Pediatric AIDS Initiatives (PAI) Introduction and background of Project:

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1 Pediatric AIDS Initiatives (PAI) Introduction and background of Project: This project is a part of one of the national HIV intervention program in which work done for Children living with HIV /AIDS (CLHA) where nothing much has happened for them. Due to the detrimental effects and strains the HIV virus inflicts on the health and well being of CLHAs, CLHAs have many additional needs. To manage and counter these effects, As per National AIDS control organisation guideline mandate the CLHAs regularly visit an ART centre to avail of the existing free diagnostic and treatment services and voluntary counseling. This project supported by Clinton foundation, Give India and USA and Gove India also given partial support for this program. Children of today are the youth of tomorrow.hiv affects this very precious generation and bear grave consequences to our future, our nation, the continent and the world at large. It will adversely impact the health statistics, economic growth and above all the morale of nations. Although children represented only 6% of all people infected with HIV/ AIDS as of December 2005, they accounted for 18% of the 3.1 million AIDS deaths in Only 40,000 or 4% of the one million people now on antiretroviral treatment are children. This means that one in every six AIDS deaths each year is a child, yet children represent less than one of every twenty-five persons getting treatment in developing countries today. India has an estimated 202,000 children infected by HIV/AIDS (UNAIDS 2004). Using a conservative vertical transmission rate of 30%, a new cohort of approximately 56,700 HIV infected infants, is added every year (NACO, 2005). As of Sept 2006, the programme has about 45,000 individuals on ART through public, private, and NGO supported ART centers (NACO 2006). There are 2,300 children, who are currently receiving ART in India (NACO Oct, 06), 87,323 children registered with ART and 2,781 children on ART in Maharashtra however; half of HIV-positive children die undiagnosed before their second birthday. The reasons for lack of access for treatment of children with HIV/AIDS are manifold and include among others, issues of diagnosis in infants (early diagnosis), lack of clear guidelines for the treatment of children, lack of access to appropriate pediatric ART formulations, inadequate capacity and knowledge of service providers in clinical management of Pediatrics HIV/AIDs, lack of surveillance and data in this age group (<15 years), nutrition in young infants, inadequate follow up of infants born to mothers from the PPTCT programme and other programmatic issues such as convergence with RCH services and the lack of a minimum package for care and support of children affected and infected with HIV. Enhancement of health care systems ability to address health needs of infected children, resulting in effective management of common childhood illnesses and prevention and treatment of opportunistic infections. Children have specific needs for growth and development, and of early diagnosis of infection besides needing a strong family support. Orphaned and vulnerable (OVC) children, both affected and infected add to the complexity of the issue in terms of vulnerability, social security, livelihood, poverty etc.

2 The main thrust areas of this report include the newborn component of PPTCT, follow up of the HIV-exposed infant, counseling mothers to decide the right infant feeding choices, PCP prophylaxis and appropriate diagnosis of infected children. Once HIV infection is confirmed and for the older children, who have contracted HIV through other routes, the areas of importance include correct diagnosis, 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 services. There is also a need to focus on adolescents and HIV, especially with regard to primary prevention of HIV amongst teens by providing them with the life skills, family life education and right messages on prevention of HIV. During implementing reproductive & child health and HIV /AIDS targeted intervention, and Pediatrics AIDS initiative Project from 2003, 217 children identified who have tested positive for HIV from 100 village of Aurangabad district and registered or receiving Anti-Retroviral Therapy (ART). 45 to 50 % of these children are orphans and others are with single or foster parents. The condition of these children is exceedingly pathetic. They are left out without any care and support. The close relatives are not ready to keep these children in their homes. The grandparents who are alive are usually extremely poor to take the necessary and special care of the grand children. Travelling to ART centre every month is also a big predicament, as villages do not have road access. Also the travel costs are high as the villages from the ART centre are at a minimum distance of 70 kms radius. Due to this, visiting ART centre has become a difficult task for the guardians or grandparents to take the children for ART or OI treatment. Also sometimes due to the limitations of ART Clinic timings they have to spend on overnight stay. Irregularity makes adherence to ART and subsequently resistance to treatment will predictably complicate the issues. As the family members and relatives are not able to support, these children feel insecure, neglected, and fall prey to more infection and weakness, which ultimately leads to premature mortality. At present, we are providing 100-gram nutrition per day and travel support to 102 children with the donations of individual philanthropists. Now MGVS are constructed the 7,000 sq feet building for HIV+ve orphan and Community health center at Karanjgaon Village on (Nagpur-Mumbai Highway) Tal. Vaijapur, dist. Aurangabad. As a permanent shelter (Residential care and support) for the orphan children and community health center for rural poor. Objective of Project: To Provide comprehensive paediatrics care and treatment (ART) for 109 children Link 109 children to Aurangabad ART centres for CD4 and ART Care and support is being given through MGVS and treatment through ART centre Care includes: Psychological support, Nutrition and travel support To provide counselling to children s parent and care taker for supportive environment Target Group: Children from 1 to 18 year old

3 Project area: Vaijapur,Gangapur,Kannad, paithan, Khultabad, Sillod, Kannad and Kannad Talukas of Aurangabad District Support provided under project to beneficiaries: Psychological Support: Aimed at delivering counseling in an open and child-friendly atmosphere, this type of support ensures that an infected child and caregiver understands his or her health situation as appropriate for age and, as a result, is empowered to live a healthy life. Outreach workers (ORWs) or field satff made regular visits to the CLHAs and their families at least once in a month to emphasize the value of healthy leaving and ART adherence. ORW was made a minimum of one visit per month, visit should be a mandatory home visit per month for all the children or an accompanied visit to the ART centre. 1. ORWs were spending a minimum of one hour at each home during the home visits and educate and /or counsel the child or the care giver on the following topics: Adherence to ART drugs or OI prophylaxis and the importance of follow up visits to hospital About HIV/AIDS, OIs/Symptoms Provide referrals, if needed Living positively Basics of nutrition (Defining an appropriate diet, the preparation of a proper diet using locally available resources) Basics of health, hygiene and sanitation Formation of support groups and conduct support group meetings, if possible. 2. Monitors and records the growth indicators of the CLHA on a monthly basis 3. ORWs were filling in one M & E form per CLHA per month and enter the dates of the home visits in the M & E form. 4. Ensured that all the CLHA on ART and/or Cotrimoxazole adhere to treatment/prophylaxis 5. Ensured that all children saw a professional counselor at the ART centre and refer all cases which present with a new or severe health problems (e.g. fever, rash, diarrhea, productive cough or pain such as headache, ear pain, abdominal pain, or leg pain) to nearby primary 6. Health centre/district Hospital/community care centre or ART centre and maintain a record of the same. 7. Ensure that all children had their CD4 test at least once in 6 months. ORW was maintaining copies of government ART centre CD4 reports and car and support program consent forms at the IP.

4 PLHIV children were not going to ART centre because of unawareness regarding HIV/AIDS so the ORW counsel to them on HIV/AIDS and educate on treatment like ART, regular check up and CD4 count of them. ORWs meet to the parents and relatives of CLHA to make them understand what the HIV/AIDS in actual and remove their misconceptions. In addition, care and support is the main part of this job. ORW when meet to the parents of children they gave them an idea how to take care of their child and how can they make their child happy. Travel Support: Because the distance to the closest government ART centre can be significant, funds were provided to subsidize the transportation costs for 109 children in the care and support program. Modes of travel support: 1. CLHA and one parent/caregiver go to ART centre and got reimbursed on actual up to the travel limit 2. ORW was accompanied the child to the centre with on actual up to the travel limit 3. Group of CLHA in an IP/IP-rented vehicle/public transport with supporting documents and within the travel limit. We provide travel support to the 109 child and his / her parents for coming to ART centre monthly and for taking the nutrition from office. Those who were orphan and semi orphan we linked them or given them admission in Sai Bahuuddeshiya Sewabhavi Sanstha, Dharmavir Raje HIV/AIDS Balgruh, Aurangabad. It was helpful to them that they stay at district place and easily can get treatment. Nutritional Supplementation: Under this we provide rice, groundnut, Matoo and Jiggery to the beneficiary also sometimes we gave them Mooing, Rajgira ladoo. For this, the beneficiary came to office and gets the proper service. We linked them at Anganwadi and pre primary school or shelter home for middy milk or full nutritional support. Overall activities done under project: First identify and mobilize CLHA and took their personal details and history Sensitize on HIV/AIDS-address stigma and discrimination. Through Home visits educate communities on HIV/AIDS, OIs, Positive living and others Counselling for communities, families and individuals. Motivate for voluntary testing and support in testing process. Get their CD4 and other test done at the ART centre.

5 After that those who require ART (Having less CD4 Count) get start their ART from ART centre. Follow up all the children at least once in a week, especially to those who are under ART and have to come on a monthly basis to collect their medicines. Those CLHAs not on ART also to be followed up for repeat test in six months time or as advised by the doctor. Ensure treatment adherence and make linkages to different services. Monitoring of CLHA health status like OIs, side effects of ART and others. Delivering and monitoring nutrition supplementation, providing nutrition that is high in protein, low in cost and locally available, distribution mechanism-ensure easy access to CLHAs and ensure proper documentation (Maintenance of register, etc.), Funds should be spent on travel support for each child Facilitate monthly visits to the ART centre for children on ART, facilitate monthly/quarterly visits for children not on ART Outcome: After the intervention the parents are paying their attention on children health Regular visit to ART centre Linkages with Mata Bal-Sangopan Yojana & Sanjay Gandhi Niradhar Yojana are the most important thing because they get the financial support from these government schemes. We took the admission of 102 children in the school of CLHA now they are alone going to school for the welfare of their life Every month parents and child came for the nutrition in office. Now the parents gave the attention on the health status of their child also on other infections 100 % orphan and needy child linked to shelter home Groups meet with guardian, parents and children & residential facility