AIDS Goal India: To halt and reverse the epidemic in India over the next 5 years by integrating programmes for prevention, care, support and treatment. P1: Primary Prevention among young people: 60% reduction in new infections in high prevalence States so as to obtain the reversal of the epidemic and 40% in vulnerable States so as to stabilize the epidemic. P2: Prevention of Parent To Child Transmission of HIV/AIDS: Universal access to PPTCT services. P3: Providing Pediatric Treatment: Provide ART to more than 90 per cent of children living with AIDS at the end of five years. P4: Protection, care and support of children affected by HIV/AIDS: 80% of children affected by HIV/AIDS linked to child welfare programs. The Unite for Children, Unite against AIDS campaign provides a framework for achieving results for children and AIDS. The 4 Ps approach as outlined above ensures that maximum impact and results for children are achieved in order to prevent new infections and mitigate the impact of the epidemic on those already infected or affected. The following pages give the programmatic update for each P area, highlighting the situation, current trends, programming strategy, key challenges and partners in the program. Let us together achieve results for children. 3

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9 Primary prevention among young people Preventing Infection Among Adolescents and Young People Goal: Reduction in rate of HIV inferction among young people Target 60% reduction in new infections in high prevalence states so as to obtain the reversal of one epidemic and 40% in vulnerable states so as to stabilize the epidemic. Issue Vulnerability Young People 2 are at the forefront of the HIV Epidemic today. Not only are they the most vulnerable group for the infection, they are also the group that can be the firebreak for the spread of the infection. In India, there are about 315 million young people years of age (Census 2001), nearly one third of the country s population. Physiologically, young people are more vulnerable to Sexually Transmitted Infections (STIs) than adults; girls more than boys. Gender imbalances, societal norms, poverty and economic dependence, all contribute to young people s risk of STIs. Many young people lack information, access to condoms and control over the choice of their marital and sexual partners and risks involved in unprotected sex. Almost 73 per cent of young people have misconceptions related to modes of transmission of HIV/AIDS 3 Few know where to access contraceptive supplies or other services. Other young people like street children, adolescent sex workers, orphans and migrants, are marginalized and are hence even more vulnerable. Their poverty forces them to endure situations that put them at risk of unprotected sex and substance abuse. Epidemiology HIV and AIDS affects young people disproportionately. Nearly 33 per cent of the reported AIDS cases till June 2005 were in the 15 to 29 years age group. Very young adolescents or children (10-14 years) or youth (10-24 years), because of their lack of correct information and life skills, behaviour of experimentation and above all their biological predispositions, are especially vulnerable to risks of HIV infection. The graph 4 above clearly shows the age group 15 to 29 and 30 to 49 years being most affected by the HIV epidemic. 1 Such knowledge includes correctly identifying two major ways to prevent the sexual transmission of HIV (using condoms and limiting sex to one faithful, uninfected partner), rejecting common misconceptions about HIV transmission and knowing that a healthy looking person can have HIV. 2 Young People includes persons in the age group of years as per global definitions 3 NACO, 2001, Disaggregated data from National Behavioural Surveillance Survey: KAP of Young Adults (15-24 years) 5

10 Less than 14 years years Age and sex wise distribution of Testing and positivity at VCTC CMIS years years years years >50 years Age not Specified Male Female Male Female Male Female Male Female Male Female Male Female Male Female Male Female Tested Positive But not all young people are at equal risk. In India million children are not within the school system (Selected Educational Statistics 2001, MHRD, Government of India). They have either dropped out at some stage, or just never had the opportunity to attend. They are found in different locations from homes in rural areas, to railway platforms and dockyards, to the streets and commercial sex work zones of cities. Vulnerable young people is a catchall phrase that represents this range of youth whose vulnerability to HIV infection is compounded by their social isolation, poverty, lack of opportunities for education, and stigmatising personal circumstances. The challenge for any kind of programming with this population is that they are difficult to reach. Their lack of formal education creates barriers to communicating health and safety information through traditional channels. Their life experiences of poverty, isolation, and sometimes even trauma, deprive them of the opportunity to learn how to protect themselves, or how to respect the integrity of their own minds and bodies. Of the total number of AIDS cases reported in India in 2004, 35.5% were in the age group of yrs the most productive section of the society. The median age at first sex is about 21 years for males and 18 years for females. However, there are wide inter-state variations in the country, ranging from as low as 16 years in AP, Bihar, MP, Rajasthan and UP to as high as 20 years in Kerala and Goa (rural female) and a low of 18 years in MP to a high of 25 years in Kerala (rural males). 4 National AIDS Control Programme III

11 Primary prevention among young people Thus, clearly an effective response program for HIV/AIDS amongst young people should be tailored as per risk segmentation. This should include the high risk groups like young people in sex work, injecting drug users, etc. as well as the bridge populations like young people who are clients of sex workers, sexually active young people, and the young people in the general population. Creating an enabling environment, breaking the silence around HIV/AIDS and sexuality, and ensuring universal access to complete knowledge, skills and services to all children and young people, thereby reducing vulnerabilities and risks to the HIV infection is the key towards achieving the goals and targets outlined above. Trends of knowledge and behaviours amongst High Risk Groups and Young People The Behaviour Surveillance Survey BSS 2001 and : The survey collected data on knowledge, attitudes and practices amongst high risk groups, like sex workers and injecting drug users. Further, data for the youth (15-24 years) sample was extracted from the larger population to understand the knowledge, attitudes and practices amongst this group information. The general population and high risk groups survey was also completed. Both the BSS surveys reveal wide variations in knowledge of HIV/AIDS between different states and between rural and urban populations. The graphs below highlight the trends amongst high risk groups like sex workers and injecting drug users as well as the youth population (15-19 years) for 2001 and : A specific sample of the youth population (15-24 years) was surveyed that gives a more accurate picture of the trends amongst the young people on HIV/AIDS related 7

12 Select Behaviour Surveillance Survey Indicators 2001 and 2006 Young People years BSS 2001 shows relatively low levels of complete information. The BSS 2006 shows an increase in the levels of knowledge; however, the levels are still very low in rural areas, especially amongst the girls. In the moderate prevalence and highly vulnerable states also we see relatively low levels of complete information amongst the rural areas, especially the girls. Sex Workers The sex workers data for 2006 shows relatively high levels of knowledge regarding HIV prevention; however, in Karnataka and Manipur the levels of knowledge are comparatively low. Also, in order to plan the response intervention better, it will be important to understand differences amongst age groups, especially the adolescents and young people involved in sex work. Injecting Drug Users The two data sets show an increase in levels of knowledge regarding prevention of HIVAIDS across most major metros, except in case of Delhi and Mumbai where one actually sees a decrease. One would need to disaggregate the 8

13 Primary prevention among young people seen a considerable amount of work being done in the area of prevention with high risk groups, bridge populations and the general population. Within the general population, an attempt to reach vulnerable groups like women, children and young people was also made. Various initiatives by the civil society also addressed HIV prevention activities at the field level including large scale mass media communication campaigns aimed at increasing awareness on HIV/AIDS and HIV services. data into age groups to understand whether younger age groups have less access to information. Also, a good understanding of the access to services by these high risk groups is required to plan an effective intervention. Prevention Programming Strategy India Review of NACP II strategy implementation The last several years of the epidemic have Below is a brief description of the programmes implemented during NACP II for the various population groups and the key challenges and lessons learnt for consideration in NACP III. Targeted Interventions The National Response has reached out to high risk groups like Sex workers and their clients, truckers, migrant workers and injecting drug users through supporting civil society initiatives and setting up counseling and testing centres and STD clinics at the district level. 9

14 The State AIDS Control Societies (SACS) in collaboration with NGOs have implemented 1033 targeted intervention projects across the country. Overall, TIs are estimated to have covered about 45% to 50% of the HRG 5 population in the country. One key challenge in the area of Targeted Interventions, however, is the need for disaggregated data in terms of age groups. In order to tailor the response as per risk segmentation amongst young people, it will be essential to understand the youth (15-24 years) within the larger HRGs ) more than 112,000 schools were covered 6 until the end of academic session. State wise data As seen above, there are wide variations in the coverage levels of AEP across the states. Maharashtra and Gujarat covered private schools as well and thus we see more number of schools covered than the total number of Government and Government MSJE/UNODC works with street children and injecting drug users with a specific focus on reducing vulnerabilities and high risk behaviours and increasing access to services. Young People in the general population Adolescent Education Programme in schools Out of 152,051 secondary and senior secondary schools in the country (Source Selected Educational Statistics, MHRD, 5 HRG: High Risk Group that includes sex workers injecting drug users, men having sex with men etc 6 Covered means 2 trained nodal teachers in the school with a plan of classroom roll out. 10

15 Primary prevention among young people aided schools. The program shall be scaled up to achieve 100% coverage across all Government and Government aided schools in the country by The last two years saw the implementation of AEP by the MHRD 7 that took the lead for ensuring that the five outputs, namely a) cocurricular adolescence education in classes IX-XI, b) curricular adolescence education in classes IX-XI and life skills education in classes I-VIII, c) integration of HIV prevention education in pre-service and in-service teacher training and teacher education, d) integration of HIV prevention education in programmes for out-of-school adolescents and young persons, and e) incorporating measures to prevent stigma and discrimination against learners/ students and educators and ensure access to life skills education for HIV prevention into education policy were achieved. A key challenge area in the Adolescence Education Programme is the poor reporting of school level activities which include co curricular sessions and activities for students. There is thus, a lack of understanding of program reach to the children, as well as in understanding the outcome and impact of the program. It will be important to strengthen the monitoring systems for the AEP during the next five years. Another important area of work shall be the finalization of an Education Policy for HIV/AIDS ensuring that no child is discriminated or stigmatized in education systems for being affected by HIV/AIDS. Other programs implemented for young people University Talk AIDS programs initiated for college students to spread awareness of HIV and safe sex. Reached over 7 million in the country (NACO 2004). Youth Unite for Victory on AIDS campaign launched in June 2006 by the Ministry of Youth Affairs and Sports and NACO in collaboration with seven National Youth Organizations, also intends to strengthen ongoing efforts to raise sexual and 7 MHRD: Ministry of Human Resource Development, with the NCERT National Council for Education Research and Training being the lead implementation agency. 11

16 by various partners, including international agencies and civil society. This has led to the creation of a cadre of youth leaders/ peer educators bringing about change in knowledge, attitudes and practices and behaviours in the communities they live and work in. reproductive health awareness among school and college going students ( NRHM AND RCH II Incorporates the Adolescent Reproductive and Sexual Health Strategy which articulates the programs for conducting health education activities in schools as well as conducting specific programs for out of school youth. These include sessions by ANMs, Anganwadi workers, ASHAs, youth groups etc. Youth Friendly Health Services: is a specific strategy in RCH II, providing services specifically intended for adolescents at the public health care facility level. However, specific efforts will need to be made to reach out to unmarried young men and women and the most at risk adolescents. Peer education as a strategy to reach young people Peer education is a popular and effective strategy to reach young people with HIV/ AIDS information the world over. In India, several initiatives have been implemented UNICEF is working across 29 districts in 7 States since the last two years, building capacities of nearly 40,000 peer educators and reaching out to nearly 1 million young people and communities with HIV prevention education. UNODC works with street children and injecting drug users with a specific focus on reducing vulnerabilities and high risk behaviours and increasing access to services. The CHARCA, Coordinated HIV/AIDS Response through Capacity Building and Awareness is a Joint United Nations project to increase capacities and reduce vulnerability of young women in the age group in India to STIs and HIV infection. The project is a multi stakeholder, general population intervention at the district level. The stated goal of the project is to raise awareness, decrease vulnerability, and reduce risk among young women in the age group in select districts in India. CHARCA was implemented in the districts of Bellary (Karnataka), Kanpur (Uttar Pradesh), Aizawl (Mizoram) Guntur (Andhra Pradesh) Kishanganj (Bihar) and Udaipur (Rajasthan). In this general population intervention the primary stakeholders were young women in the age group of years. Men, spouses, families, health providers, community and religious leaders, NGOs, the media, 12

17 Primary prevention among young people politicians and policy makers were the secondary stakeholders. This is a partnership between government, NGO s, donors, and the Joint UN System (ILO, UNDP, UNESCO, UNFPA, UNICEF, UNIFEM, UNODC, WHO and UNAIDS). UNFPA is supporting the Kishori Shakti Yojana (KSY) in Orissa, a special program focusing on gender disparities and enabling environment for holistic growth and development of adolescent girls. This scheme is a redesign of the already existing Adolescent Girls (AG) Scheme, being implemented as a component under the centrally sponsored Integrated Child Development Services (ICDS) scheme. ICHAP/SAMASTH: The Link workers programme started in Bagalkot in 2002 with CIDA funding and is now being continued with USAID funding. The programme works with sex workers, adult men, youth, women, pregnant women, PLWHA, TB patients or suspected TB cases and affected children. It is important to recognize that the foundation of HIV/AIDS prevention education is to endow youth with the self esteem, personal respect and interpersonal skills to have positive attitudes towards their bodies and sexuality, and to make informed sexual choices. The peer leaders embody these values, sensitivity, and confidence themselves. Particularly, female facilitators have to be confident and articulate, not something consciously taught to (or expected of) young Indian women. By talking about traditionally taboo subjects like sexuality and HIV/AIDS in their communities, female facilitators and educators embody a powerful potential for change. Their example of openness and confidence translates to the other younger girls they work with. Programming for Young people what have we learnt? The requisites for effective programming among young people 8 include a) establishing programme management systems within the district or community system, and b) Defining characteristics of young people not in formal structures. The key components important to consider in the framework for effective programming with young people, are namely, a) Young People need accurate Information increasing access and comprehension b) Building life Skills 9 to ensure translation of information into knowledge, c) Linkages to services/ increasing access to services for promoting adoption of behaviour, d) Social mobilization and advocacy among gatekeepers and influencers for creating supportive environment, e) Communication campaign, f) Monitoring and Evaluation 8 Strategies that work: Reaching Young People in Vulnerable Communities: Documenting programmes for working with young people in vulnerable communities to build evidence base for programming, UNICEF WHO defines life skills as abilities for adaptive and positive behaviours that enable individuals to deal effectively with the demands and challenges of everyday life. Following 10 core life skills are identified for young people- Self Awareness, Coping with Emotions, Coping with stress, Empathy, Decision Making, Problem Solving, Creative thinking, Critical thinking, Effective Communication, and Interpersonal Relationship skill 13

18 Thus, the risk pyramid for young people shows rising levels of risk as per vulnerabilities and high risk behaviours. The diagram shows the factors, as well as components of interventions at different levels of the pyramid. NACP III Under NACP-III, emphasis on 100% coverage of all high risk groups through the targeted interventions program as well as full coverage of the bridge populations has been given the highest priority. It will thus, be important to ensure that the young people, namely the adolescents in sex work and the adolescents practicing injecting drug use, those that are sexually active are approached as a special group within the larger TI program, tailoring the response to the specific needs of this most at risk population (MARA young people). The youth and children in special settings or the group in the especially vulnerable adolescents (EVA) viz., young people in high prevalence districts, school drop-outs, especially girls, working children, children of sex workers, orphans of HIV/ AIDS infected and affected shall be focused targets for specific interventions, especially at the district level. The larger group of young people in the general population, shall be covered through mainstreaming efforts with the education and health and development sector. Strategies The strategy to achieve the objective of reducing the overall level of the epidemic: are as follows According the highest priority to the saturation of the three high risk groups 14

19 Primary prevention among young people (HRG) - commercial sex workers (CSWs), injecting drug users (IDUs) and men having sex with men (MSM) - with a comprehensive package of preventive services. This group also includes the MARA Most At Risk Adolescents and special focus shall need to be given to this group within the larger TI interventions. Addressing clients of SW through SW interventions, through condoms, social marketing campaigns and through addressing men in occupation settings. Truckers and migrants, categorized as bridge populations and prioritized after the three high risk groups, are key occupation groups who will be addressed. This group also includes the MARA group of young people who are sexually active and specific focus will need to be given to this group within the larger TI interventions. The above two groups shall be reached by: a. TI interventions by NGOs and CBOs supported by SACS b. Link workers as outreach workers in the districts and communities as a specific strategy in NACP III to reach out to scattered and hard to reach high risk groups. Reaching out to the high risk groups who are in scattered numbers in rural areas, other highly vulnerable population groups in the community, including youth (15-29 years). This group includes the EVA group of young people. This group shall be reached by: a. Link workers as outreach workers in the communities b. Peer volunteers at the community / village level that shall work with the link workers to ensure reach to groups of MARA and EVAs. The Young people in general population (in schools, colleges, universities, uniformed services and out of school/non-student youth in community) which form the majority of young people and adolescents are at low risk of HIV infection. The strategies for HIV prevention needed in this category are equipping young people with basic information on HIV and life skills to make safer choices. (Programming through Schools, Colleges etc) The overall outcomes envisaged under NACP-III for young people are reduction of risk behaviour, especially among young people, and reduction in rate of HIV infection among young people. NACP III Indicators Percentage of youth with accurate knowledge of HIV/AIDS (who recall 3 modes of transmission, 2 modes of prevention and who reject major misconceptions about HIV transmission) Median age at first sex among young men and women Percentage of youth in high prevalence / high priority districts using youth friendly information centres / youth friendly health services in their towns / districts. Percentage of schools with Adolescent Education Programme with teachers trained and who have used the curriculum in the last academic year (from 50% in 2005 to 100% in 2012) Percentage of students covered under the School AIDS programme. From 40% in 2005 to 100% in

20 Percentage of out of school youth reached by HIV awareness programme. From 10% in 2005 to 100% in 2012 Key Partners Key ministries involved with HIV prevention activities are the Ministry of Health and Family Welfare NACO (targeted interventions, programmes for general population and vulnerable groups, including women and children), NRHM outreach activities with ASHA, SHG groups etc, Ministry of Women and Child Development integration with women, adolescent girls and children programs, street children and vulnerable group programs, Ministry of Human Resource Development programs for children in educational institutions, schools, colleges, Ministry of Social Justice and Empowerment MSJE - programs for injecting drug users and other venerable groups, Ministry of Youth and Sports Affairs programs for young people not in schools, in community settings etc. The civil society response is integral to HIV prevention activities and in contributing to the enabling environment to implement these programs. Also, the Positive peoples networks are playing a major role in strengthening prevention programs and making these more effective. Mass media, print, TV, radio, etc are key players in HIV prevention. A critical component for any HIV prevention program is the challenge to break the silence and create an environment for discussions on sensitive issues like sexuality, reproductive health and HIV/AIDS. UNFPA, UNODC, UNDP, UNIFEM, WHO, UNAIDS,UNESCO, AND UNICEF are working jointly with the Government of India providing technical and financial support to the implementation of various programs for young people. Bilateral donors and international foundations are key partners in the HIV prevention program of India. The prevention of HIV/AIDS needs a multi sector, multi stakeholder approach to understand and respond to various issues including psychosocial, cultural, health and development issues. Thus, one of the key challenges in implementing HIV/AIDS prevention programs is a clear understanding of the wide scope of the HIV prevention programming whilst keeping the focus and strategies well defined in order to achieve tangible and visible results. Thus, prevention programs for HIV/AIDS reaching out to the vulnerable groups including women and children and young people should be implemented as a cross cutting issue in relevant sector programs. Challenges and the way forward Learning from the lessons of implementing prevention programs for young people, some of the key components and strategies for an effective response are: a) Tailoring the response to the epidemic, understanding and knowing your epidemic and the response required in terms of epidemiological trends, social and sexual 16

21 Primary prevention among young people networks, cultural, social norms and resources available b) Strong district level and community level ownership to the program by establishing programme management systems within the district or community system, c) Defining and understanding characteristics of young people not in formal structures. d) Strengthening education and health services and social support services and linkages between services to ensure the effectiveness of prevention programs. e) An ongoing advocacy strategy to create and strengthen the enabling environment to ensure reach to young people in educational institutions, the vulnerable young people and those most at risk for infection. f) Ensuring that there is disaggregated data in terms of age groups, gender, high risk groups, HIV infection data 17

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23 Prevention of Parent to Child Transmission of HIV Prevention of Parent to Child Transmission of HIV Goal: Universal access to PPTCT services Target: By 2011, ensure that 80% of the estimated annual cohorts of HIV positive women in the country receive prophylactic anti retroviral therapy. Issue The most significant source of infection in children and infants is the transmission of HIV from mother to child during pregnancy, childbirth or breastfeeding 1. In India, this accounts for 3.45% of infections due to perinatal transmission of HIV. This accounts for nearly 23,490 children contracting the infection from their mothers each year. With an effective PPTCT program, this can be decreased to almost zero percent rate of transmission of the virus, thus, preventing new infections in children through this route. any care for themselves and to protect their babies form HIV. NFHS III data shows that only 57% of ever married women (15-49 years) have heard of AIDS. Whilst analysis of level of knowledge 2 on HIV of women who access PPTCT services shows that there is a dramatic increase in levels of knowledge and providing a real Vulnerability of women to HIV infection is cause of concern as studies show that a majority of women who seek ante natal services in public health system have acquired infection from their spouses and they had no history of risk of exposure to HIV. Lack of access to information also increases vulnerability as they remain unaware of potential risk and do not seek 1 Prevention of Parent to Child Transmission of HIV, Revised Training Curriculum and Manual, NACO, UNICEF, WHO and CDC, Data collected during counseling sessions in the PPTCT program 19

24 opportunity to protect themselves and their babies from infection. Therefore, empowering women to increase their capacity to take charge of their health needs is the most effective strategy and has impact on many issues related to HIV even with in the family system such as their own health seeking decision making actions. When educated they can decide on treatment and prevention of STI, preventing themselves from HIV, know their own status before delivery, take decisions for ARV prophylaxis and infant feeding choices to minimize the chances of infection to their children. Lack of access and utilization of MCH services and weak outreach system continues to be a barrier to provide HIV prevention and treatment services to eligible HIV positive pregnant women. The trends of women who deliver in State %Institutional Deliveries AP 69 Karnataka 67 Maharashtra 66 Manipur 49 Nagaland 12 Tamil Nadu 90 Rajasthan 32 Uttar Pradesh 22 MP 30 Orissa 39 WB 43 Bihar 22 Gujarat 55 institutions has been analysed in NFHS III (refer table). Although there is shift towards increase in institutional deliveries, we still see a large percentage of deliveries occurring at home, with wide variations between States. Percentage of institutional delivery ranges from as low as 12% to as high as 90% with wide variations across States. In HIV high prevalence states and districts that have low institutional delivery coverage with PPTCT services translates to a large number of babies being born needlessly with HIV. Epidemiology It has been estimated that out of 27 million pregnancies in India every year nearly 78,300occur in HIV positive mothers leading to an estimated cohort of 23,490 infected babies 3. Based on the antenatal prevalence (ANC), States and districts in India have been classified as high prevalence, moderate prevalence and low prevalence, with districts being further classified as A, B, C, D 4 with the largest proportion of estimated HIV positive women located in A category district. Women seemed to be on the periphery of the epidemic a decade ago; today they are at the epicentre. Presently, almost 30 per cent of India s population living with HIV/AIDS comprises women. Among women, the peak age for HIV prevalence tends to be around age 25, which is 10 to 15 years lower than the men 5. In 2004, it was estimated that 22 per cent of HIV cases in India comprised housewives with a single partner 6. 3 Joint Technical Mission on PPTCT 2006 (These targets have been calculated based on the proportion of deliveries that occur in public and private sector and their coverage and anticipated proportion of pregnant women receiving ARVs) 4 ABCD classification of districts based on ANC prevalence and HIV prevalence in High risk groups in the last three years. 5 UNAIDS and WHO AIDS Epidemic Update: December 2001 (UNAIDS/01.74E WHO/CDS/CSR/NCS/2001.2). Geneva: UNAIDS/WHO. 6 Hefferman G 2004 Housewives account for one fifth of India s HIV cases, experts says, India Post and NCM, April, 16 20

25 Prevention of Parent to Child Transmission of HIV In the general population, women and young people are becoming increasingly more vulnerable to the infection. In many states, more and more women in monogamous relationship are getting infected from their husbands. The male - female ratio of infected persons also shifted from 55/100 males in 2001 to 60/100 males in 2005, indicating increasing feminization of the epidemic 7. Programme strategy In March 2000, NACO initiated a 2-year PPTCT feasibility study aimed at designing an implementation model of PPTCT for the public health sector. The study supported by the Government of India and UNICEF involved 11 major hospitals of the 5 most affected states in India. Besides demonstrating that it was possible to implement PPTCT in the public sector, these studies also found that the programme provided opportunities for HIV prevention counseling. Based on the results of this study, PPTCT programme was scaled up in the country with Nevirapine as the regimen of choice. PPTCT services are offered in all the districts of the country. Conceptual Framework for PPTCT programming In India the PMTCT program is integrated into the existing antenatal care (ANC) settings, and has been reframed as Prevention of Parent to-child Transmission PPTCT: The Four Prong Strategy I II III IV Prevention of HIV in Young People Prevention of HIV infection in women of child bearing age Prevention of Unintended Pregnancies in HIV positive women Prevention of transmission from a HIV infected woman to her infant Care & Sypport for the mother and her family 7 NACP III program Strategy Implementation plan 21

26 (PPTCT) of HIV to emphasise the role of the father in both the transmission of the virus and management of the infected mother and child. Targets set under the new NACP III strategy is to cover 7,500,600 pregnant women with counseling and testing services and 75,600 HIV positive women with ARV Prophylaxis services in the next five years ( ). Comprehensive PPTCT approach consists of a combination of interventions offer to prevent HIV infection (Prong 1) in different stages of life cycle: among adolescents, premarital, and young married couples. Then it extends to link up with safe motherhood (maternal health) interventions of ante-natal care (ANC), safe delivery and post-natal care (PNC) where efforts should be exerted for pregnant women and their partners to remain negative. Helping women with HIV to prevent unwanted pregnancies, Prong 2, is an important component for prevention of mother to child HIV transmission. There is a weak linkage between on-going PPTCT interventions and relatively important, though often neglected component of this comprehensive approach. The third prong belongs to interventions to reduce HIV transmission from infected women to their children however it needs to be complemented by Prong 4 that are interventions that address the provision of treatment, care and support a care continuum for HIV infected women, their children and families. The expected flow of PPTCT services package at the health care facility level is ANC Visit (Enrollment) Pre-test Counseling Informed Consent for HIV testing HIV testing as per National guidelines Post-test Counseling Informed Consent for Nevirapine Nevirapine prophylaxis to mother during labour Neonate Monitoring Nevirapine prophylaxis to the new born Follow up 6 weeks and 6 months for DNA PCR + Regular follow up in well baby clinic Continuum of Care and Support Although, the Nevirapine based regimen is simple to deliver and has an efficacy rate of 50% in prevention of HIV transmission in the mother baby pair, more efficacious regimes have emerged over the last two years with much lower risk of developing resistance to the drugs. Hence a study will be conducted to assess the feasibility of introducing a new revised regimen in 2007/08. Based on the results of this study, NACP-III will plan a shift 22

27 Prevention of Parent to Child Transmission of HIV in the prophylactic antiretroviral regimen for HIV positive mothers and their infants. NACP III TARGETS Number of PPTCT centres established: 4955 Number of pregnant women covered through PPTCT counseling: 7.5 million NACP III Indicators Percentage of districts providing PPTCT services No of service outlets providing PPTCT services Percentage of pregnant women being tested for HIV and collecting test results (each is a separate indicator) % of women in PPTCT / ANC who are HIV positive No. & % of HIV infected women receiving a complete course of ARV prophylaxis from 20% in 2005 to 100% in 2012 No. & % of infants of HIV + mothers knowing their status by 18 months % of infants born to HIV infected mothers who are infected Number of HIV positive mothers referred to ART centre Trends in coverage Prevalence among women % (2007) 71,000 estimated HIV positive pregnant women every year 2.45 million pregnant mothers received counseling and testing services (2006) 44% facility level coverage of HIV positive mothers received ARV prophylaxis (2006) Percentage of women in PPTCT / ANC referring their partners for testing It is estimated that 80% of the estimated annual cohorts of HIV positive women in the country will receive prophylactic anti retroviral therapy, through a total of 4955 ICTC 8 centers. The number of women registered in ANC clinics that received comprehensive PPTCT services (pre/post test counseling, HIV testing) increased dramatically between 2002 and 2006 (from 42% in 2003 to 78% in 2006). However, there is a dramatic decrease in number of positive pregnant women who receive ARV prophylaxis. The number of health care facilities offering PPTCT services has also increased from 11 in 8 ICTC: Integrated Counseling and Testing Centres NACP III 23

28 2003 to 2433 in 2006 (NACP III target 4955 centres by 2012 at all levels of health care). As of date there are 1027 centers providing these comprehensive services. Access to PPTCT services The table highlights the need for the rapid scale up of the PPTCT program to ensure universal coverage. This would require increase in the percentage of institutional deliveries as well as involvement of private health care sector. Of the 27 million deliveries which take place annually in the country, about 60% are institutional while the remaining is noninstitutional. Of the institutional deliveries, 50% occur in the public sector while the remaining 50% occur in the private sector health care system. Year wise population based coverage with PPTCT prophylaxis State AP Karnataka Maharashtra Manipur Nagaland Tamil Nadu Rajasthan Uttar Pradesh MP Orissa WB Bihar Gujarat Antenatal care is the main entry point for PPTCT and its coverage needs to be high if PPTCT targets and corresponding reduction * Integrated counselling testing centre offer counselling and testing to all groups of clients (walk in, STI patients, women seeking antenatal care etc.) within one facility. 24

29 Prevention of Parent to Child Transmission of HIV of new born with HIV infection are to be reached. The coverage will also depend upon the extent and quality of integration with the National RCH program that provides all maternal and child health services for mothers and children at district level and below. The tables below show the increase in the number of women who were tested and found postive in select states. The table below shows the number of positive women who received ARV prophylaxis in the last three years. Scaling Up NACP-III will scale up PPTCT services through public-private partnerships as well as extend upto the level of CHCs as part of Integrated Counseling and testing centres. The aim is to prevent vertical transmission of HIV in an annual cohort of 78,300 HIV positive pregnant women throughout the country. In addition, NACP-III will strengthen referrals and linkages. Till now CD4 counts were performed among a small percentage of HIV positive pregnant women. To overcome this gap, NACP-III will set up an institutional 25

30 Scale up plan for PPTCT services NACP III Year Year 1 Year 2 Year 3 Year 4 Year 5 Number of pregnant women 2,025,000 3,782,000 4,900,000 6,500,000 7,500,600 to be covered Number of HIV positive women to be covered 20,000 36,700 55,000 71,000 75,600 mechanism to know the CD4 count of all pregnant positive women to initiate ART among eligible mothers. Challenges and way forward Actions required towards implementing the strategy under NACP III Programmatic To pilot the feasibility study for implementing the multi drug regimen in India across select sites in 2007 and then make necessary changes to the current drug regime in the PPTCT program. To reach out to the private sector for providing PPTCT services. To decentralize PPTCT service delivery to the sub centre level. As per NFHS III data, nearly 50% of ANC mothers receive the required three visits during ANC and it will be important to ensure that PPTCT services are a part of the ANC services at all levels of public health care delivery. This translates into developing strategies for mobile PPTCT services, PPTCT service access through trained birth attendants, PPTCT access through community outreach workers etc. To strengthen linkages between PPTCT, ART programs and pediatric care and treatment services to ensure all women and children access preventive and treatment over a continuum of care. Management Program implementation (includes planning, delivering the program, monitoring and evaluation) to the district level will be decentralised. Supply management systems to ensure uninterrupted supply of testing kits, drugs for treatment and prophylaxis etc will be strengthened. Follow up services to decrease loss to follow up, piloting innovative voucher schemes, smart card systems etc. will be enhanced. Partners Technical Resource Group A national technical resource group for HIV ART including PPTCT programs, constituted by NACO has representation from all key stakeholders. At State level, State PPTCT steering committee meets quarterly to review programmatic and policy level decisions. Partners The National AIDS Control Organization (NACO) is the nodal agency for all HIV/AIDS programs. For scaling up and to ensure quality implementation of the PPTCT program, the multi 26

31 Prevention of Parent to Child Transmission of HIV sectoral approach with the other departments of the Ministry of Health and family welfare (reproductive and child health, Indian Council of Medical Research), Ministry of Women and Child development, UNICEF, WHO, UNFPA, NGO partnerships and civil society partners, including positive networks is critical to the success of the program. Partnerships with professional bodies like FOGSI 9, IAP 10, IMA 11 and IAPSM 12 are also a part of the framework of the implementation of the program. 9 FOGSI: Federation of Obstetrics and Gynaecology, 10 IAP: Indian Academy of Pediatrics 11 IMA: Indian Medical Association 12 IAPSM: Indian Association of Preventive and Social Medicine 27

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33 Providing Pediatric Treatment Providing Pediatric Treatment Goal: Provide ART to more than 90 per cent of children living with AIDS at the end of five years Target: 40,000 children are on ART Issue Mother to child transmission of HIV/AIDS is the most significant source of infection among children. 3.45% of HIV infection in India is through the perinatal route. Blood and blood products, however, remain an important source and are responsible for infection in % of total cases 1. Without intervention, the risk of transmission from an infected mother to her child ranges from 15% to 25% in developed countries and from 25% to 45% in developing countries. This difference is largely attributed to breast-feeding practices (See Table 2 ). The proportion of HIV transmission attributable to breast-feeding depends on feeding practices. Exposure to HIV transmission continues for as long as a child is breastfed. Prolonged breast-feeding up to 18 to 24 months accounts for increased risk of HIV transmission to infant compared to shortened breast -feeding up to 6 months. Mixed feeding, the norm for the majority of women in India (>90%), Estimated risk and timing of MTCT in the absence of interventions During pregnancy 5-10% During labour and delivery 10-15% During breast-feeding 5-20% Overall without breast-feeding 15-25% Overall with breast-feeding to 6 months 20-35% Overall with breast-feeding to 30-45% 18 to 24 months has been shown to double the risk of postnatal HIV transmission. Children infected with HIV often have severe disease when first evaluated, or they may develop AIDS over time, much like adults infected with HIV. Infants and young children normally have higher CD4+ counts than do adults. The normal CD4+ count in children varies with age, but it is equal to the adult value by the time the child is 6 years old. Children involved in the epidemic face a set of psychological and social issues that must be addressed, not overlooked. It is critical to ensure that parents and caregivers understand how to look after the child in terms of health needs as well as nutritional and emotional needs. Malnutrition is a common condition in HIVinfected children and is a major contributor 1 Merchant RH, Oswal JS, Bhagwat RV, et al. Clinical profile of HIV infection. Indian Pediatr 2001; 38: Lodha R, Singhal T, Jain Y, et al. Pediatric HIV infection in a tertiary care center in north India: early impression. Indian Pediatr 2000; 37: , Dhurat R, Manglani M, Sharma M, et al. Clinical spectrum of HIV infection. Indian Pediatr 2000; 37: NACO IAP, Pediatric care and treatment guidelines, India

34 to mortality in both HIV-uninfected and HIVinfected children. In HIV-infected children, wasting (i.e. low weight for height/ length) has been associated with reduced length of survival, while weight loss has resulted in increased infectious complications in children with AIDS. Conversely, HIV has been associated with nutritional disorders, and immune status and level of viral replication may be important in predicting growth outcomes. Nutritional assessment, i.e. the systematic evaluation of current nutritional status, diet and nutrition-related symptoms, is critical in the early identification of malnutrition and poor growth as well as in the monitoring of HIV disease progression and treatment efficacy for children on ART 3. HIV is already ravaging hard won child survival gains in some of the highly affected countries where up to 58% of the under five mortality is attributable to HIV/AIDS. Current evidence suggest that HIV infected children follow a more aggressive course of illness than adults, with 30 % dying before the age of two, 50 % at age two and most of them dying before 5 years of age. The majority of these deaths could be avoided through early diagnosis and timely provision of effective care. The transmission rate of nearly 30% as explained above, from an infected mother to her baby adds a pool of approximately 23,490 infected children each year in India 4. However, with the current uptake coverage of HIV testing pregnant women in India, over 90% of these exposed infants remain unknown. Even when the HIV status of the mother is known, only 6% of all infants are followed up at 8 weeks of age. Based on the current survival rates with nearly no diagnosis and treatment, almost 50% of these die in the first two years of life. Epidemiology The manifestations of the infection vary widely among infants, young children and adolescents and are also dependent on the mode of transmission of the virus. Children who acquire the infection from the mother are mostly asymptomatic and do not have any abnormal findings on clinical examination at birth. The mean age of presentation is 17 months, though sometimes the symptoms may not be apparent even till the age of 7 years. On the basis of age of presentation, these children can be divided into three groups. The first group rapid progressors consists of infants who have manifestations of HIV-infection within the first few months of life. Opportunistic infection and neurological manifestations are the usual clinical features that are also noted in these children. These are seen in 20-30% of cases, and they undergo a rapid natural downhill progression. The second group consists of children who develop manifestations after the age of 1 year and they usually display failure to thrive, recurrent bacterial infections and lymphoid interstitial pneumonitis. The third group slow progressors comprises of children who reveal minor manifestations later in their childhood and in that respect, might be considered adult equivalents 5. 3 NACO- IAP Pediatric care and treatment guidelines, India Based on ANC prevalence of 0.8% (2006) and the Birth Rate of 2.4; 189,000 expected pregnant positive mothers annually. 5 Manual for management of HIV /AIDS in children NACO, IAP, WHO and UNICEF

35 Providing Pediatric Treatment Children who acquire the infection due to transfusion of infected blood tend to have an incubation period ranging up to 4 years. However, the manifestations seen once they are symptomatic are similar to those in perinatally infected children. NACP III TARGETS The target set under the NACP III PIP is to reach children at the end of the year NACP III Indicators No & % of children eligible (by CD4 count) receiving ART by age and gender Number of NGOs involved with provision of care and support to affected children. From 2% in 2005 to 100% in 2012 No of children requiring ART. From in 2005 to in 2012 Programme Strategy Paediatric ART programme is currently implemented through all the existing 104 ART centres. As part of the scale up plan, by 2012, a total of 250 ART centres shall be equipped to offer Paediatric ART services in the country. This ensures single point delivery of services to both parents and children and is supported by a comprehensive Paediatric referral system linking children to follow up care in the communities, nutritional support if required, as well as psychosocial support. Proposed Paediatric centres of excellence in each region of the country shall support the Paediatric ART program in terms of tertiary referral care, research, monitoring systems, and continuous capacity building at various levels of health care delivery. The first Centre of excellence for Paediatric HIV care has been set up at Kalawati Saran Children Hospital New Delhi, 6 more centres are proposed to be set up across the country by end The National Operational Framework titled Guidelines for HIV care and Treatment for Infants and Children was completed by NACO and the Indian Academy of Paediatrics (IAP) supported by UNICEF, Clinton Foundation and WHO in These guidelines aim to guide paediatricians in public and private health care providers to diagnose, treat and provide care and support to HIV infection in infants and children. The guidelines describe recommendations for practice as well as guidance in dealing with special cases. This guideline is a living document and will be subject to change as treatment options of HIV/ AIDS is a rapidly evolving field. 31

36 One of the key priority steps for providing treatment to infected children is the early diagnosis of these children and ensuring their follow up. This will be done by strengthening the access and follow up of PPTCT services as well as by strengthened all round general MCH services and ANC centres equipped to handle cases of HIV positive mothers. For a child diagnosed with AIDS (infection through the mother or other routes), the areas of importance include complete work up of the child (CD4, viral loads), nutritional support, immunization both routine and special vaccines, antiretroviral therapy, prevention and management of opportunistic infections (OIs) and last but not the least, access to appropriate counseling and support services for further treatment and psychosocial issues. The Paediatric ART comprehensive package of services includes early Infant diagnosis by DBS -PCR technology for exposed children under 18 months of age and cotrimoxazole prophylaxis of all exposed children. The National Paediatric initiative for children living with HIV was formulated by NACO with the support of Indian Academy of Paediatrics (IAP), Clinton Foundation, UNICEF and WHO in mid The initiative is working with a target for providing ART to 10,000 children by mid Paediatric ART coverage As of May 2007, nearly 13,000 positive children are in Pre ART care in 107 ART centers, out of which approximately 5, 500 are currently on child friendly fixed dosage combination first line drugs. This comprises 7.3% of the total 75,000 PLHA currently on treatment in the country. Plan for Paediatric ART in NACP-III It has been extremely challenging to understand the estimates of infected children in need of treatment in India. At present PCR diagnosis is unavailable in India, restricting diagnosis to children over 18 months of age. Thus, estimates for program planning have been done using various techniques, calculating from 32

37 Providing Pediatric Treatment Scale up plan for Paeditric ART services - NACP III Scale up year Estimated No. of children on ART 10,000 15,000 20,000 30,000 40,000 ANC prevalence and risk of transmission to the baby, as well as survival rates for infected children based on global experience. For babies below 18 months, early diagnosis will be done using DNA PCR at 6 weeks of age as per protocols such as: a repeat test if positive and after six months in case of it being negative; in cases of children breastfed by positive mothers; repetition of the test after 6-8 weeks after stopping breast feeding. In case of children more than 18 months same policy as for adults will be adopted. Monitoring of ART will be done using CD4 counts for all infected children. Children with HIV are vulnerable to opportunistic infections (OIs) - which are the infections that ultimately cause death. PCP (a type of pneumonia) is a common OI, particularly in very young children. The antibiotic co-trimoxazole is effective in preventing PCP and various other opportunistic infections. The use of such antibiotics can postpone the time at which ARV treatment should be started. At the end of 2004, WHO recommended that all children born to HIV positive mothers but whose HIV status is unknown be given co-trimoxazole. Under NACP III, all infected children will have access to drugs to prevent and treat OIs. Impact of treatment and link to social protection The graph above clearly highlights the importance of ART treatment, Cotrimoxazole as well as early diagnosis in terms of the impact to survival of infected children. 33

38 The benefits of cotrimoxazole prophylaxis also can be clearly seen 6 with improved rates of survival even with no ART treatment. In NACP III, there is a clear focus on providing comprehensive Paediatric care and treatment to all infected children. These children and their families will also have access to all social protection, including social welfare services and schemes. Any family that requires specific support for eductaion, non HIV medical care, legal aid, psycho social counselling will be provided access though child protection services of MWCD and NRHM. Technical and Management Challenges Scaling up early infant diagnosis for HIV and monitoring disease progression (PCR, CD4%) is slow and difficult due to limited numbers of PCR testing facilities available at present. An alternative to this, which has been proposed, is the DBS method to enhance the outreach for testing and diagnosis. Standardizing DNA PCR testing and streamlining logistics of providing DBS methodology at the facility level whilst ensuring quality assurance at various levels is a challenge that can be overcome only if there are systems that are more efficient. The first Centre of Excellence for Paediatric HIV care has been functioning well so far as the case load is manageable for the current staff capacity. But the as the case loads go up, unless the PPTCT reach improves, there will be need strengthen the management in this centre. In addition, some of the other aspects, which are coming to the fore, are the lack of very strong follow up process, lack of nationally endorsed protocols on disclosure, counselling, and adherence for children, which is creating a vacuum for the service providers to take the right approach in dealing with children of different age groups in this respect. There have been discussions on introducing a supplementary nutrition component for children on ART. The national technical group working on this aspect is yet to finalise the policy and guidelines for nutritional support for Paediatric HIV. The percentage of identified positive children before the age of 2 years is very low. This demands that the PPTCT programs have to improve their quality and linkages with other sectors and departments, especially the DWCD, so that there is more proactive community based interventions to identify affected pregnant women and ensure access to PPTCT for them. There also need to strengthen follow up programs at facility and community level by ensuring convergence of various health and child welfare programs for the mother and child at all levels. Partners Partners include WHO, UNICEF, Clinton Foundation and WFP. 6 DRAFT Report: Modeling to understand estimates of children in need of ART, UNICEF

39 Providing Pediatric Treatment Implementing Partners: The Paediatric ART program is implemented with key partnerships within the Government Ministries and Departments as outlined in the PPTCT section. However, professional bodies such as the Indian Academy of Paediatricians and key international agencies like UNICEF, WHO, Clinton foundation, World Food Program and Children Investment Fund Foundation (CIFF) are also key stakeholders in the program. 35

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41 Protection and care for children affected by HIV/AIDS Protection, care and support for children affected by HIV/AIDS Goal: The goal of the National AIDS Control Programme and the 11th five year plan of MWCD is to achieve the highest quality of life for HIV infected and affected children and their families This implies the following objectives: Ensuring access to basic services for these children; Prevent children from becoming subjects of discrimination, neglect, abuse or exploitation due to them being placed in a vulnerable situation owing to the family being affected by the disease. and Redress protection failures like discrimination, abuse, neglect and exploitation which any of them may end up victims of due to their situation. Target: 80% children affected (including infected) by HIV AIDS linked to child welfare scheme. Situation in the country In 2002, an estimated 4 million children lived on the street 1 and approximately 9 per cent of all children under the age of 18yrs had lost one or both parents which amounts to 2 estimated 35 million orphans due to all causes. According to a recent study completed by Ministry of Women and Child Development Study on Child Abuse: India 2007, out of the respondents they contacted in 13 states (both children and young adults [15-24yrs]) 21.90% reported facing severe forms of sexual abuse. Children on the street, children at work and children in institutional care reported the highest incidence of sexual assault. Although the numbers as above makes it evident that children who are in need of care and protection services is much beyond the purview of HIV/AIDS, there is a substantial number among them who may fall into the definition of children affected by HIV/AIDS. These are children from families affected by the disease, who have lost a parent or both parents to AIDS and the ones living with HIV/ AIDS. There is limited data on the number of children infected with HIV in India. HIV/AIDS impacts financial conditions of the family, but there is also a psychological impact of loss of parent. Apart from this there are organized crimes of trafficking and child labour, changing values of sexual behaviour, an educational system with a 1 Silent Cries and Hidden Tears, Veena Johari, 2002, Lawyer s Collective 2 Children on Brink 2004: A joint report of new orphan estimates and framework for action, UNAIDS, UNICEF, USAID

42 pedagogy that excludes and talks down to the child, and a health system which is inequitable and inaccessible to most people. It is the interplay of these varying factors that determines the intensity of impact on the child due to HIV/AIDS. The above situation calls for a multi-sectoral approach to address the needs of the children affected by HIV/AIDS that essentially means coordination between various ministries responsible for fulfilling the basic rights of the child. These include MHRD, MWCD, MSJE and MOHFW. According to estimates, there are approximately 35 million orphans in India, due to all causes, with an orphan being defined as a child under age 18 who has lost one or both parents 3. Definition of orphans as stated in Juvenile Justice Rules (Sec 2[m]) is orphan for the purpose of adoption under Section 41 of the Act means a child who is without parents or willing and capable legal/natural guardian. The state of orphan hood is recognized only when the child loses both the parents but even among the majority of the populations (70% rural) the extended family system still persists and the children who may end up losing their parent/s eventually get absorbed in these family care units. Majority (85%) of the children who end up in alternative care systems like institutions or adoption are children who have parents but have been abandoned due to stigma attached to the cause of birth, chronic disease or the lack of capacity among the parents to take care of their children. On the basis of evidence from the experience of the NGOs working with affected communities and the outcome of the qualitative research conducted by UNICEF in six high prevalence states it is apparent that one of the key issues faced by the affected communities is the stigma linked with the disease. UNICEF commissioned series of qualitative studies to investigate barriers to services for children with HIV-positive parents in each of the six high-prevalence states which provides clear evidence that affected children are often mistreated or excluded from schools, medical centres and anganwadi services, and by their own relatives and neighbours. The study also found that many service providers were not aware of this exclusion, and were unsure what to do to overcome these barriers. Lessons learnt from limited programming in India Experience on providing protection and care for children affected by AIDS is relativley 3 ibid 2 38

43 Protection and care for children affected by HIV/AIDS new and is innovative in nature. The leading agencies implementing programmes working in this area for children are Family Health International and India HIV/AIDS Alliance in partnership with a number of NGO partners. The other key agencies include Save the Children UK and Plan India ( partner of Alliance) which are INGOs working on child rights and child protection programmes. In addition there are Indian organisations like CRY (Child Relief and You),which is a strong advocate for child rights. Taking cue from the Global Framework for Orphan and Vulnerable Children the stress in programme have been on a community based approach of strengthening capacities of the family members, social mobilization to overcome stigma and ensuring access to services for all affected children and families. The community initiatives included comprehensive HIV prevention for adolescents, care and support services including life skills education, non institutional care, psychosocial support, medical care, referral and linkages to VCT and ART centers, linkages to education support, vocational training, legal and economic support. These services have been provided for children from affected families, which include the ones with positive parents, or who may lost a parent/s to AIDS and children living with HIV/AIDS. The community based interventions engaging members from the clusters to participate and identify the neediest families and creating a more enabling environment for the affected families have been able to make these programme successful to a large extend. The targeted approach of providing families with financial support and food supplements have been found to be beneficial in the short term but the sustainability of these programme have been a matter of concern for these organisations. The programme implemented so far have identified care and support as composing the following components 4 Care includes referrals to health service providers, prophylaxis, & treatment of opportunistic infections, promoting access to ARV & treatment literacy, palliative care. And Support includes establishment & capacity building of self help groups, support for livelihood options, psychosocial support through counseling services & support groups, nutrition support, education support, peer education, addressing stigma & discrimination, advocacy with community gatekeepers, healthcare providers. etc. They also have models of alternative care programme, especially foster care initiatives implemented in some of the programme wherein they provided incentives to families who adopted orphans from affected families. Another innovative programme that the Alliance has developed is creation of grain banks in the villages that could be accessed by the neediest families from the villages. The community members replenished the grain bank. 4 India HIV/AIDS Alliance 39

44 Family health International has also provided a comprehensive HIV prevention, care and support services including life skills education, home based care, medical care, psychosocial support, non-institutional care; referral and linkages to VCT and ART centers; linkages for education support; vocational training; legal; and economic support. FHI has been involved in advocating for policy and programme initiatives for children affected by HIV/AIDS. The organisation has developed India specific tools like Life Skills Toolkit; Protocols for child counseling on HIV testing, disclosure and support; Detoxification and rehabilitation protocol for substance using children and adolescents; child friendly communication materials for HIV/AIDS prevention and awareness. Positive networks like Positive Women s Network and INP+ have been engaged in advocating for their rights and adoption and implementation of the HIV/AIDS Bill, which will have a major role to play in addressing cases of discrimination and violation of rights of affected children and their families. Creating platforms for children to raise their voices to express their opinions on the situation of the affected children was able to bring out various aspects that the elders may not have identified or comprehended. This was a good advocacy initiative by the positive network to influence the government policy on HIV and AIDS. Naz Foundation and FXB India has been engaged in providing community based (home based) care and support for the children on a modest scale and also running a childcare institution or care centers for infected and affected children with good referral services to pediatric AIDS centers. 40

45 Protection and care for children affected by HIV/AIDS Coverage Number of beneficiaries under various programmes run by some of the key NGOs: Organisation Target beneficiaries States India HIV/AIDS Alliance 16,971 children affected by HIV /AIDS Tamilnadu, Andhra Pradesh, and Delhi 15,252 People living with HIV/AIDS 21, 467 family members affected by HIV /AIDS Proposed GFATM programme (4 years) Family Health International Proposed programme (5 yeas) Family Health International children affected by HIV/AIDS children affected by HIV/AIDS; 3000 children in Delhi adults and children affected by HIV/AIDS children affected by HIV/AIDS; 3000 children in Delhi 40 districts with 59 NGOs. Tamil Nadu, Andhra Pradesh, Maharashtra and Manipur. Maharashtra, Tamilnadu, Andhra Pradesh, Nagaland and Manipur & Delhi (41 NGO partners) 11 districts of A.P. Maharashtra, Tamilnadu, Andhra Pradesh, Nagaland and Manipur & Delhi (41 NGO partners) Proposed programme (5 yeas) Naz Foundation (India) Trust (NGO) adults and children affected by HIV/AIDS Home for 34 children affected by HIV/ AIDS; home based care for 41 infected and 71 affected children 11 districts of A.P. FXB India Suraksha families Manipur, Mizoram, Nagaland, Arunachal Pradesh, Jammu, Rajasthan & Andhra Pradesh. Delhi Challenges and opportunities India has always followed a targeted approach towards addressing socio economic issues with respect to marginalized communities. The policies spell out welfare programme specifically meant for Scheduled Castes and Tribes, or the below poverty line families. The above situation will automatically generate an opinion in favor of creating programme, which tries to find the affected families and their children for support. This form of targeted interventions is also likely to enhance the stigma against these children especially in HIV low prevalence states/ clusters. There is need to advocate for and establish a universal approach for addressing this issue in a country with a large numbers of vulnerable children due to reasons beyond HIV/AIDS. The factor, which impeded a universal approach, is the vertical programming under all the ministries and donor policies. There has to be a change in perspective among the NGOs, Donors and Government 41

46 on the end goal of their development efforts to bring about change in this approach, and this calls for a coordinated effort. In order to rise from welfare programme to a demand driven service the quality and efficiency of these services needs to improve drastically. As long as this does not occur, there will be space for private agencies to provide substitute services of access to education, health, nutrition ad social protection services. Here lies a key role for NGOs and Donor agencies in supporting the Government to improve their standards of services. Although there is general agreement on a definition of children affected by HIV/ AIDS which includes infected children the apprehensions of missing out on the needs of an infected child is raised very often. The need here is to understand that an infected child will have the same social needs and services like a child who may not be infected, the only difference being the fact that the infected child may need early diagnosis, referral, treatment for the disease and follow up services unlike the uninfected. The care and support under this intervention is many a times interchangeably used to mean care and support related to treatment for a disease and care and support required for holistic development of the child which is covered by the child protection initiatives. In the context of HIV/AIDS this could be used interchangeably as an HIV positive child may require both care and support in relation to treatment and care and support under the protection services which includes providing a safe environment for growth, access to basic services and prevention & redresser services for violation of their rights. But for a child who may not be HIV positive and is from an affected family this service essentially means the child protection initiatives as defined above. Some of the opportunities at hand for the country, which can help towards realizing the goals, are the newly launched Integrated Child Protection Scheme by Ministry of Women and Child Development and Government s initiatives towards revamping the Integrated Child Development Services for children less than 6yrs, under the same Ministry. Key partners MWCD, NACO,MSJE,NRHM, UNICEF, India HIV/AIDS Alliance, Family Health International, Child Investment Fund Foundation, FXB and their partners. 42

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