HIV Infected and Affected Children in Delhi A Status Report

Delhi Commission for Protection of Child Rights Delhi Commission for Protection of Child Rights 5th Floor, IBST Building, Kashmere Gate, Delhi-110006 5th Floor, IBST Building, Kashmere Gate, Delhi-110006 Tel. ; 011-23862686, Fax: 011-23862684, E-mail: [email protected] Tel. ; 011-23862686, Fax: 011-23862684, E-mail: [email protected] HIV Infected and Affected CHILDREN IN DELHI

A Status Report

Delhi Commission for Protection of Child Rights November 2014 Foreword 5 CHAPTER I Definitions 7 CHAPTER II Introduction 9 CHAPTER III The Status of HIV in Delhi 14 Delhi State AIDS Control Society (DSACS) 21 Children Affected by AIDS (CABA) Pilot Scheme 24 < * ) Financial Assistance to PLHA in Delhi 25 CHAPTER IV National Policies and Guidelines 28 The National AIDS Control Organisation (NACO) 28 H HIV/AIDS Bill 2007 29 India's Commitment to Child Rights 30 Constitutional Provisions 30 z National Plan of Action for Children, 2005 31 w Policy Framework for Children and AIDS, July 2007 33 Integrated Child Protection Scheme (ICPS) 34 CHAPTER V Civil Society and NGO Initiatives 37 H CHAPTER VI Conclusion 41 Annexure 1 List of Abbreviations 43 Annexure 2 Global Perspective 46 z Annexure 3 Write up of the Plan Scheme for Financial Assistance to PLHAs 49 Annexure 4 Orphan & Vulnerable Children Infected or o Affected by HIV/AIDS in Delhi 53 Annexure 5 NACP I to IV 63 u Annexure 6 Operational Guidelines for Care & Support Centres, December 2013 68 Annexure 7 Government Schemes and Programmes 73 Annexure 8 Parliamentary Interventions 75 Annexure 9 Court Pronouncement and HIV 76 Annexure 10 Measures by International Organisations 81 Annexure 11 Media Reporting 84 FOREWORD

HIV/AIDS has emerged as a major issue affecting children in our society. Children infected and affected by HIV face a lot of apathy and are one of the most vulnerable sections of our society. Children affected by HIV/AIDS include a relatively small number of children who are HIV-positive and a far larger number who are not infected but whose parents are living with, or have died of AIDS. In addition, there is an even larger group of adolescents who are at a heightened risk of HIV infection because they engage in unsafe behaviour or live in communities which are vulnerable to HIV. A 2012 Delhi State Aids Control Society (DSACS) study estimates that the total number of Orphan and Vulnerable Children (OVC) in Delhi was 1,908, of which 766 were infected with HIV and 1,142 were affected by HIV/AIDS. The data was gathered during the period April 2010-March 2012 from nine antiretroviral treatment centres, Children Affected by AIDS (CABA) pilot scheme, and two institutions providing residential care to CABA in Delhi. Being HIV positive, children face rejection within their own families, schools, medical care facilities and are ostracised by society at large. They are stigmatized and face a lot of discrimination as well as abuse. People are scared to come in contact with them and take care of their basic needs. Families refuse to share living spaces, utensils, clothes, toilets with HIV positive children in the household. Media has been constantly reporting on how children are forced to leave schools given their status. At times, other parents withdraw their children leading to pressure on these children to drop out of educational institutions. Even health care providers, despite their sensitisation, refuse to take care of HIV positive patients. Pregnant women are not attended to leading to transmission of the infection to the child. Surgeries are not performed on HIV positive individuals. Children are also pulled out of school to take care of their ailing parents. In the absence of parents, they are forced to become breadwinners of the family, having already suffered the trauma of the death of their near and dear ones. Malnourished, living with opportunistic infections, lack of access to treatment often leads to early death. Most often they lose their property and inheritance rights and are subjected to abuse and exploitation. In other words, HIV/AIDS compromises children's right to survival, protection, participation and development. It cuts short their childhood. Over the years, with improvement in testing facilities, medical intervention, free roll out of paediatric ART (antiretroviral therapy), and increase in awareness, their life span has enhanced and we need to ensure they have access to care and protection like any other child in this country. ART has transformed AIDS from a terminal illness to a treatable chronic condition. The objective of this study is to understand the status of HIV infected and affected children in the Capital city of Delhi which has been categorised as a "highly vulnerable but low prevalence" city. It also looks at the global and national context, the various interventions and initiatives at CHAPTER different levels and the schemes and programmes which can be accessed by these children in difficult circumstances. This status report on HIV and children began with a desk review of the available material on HIV Definitions as well as children's rights in the context of their positive status. This included policy documents, various guidelines laid down by the Government of India, reports related to children and their rights and laws, and reports of various donor agencies.Reports by experts in this field as well as of NGOs working in different parts of the country were studied to understand the programmes, Child: The Juvenile Justice (Care and Protection) Act 2000 defines children as persons below 18 schemes and initiatives and their impact on the children infected and affected by HIV. Media years of age. The UN Convention on Child Rights defines children as human beings below the age reports related to HIV and children were scanned to understand the debate and discussion on the of 18 years. issue within the media. Vulnerable children: As per the Sub Group Report on Child Protection for the Eleventh Five Year Govt departments working at the national (NACO) and Delhi level (DSACS) as well as NGOs Plan by the MWCD, some children are more vulnerable in terms of the harm/ danger/ risk to working in Delhi were contacted for their perspective on this issue. DCPCR appreciates the their survival/ development and participation than others. These children in difficult support from the Delhi State AIDS Control Society in providing relevant data and information. circumstances fall into the following groups: We are grateful to the various organisations - CHELSEA, Nai Umang, NIPCCD, who contributed a. Homeless children (pavement dwellers, displaced/ evicted etc) to the study and provided relevant data and reports. The Commission acknowledges the Refugee and migrant children contribution of Members Mr. Shashank Shekhar and Mr. M. M. Vidyarthi as well as b. Ms. Anuradha Mukherjee, Consultant, for putting together all inputs for this status report. c. Orphaned or abandoned and destitute children d. Children whose parents cannot or are not able to take care of them e. Street and working children f. Child beggars II g. Victims of child marriage (Aran Mathur) h. Trafficked children Chairperson i. Child sex workers DCPCR j. Children of sex workers November 2014 k. Children of prisoners l. Children affected by conflict/civil strife m. Children affected by disasters both natural and manmade n. Children affected by substance abuse, HIV/AIDS and other terminal illness o. Disabled children p. Children belonging to ethnic, religious minorities and other socially marginalised groups q. Girl child r. Children in conflict with law and s. Children who are victims of crime. In the context of HIV/AIDS, vulnerable children are those children who are in such circumstances that their risk of HIV infection is high. For instance children on the streets, orphans, children of sex workers, child labour, child sex workers and trafficked children.

7 HIV affected child: A child who a. Has a family member living with HIV/AIDS CHAPTER b. One or both parents living with HIV/AIDS c. Has lost a parent or significant guardian or care provider due to AIDS Introduction d. Is orphaned by HIV/AIDS e. Is living with HIV/AIDS An HIV infected child is defined as a child living with HIV/AIDS. It is a sub-set under affected child. In India, the first case of HIV or Human Immuno-deficiency Virus was reported in 1986 in Orphan: A child under the age of 18 years who has lost one or both parents Chennai, in the Southern state of Tamil Nadu, among commercial sex workers. The second case was reported among intravenous drug users in the Eastern state of Manipur. Once perceived as an infection restricted to high risk groups (HRG) like truck drivers, commercial sex workers, homosexual men and intravenous drug users, it has percolated to the general population and from the urban to the rural areas. Despite various efforts at the national and state level, the disease continues to be a cause for concern in the country. There are four modes of transmission of HIV 1. Through contaminated blood 2. Through unprotected sexual contact with an infected person 3. Use of contaminated needles and syringes 4. From infected parent to child In the Indian context, most of the people have been infected through heterosexual contact, i.e. 87.4 percent of the cases, as indicated in the graph below. Parent to child transmission contributed to 5.4 percent of the cases in the country. This is quite high considering that interventions at the appropriate time can significantly bring down the chances of transmission of the virus from parent to child.

Children born to HIV positive women can be infected with the virus during a. Pregnancy - At times the mother's infected blood crosses the placenta and enters into the baby's blood stream through the umbilical cord. The chances of the foetus getting infected

8 9 during this stage increases if the mother becomes infected with HIV during pregnancy or has A matter of concern in this area is that "out of an estimated 27 million pregnancies in a year in reproductive tract infections. This leads to high viral load in the pregnant women and India, only about 52.7% attend health services for skilled care during child birth. Of those who therefore increases the risk of transmission. availed health services, 8.83 million ANCs received HIV counselling and testing (March 2013) b. Delivery or labour - During delivery, the baby comes in contact with the mother's blood and out of which 12,551 pregnant women were detected to be HIV positive."4 vaginal secretions. The chances of cuts and tears on the baby's body are high during normal "To enhance this coverage, a joint directive from the National AIDS Control Programme (NACP) birth and these provide an entry point for the mother's infected blood to enter the child's and the National Rural Health Mission (NRHM) regarding convergence of the two programme blood stream. Research indicates that most children who get infected from their mothers components was issued in July 2010, explicitly stating that universal HIV screening should be acquire the virus during the birth process. included as an integral component of routine ANC check-up. The objective was to ensure that c. Through breastfeeding after birth - Breast milk has a high concentration of the virus and the pregnant women who are diagnosed with HIV would be linked to HIV services for their own child can get infected during breastfeeding. health as well as to ensure prevention of HIV transmission to newborn babies under the PPTCT The mother to child transmission rates can range between 15 to 45 percent. However with the programme." following interventions, it can be significantly reduced to less than two percent: Detection of HIV Infected Pregnant Women and Children under NACP a) Consistent ART therapy and regular testing of viral load during pregnancy to reduce viral In 2012-13, a total of 13,443 HIV infected women and 11,639 HIV infected children in the age load. group of 0 to 14 years were detected at the Integrated Counselling and Testing Centres across the b) ART during labour and birth to protect the child from getting infected. Administration of country. Interestingly about 86 percent of the cases were detected in 13 states as indicated in the single dose Nevirapine can prevent transmission of the virus to the child. table below. 5 c) Opting for caesarean birth to avoid contact with the infected mother's blood and vaginal S.N State No. o f HIV No. o f HIV S.N State No. o f HIV No. o f HIV Infected Infected Infected Infected secretions. Pregnant C hildren- Pregnant C hildren- W om en (01-14 Y rs) W om en (01-14 Yrs) d) ART to the newborn child. Detected Detected Detected Detected e) Formula feeding to ensure that the child does not get infected through breastfeeding. 1 Andhra Pradesh 2 8 1 0 1 9 2 6 19 A s s a m 117 7 8 2 Maharashtra 1 5 4 5 2 2 5 5 2 0 K e ra la 6 3 5 Adolescents are at risk of HIV infection from unprotected sex with multiple partners or with a 3 K a rn a ta k a 2 2 3 2 1 6 4 4 21 J h a rk h a n d 7 6 1 6 5 4 T a m il N a d u 7 4 9 3 8 7 2 2 Uttaranchal 51 5 6 partner who has multiple partners and through injecting drug use and blood transfusions. 5 G u ja ra t 701 5 7 3 2 3 C h a n d ig a rh 4 2 6 7 India has the third largest number of people living with HIV after South Africa and Nigeria. The 6 West Bengal 4 7 8 4 7 8 2 4 M e g h a la y a 5 7 14 7 Uttar Pradesh 4 4 5 9 1 2 2 5 Pondicherry 16 2 8 Southern states of Andhra Pradesh, Karnataka, Tamil Nadu and Maharashtra and the North 8 | R a ja s th a n 381 4 7 9 2 6 G o a 2 6 2 6 Eastern states of Manipur and Nagaland are high prevalence states. 9 D e lh i 3 3 8 371 2 7 Himachal Pradesh 3 2 5 8 10 B ih a r 2 4 8 6 1 3 2 8 Jammu & Kashmir 7 6 2 2 "HIV prevalence among adult population in India has declined consistently over last one decade 11 O d is h a 2 7 2 2 4 8 2 9 T rip u ra 2 0 10 from 0.4% in the year 2000 to 0.27% in 2011.This decline is made possible due to reduction in new 12 P u n ja b 2 7 5 1 9 7 3 0 Dadar & Nagar 5 2 H a v e li HIV infections among adults from about 2.7 lakh in the year 2000 to 1.17 lakh in 2011, a drop of 13 Madhya Pradesh 1 5 4 5 3 4 6 31 Daman and Diu 5 0 about 57%. This decline reflects impact of scaled-up HIV prevention interventions under the 14 Chhattisgarh 159 201 3 2 S ik k im 6 3 15 | H a ry a n a 2 4 4 2 3 0 3 3 Arunachal Pradesh 3 3 National AIDS Control Programme (NACP) during this period. On the contrary, reduction in 16 M a n ip u r 151 116 3 4 Andaman and 0 0 new HIV infections among children is only about 35% which indicates continued and high level Nicobar Islands 17 N a g a la n d 151 8 5 3 5 Lakshadweep Data not available of transmission of HIV from infected mothers to their children." 1 18 M iz o ra m 124 41 India Total 13,443 11,639 | A total of 1.42 lakh children (0 to14 years) are estimated to be living with HIV in India with about 14,000 new HIV infections annually.2 Mother-to-child-transmission of HIV is a major route of In Delhi, 338 HIV infected women and 371 HIV infected children in the age group 0 to 14 were HIV infection in children. As on March 20133, "0.1 million HIV positive children had been detected at the ICTC centres. registered under the antiretroviral therapy (ART) programme and 38,579 were receiving free Burden of AIDS related deaths among children 6 ART." The absolute numbers of deaths among children 0 to 14 years also shows a consistent decline, in "There has been a significant scale-up of HIV counselling and testing, Prevention of Parent-to- contrast to more than 10,000 AIDS deaths that continue to occur in India annually. It can be Child Transmission (PPTCT) and ART services across the country over last five years. Between inferred from the graph below that the proportion of deaths occurring among younger children 2004 and 2013, the number of pregnant women tested annually under the PPTCT programme (1-4 years) out of all childhood deaths have reduced considerably from 45% in the year 2000 to increased from 0.8 million to 8.83 million and reach of the services has expanded to the rural areas less than 28% in 2012. This is probably due to improvement in access to HIV detection services to a large extent." along with availability of ART services.

10 11 Trend of estimated number of new HIV infections among pregnant women and children along with trend of estimated AIDS deaths from 2000-2011, India

Source: NACO HIV estimations 2012 Enrolment of children living with HIV (CLHIV) into HIV care It is understood that about 15,000 children living with HIV are being enrolled for HIV care every year. The Pre-ART Registration figures are provided in the table below for the period 2009-14. Year Pre-ART Registration of CLHIV 2009-10 15,940 2010-11 20,328 2011-12 16,241 2012-13 15,123 2013-14 Data source ART/ till December 9,666 The Government of India is committed to work towards achievement of the global target of elimination of new HIV infections among children by 2015. Based on the new guidelines from WHO (June 2013), Department of AIDS Control has decided to provide life-long ART (triple drug regimen) for all pregnant and breast feeding women living with HIV, in which all pregnant women living with HIV receive a triple drug ART regimen regardless of CD4 count or WHO clinical stage, both for their own health and to prevent vertical HIV transmission from mother-to- child.7 The national PPTCT programme, in line with WHO standards for a comprehensive strategy, recognises the four elements integral to preventing HIV transmission among women and children. These are: 1. Primary prevention of HIV, especially among women of child bearing age. 2. Preventing unintended pregnancies among women living with HIV.

12 3. Prevent HIV transmission from pregnant women infected with HIV to their child. 4. Provide care, support and treatment to women living with HIV, her children and family in women in child bearing age.

The National Guidelines for PPTCT clearly outlines the components essential for an HIV Exposed Infant (HEI) • Exclusive breastfeeds up to 6 months (preferred Option-I WHO/NACO Guidelines 2010-11) and continued breastfeeds in addition to complementary feeds after 6 months up to 1 year for Early infant diagnosis (EID) negative babies and up to 2 years for EID positive babies who receive Paediatric ART. • Postpartum ARV prophylaxis for infant for minimum 6 weeks. • EID at 6 weeks of age; repeat testing at 6 months, 12 months & 6 weeks after cessation of breastfeeds. • Co-trimoxazole prophylaxis from 6 weeks of age. • HIV care and Pediatric ART for infants and children diagnosed as HIV positive through EID. • Growth and nutrition monitoring. • Immunizations and routine infant care. • Gradual weaning after 6 months and introduction of complementary feeds from six months onwards along with continuation of BF for at least one year for adequate growth & development of the child. • Confirmation of HIV status of all babies at 18 months using all three Antibody (Rapid) Tests. V______J There are 25 million orphans in India from all causes, of which approximately two million may be attributed to HIV/AIDS.1 234567 8 A global perspective on the epidemic is provided in Annexure 2.

1 National Strategic Plan Multi-Drug ARV for Prevention of Parent to Child Transmission (PPTCT) under National AIDS Control Programme in India, May, 2013 and Updated December, 2013 2 National Strategic Plan Multi-Drug ARV for Prevention of Parent to Child Transmission (PPTCT) under National AIDS Control Programme in India, May, 2013 and Updated December, 2013 3 Updated Guidelines for Prevention of Parent to Child Transmission (PPTCT) of HIV using Multi Drug Anti-retroviral Regimen in India, December, 2013 4 Updated Guidelines for Prevention of Parent to Child Transmission (PPTCT) of HIV using Multi Drug Anti-retroviral Regimen in India, December, 2013 5 National Strategic Plan Multi-Drug ARV for Prevention of Parent to Child Transmission (PPTCT) under National AIDS Control Programme in India, May, 2013 and Updated December, 2013 6 National Strategic Plan Multi-Drug ARV for Prevention of Parent to Child Transmission (PPTCT) under National AIDS Control Programme in India, May, 2013 and Updated December, 2013 7 Updated Guidelines for Prevention of Parent to Child Transmission (PPTCT) of HIV using Multi Drug Anti-retroviral Regimen in India, December, 2013 8 Anil K. Gupta, Nidhi Rawat, Kuldeep Rai, Surendra Rana & Sabyasachi Chakraborty (2012): Orphan and vulnerable children infected or affected by HIV/ AIDS in Delhi - situational analysis and state government's initiative of household economic strengthening, Vulnerable Children and Youth Studies: An international interdisciplinary Journal for Research, Policy and Care

13 CHAPTER The Status of HIV in Delhi

The 2011 Census indicated that the Capital city had a total population of 1,67,53,232. There were 41,01,091 children in the age group of 0 to 14 years. In the context of HIV, the city of Delhi has been categorised as "highly vulnerable but low prevalence" on the basis of vulnerability factors such as migration, size of the population and health infrastructure. The first case of HIV was detected in the year 1988. For district level planning and implementation of NACP-III in the country, NACO classified all the districts into four categories based on HIV prevalence among different population groups for three consecutive years (2004-2006)9. As per the definition of the four categories provided below, out of Delhi's nine districts, four districts are in Category B or Moderate while five are in Category C. Central, East, North and North East districts fall in Category B while North West, West, South, Southwest and New Delhi fall under Category C. Category A: More than 1 % ANC prevalence in district in any of the sites in the last 3 years. Category B: Less than 1% ANC prevalence in all the sites during last 3 years with more than 5% prevalence in any HRG site (STD/FSW/MSM/IDU). Category C: Less than 1 % ANC prevalence in all sites during last 3 years with less than 5 % in all HRG sites, with known hot spots (Migrants, truckers, large aggregation of factory workers, tourist etc). Category D: Less than 1 % ANC prevalence in all sites during last 3 years with less than 5 % in all HRG sites with no known hot spots or no or poor HIV data. As per the last HIV Sentinel Surveillance, while the North-Eastern states showed decline in HIV prevalence among drug users, newer pockets have emerged over the past few years. Delhi, Punjab, Chandigarh, Mumbai and Bihar have shown an increase in HIV prevalence among drug users. The Technical Report India HIV Estimates - 2012 indicates the rising trend of new infections in Delhi along with other low prevalence but high vulnerability states.10 It highlights the need to focus the HIV programmes to cater to the needs in these states. HIV Statistics in Delhi11 The estimated adult (15-49 years) HIV prevalence percentage in Delhi has increased from 0.18% in 2007 to 0.22 % in 2011. In terms of the estimated number of HIV infections among adults and children, there is a rise from 17,656 in 2007 to 25,161 in 2011. In terms of the age wise distribution of the HIV infections (total of 25,161), 3.48 % is among children in the age group 0 to 14 years, 88.79 % among 15 to 49 year olds and 7.73 % in the 50 plus age group.

14 <15 years 15-49 years 50+ years

Sneha Six year old Sneha12 lives in Burari in Delhi with her family. In 2009, her father Samir Singh was seriously ill and during the course of the medical investigations he was found to be HIV positive. He later died due to HIV-related illness. Subsequently Sneha, her mother Rekha and her two older siblings also got tested for HIV. Sneha and Rekha were diagnosed as HIV positive while the other two children tested negative. They got in touch with different NGOs in the city. Sneha's initial CD4 count was 405 but later came down to 205 and she had to be initiated on ART in August 2012. She also had tuberculosis and was put on medication for the same. The family was provided counselling, including nutrition and adherence counselling. Her mother, Rekha used to work but given her status and frequent visit to the hospitals, she had to often take leave. She could not continue working on a regular basis. The family of four had to depend on the grandfather who worked as a guard and had a regular source of income. The NGO provided the family monthly ration to ensure proper nutrition. Sneha's health improved a lot and by May 2013, her CD4 count rose to 1,021. She looked much healthier and happier. Her haemoglobin count was 10.3. The family was also counselled to educate the child and Sneha was enrolled in the local government school. Sneha's case highlights the present plight of children living with HIV in Delhi. Having lost one of her parents at an early age, the lack of resources and livelihood options, the family finds it difficult to get a square meal a day. With both the mother and daughter being positive, they not only need a balanced diet, but care and treatment to ensure a healthier future. Also while services and facilities have been provided by the govt and the non-govt sector, lack of information often hinders families from accessing them. In 2011, Delhi had an estimated 2,234 annual new infection among adults, an increase compared to the 1,902 new infections among adults in 2007. In terms of the annual AIDS-related deaths, the city witnessed a slight decrease from an estimated 440 deaths in 2007 to 432 in 2011.

15 Over the years there has been an increase in the number of mothers needing PPTCT in Delhi, from an estimated 339 in 2007 to 441 in 2011.

2011

Annua] new infedionannjRjj AIDSreljteddeaths adults Mothers needing PPTCT

HIV Trend in Delhi The coverage of mother-baby pairs receiving Nevirapine has also increased from 2003 to 2011 as indicated in the graph below. As mentioned earlier, Nevirapine has been extremely effective in decreasing the risk of mother to child transmission.

250 230 220 205 200

150

100

50

Delhi 2003 ■ 2004 2005 2006 2007 2008 2009 2010 2011

Coverage of Mother-Baby Pairs Receiving Single-dose Nevirapine, 2003-2011 The HIV Sentinel Surveillance data indicated that the estimated need for ART in children in the age group of 0 to 14 years in Delhi has increased from 314 in 2007 to 787 in 2011 as indicated in the graph below.

16 • I0P7 ■zooe : p

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j o o a So- of jdu! M ind on ART 1

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Suresh, 12 years, Delhi Suresh was referred to an NGO by the counsellor of Safdarjang Hospital. A home visit revealed that both his parents had passed away in 2011 and he was living with his paternal uncle and aunt. However the family was unaware of the status of his parents. The 12 year old used to fall ill frequently and during tests conducted at the hospital, he was found to be positive in 2012. His first CD4 count in July 2012 was 45 and he was immediately started on ART. He had a skin infection. Though Suresh was part of a large joint family, only one of his uncles was taking care of him. He had monetary constraints and was unable to take care of the child's nutrition and medical expenses. The NGO counsellor ensured his OI was treated and provided him monthly ration. The child and his family were provided ARV adherence counselling and nutritional counselling. With proper diet and regular medication, his health has shown significant improvement.

17 State/UT wise number of HIV/AIDS Treatment Centers in India (December, 2013)13 Total ART and Link ART centres -1,278 As per the map above Delhi has nine ART centres. Antiretroviral Therapy (ART) in Delhi The nine ART centers in Delhi are spread across the different districts in the city as shown in the map below: BSAH: Baba Saheb Ambedkar Hospital DDUH: Deen Dayal Upadhyay Hospital GTBH: Guru Teg Bahadur Hospital LNH: Lok Nayak Hospital KSCH: Kalawati Saran Children's Hospital RMLH: Ram Manohar Lohia Hospital AIIMS: All India Institute of Medical Sciences SJH: Safdarjung Hospital LRS: Lala Ram Swaroop TB Hospital

18 The objective of the ART Centres as per DSACS is to provide comprehensive package of services to eligible persons with HIV/ AIDS. This includes: • Identify eligible persons with HIV/ AIDS requiring ART through laboratory services (HIV testing, CD4 Count and other required investigations to rule out/detect any underlying OI). • Provide free ARV and OI drugs to eligible persons with HIV/AIDS continuously with provision of counseling services before and during treatment for ensuring drug adherence. • Educate persons and escorts on nutritional requirements. Hygiene and measures to prevent transmission of infection. • Refer patients requiring specialised services or admission. • Provide condoms. In terms of the functions, ART centres have medical, psychological and social functions. In terms of its medical function, ART centres are involved in the diagnosis and treatment of OI, screening PLHAs for eligibility to initiate ART, monitoring patients on the regime and managing its side effects. They provide in-patient care, when required; facilitate linkages between service providers and specialist's care. ART centres provide psychological support to PLHAs, provide counselling for drug adherence, educate about proper nutrition as well as advise on risk reduction behaviour. As part of their social function, they facilitate PLHA to access government and NGO resources, besides linkages with other service providers for educational help for children and livelihood programmes. During the initial phase of the National AIDS Control Programme, it was realised by the Delhi State AIDS Control Society that there were several weaknesses in the ART services in Delhi14. These included a. Lost to follow-up problem. b. Poor reporting of OIs and non-availability of many OI drugs. c. CD4 testing was not available in all the ART centres (linked service) leading to delay in the delivery of reports to the clients. d. There was no financial assistance to PLHAs for child education and improving nutritional status. e. Poor linkage with the Community Care Centres. f. There was low institutional delivery rate of HIV positive ANC cases, so the data on ARV prophylaxis for non-institutional positive deliveries was not available. To ensure better facilities for PLHAs in the city, DSACS took various measures: 1. Tracking of the patients lost to follow up through phone calls or home visits to ensure reduction in chances of drug resistance among those who miss their ART visits. 2. Link ART centres were opened in places where services of doctor, nurse, counsellor and pharmacist was available, including ICTC in government hospitals and CCC in NGOs. These included ICTC in Central Jail, Tihar; RBTB Hospital; Malviya Nagar Hospital; Chacha Nehru Bal Chikitsalya and NGO Child Survival India in Burari and Khera Khurd. 3. DSACS provided OI drugs to all ART centres during 2008-09 and for 2009-10, it released Rs. 50,000 to all the nine ART centres to procure OI medication.

19 4. Community Care Centres run by Ashraya, CHELSEA, Child Survival India, BPS Care Home, Deepti Foundation, Aradhya, Michael Sahara, Love Faith Society and Naz Foundation (India) Trust were linked to the ART centres. The CCCs provided treatment for minor OI and psychosocial support through sustained counselling. They functioned as bridge between the hospitals and home care. With the introduction of the ART, the CCCs started playing a critical role by providing holistic care to PLHAs through monitoring, follow-up, counselling, drug adherence and nutritional counselling. A11 patients initiated on ART were required to be admitted to these CCC for a minimum of five days inpatient care. They could also refer HIV positive pregnant women to PPTCTC, for paediatric HIV services, ART centres for CD4 and other tests and DOTS for TB treatment. 5. Financial assistance scheme for PLHA, including HIV infected and affected children. MITWA or Mobile Integrated Testing and Wellness Access vans MITWA is DSACS's unique and ambitious pilot project to provide HIV/ AIDS counselling, testing, syndromic management of STD along with general medicines through mobile vans in various slums and jhuggi jhopri (JJ) clusters in Delhi. DSACS's objective in initiating MITWA vans was to create HIV/ AIDS awareness among

people residing in the urban slums and resettlement colonies as well as providing counselling and testing facilities at the doorsteps of the vulnerable people. Providing comprehensive general health services by integrating STD/RTI syndromic management and provision of free condoms to the high risk population were also part of the initiative.

20 State / UT wise number of HIV Counseling and Testing Centers (ICTCs) in India (December, 2013)15 Total-15,539 Delhi State AIDS Control Society (DS ACS) The Delhi State AIDS Control Society is an autonomous body of Delhi Govt. Functional from 1st November 1998, the nodal agency is responsible for implementing the National AIDS Control Programme funded by the Govt, of India. The main objective of the society is to prevent and control HIV transmission and to strengthen state capacity to respond to long-term challenges posed by the epidemic. Its various components are implemented through different departments and institutes, both government and NGOs16.

21 The Government of the National Capital Territory of Delhi constituted the Delhi State AIDS Council to facilitate a strong multi-sectoral response to combat HIV/ AIDS effectively in Delhi by mainstreaming HIV/ AIDS interventions in various sectors. The Council is headed by the Chief Minister and includes the Ministers for Health and Social Welfare, Finance, Education and Tourism, Industry, Food and Civil Supplies, Transport. It also includes the Chief Secretary and Principal Secretary (H&FW), besides representatives from international agencies ILO, UNDP; corporate bodies like CII, FICCI; media; NGOs; medical professionals, police and positive networks among others. Organisational Structure of DSACS

22 A total of 2,464 HIV positive children are enrolled in these ART centres with around 1,597 boys and 867 girls, which is 5.9 percent of the total number of individuals registered at these centres. The national figures of children enrolled for ART is less than 7 percent. As per the new protocol being followed in the country, all children living with HIV below the age of two years are to be put on ARV, he said. In 2010, the National Commission for Protection of Child Rights (NCPCR) had organised a public hearing for positive children across the country and brought together children living with HIV, their families, NGOs and SACS. Five children were referred to DSACS for follow up regarding procuring BPL cards and other issues. Describing this as "the tip of the iceberg", the State AIDS Control Society decided to take measures for care and support for positive children. The DSACS team visited various organisations in the NCR to identify the specific needs of this segment and linkages were created with ICDS. However he feels there is still a wide gap in accessing non-HIV services, like old age pension for grandparents of orphaned children or free travel passes. As a paediatrician, he tried to ensure that DSACS proposals were child centred. The financial assistance scheme was initiated for double orphans, both infected and affected. A total of 60 children were enrolled with 25 infected and 35 affected being provided Rs. 2,050 and Rs. 1,750 per month respectively. According to Dr. Gupta, Delhi is the only state which provides free blood transfusion and investigations like MRI, CT scan and blood test for positive people. For blood transfusion, no processing fee or replacement is required. These social protection measures are exclusively for the Capital city. Regarding education, Dr. Gupta mentioned that there were often queries regarding a positive child getting hurt and bleeding in the school and the chances of infecting another child. A WHO article emphasizing that there was negligible risk in such circumstances was circulated to the schools to ensure that CLHA were not denied admission or discriminated against. On the new initiatives, he elaborated that DSACS had trained 6,000 anganwadi workers in Delhi to sensitise them to the issues of positive children and include them in the nutritional programmes, without disclosing their status. Medical professionals had been trained on rationale blood transfusion and NAT (Nucleic Acid Amplification Testing), which had been approved by the Delhi Govt. ART centres were providing comprehensive care, including nutritional counselling. The revised PPTCT guidelines on multi-drug regime would decrease the present risk of parent to child HIV transmission from 20 to 45% to less than 5%. While earlier the mother could breastfeed the newborn for six months, now it could continue for a year. As for the lacunae in the context of CLHA, Dr. Gupta mentioned the need to focus on community based care for these children. He felt institutional care was also required in some cases but the quality of institutional care required improvement. Infected and affected families should have BPL cards while for children shelter was an important aspect as they face stigma and often denied a safe space. He recommended the need to revise the criteria for the financial assistance to scale up the scheme for children.

23 Government Schemes in Delhi for Children Infected and Affected by HIV Children Affected by AIDS (CAB A) Pilot Scheme The National AIDS Control Organization, Government of India, started focusing on orphan and vulnerable children (OVC) through Children Affected by AIDS (CABA) Pilot Scheme in 10 districts of the country, including one district of Delhi. Subsequent to the launch of the Policy Framework for Children and AIDS, NACO and Task Force Agencies for CABA considered a multi-sectoral mainstreaming approach for implementation of the operational guidelines for children affected by HIV/AIDS. It was proposed that a pilot scheme be implemented across 10 districts with the highest burden of PLHA in the country.18 These included North East Delhi; East Godavari and Krishna in Andhra Pradesh; Belgaum and Bagalkot in Karnataka; Nagpur and Sangli in Maharashtra; Salem and Madurai in Tamil Nadu and Imphal in the North Eastern state of Manipur. The scheme was implemented as a district level project with interventions to ensure that all children exposed to and affected by HIV/ AIDS are identified and linked to early diagnosis and treatment services, along with development, protection and welfare services on a need basis. In North East Delhi, WAG...CHELSEA (Women's Action Group for Children, Health, Education, Ladies, Senior citizens, Environment and Awareness) was involved in the CABA Pilot Scheme. Established in 1992, the organisation has been providing a package of services to marginalized children and their guardians with a holistic approach to community development at grassroots level. Over the years, Chelsea had various programmes to take care of children infected and affected by HIV. It had a ten bedded Community Care Center (CCC) to provide institutional care for HIV positive people. Its outreach programmes addressed issues of general health, sexually transmitted infections, HIV and AIDS. The Vulnerable Children's Programme took care of children living in difficult circumstances, providing education, medical care, nutrition, psycho social support and recreation. Presently the organisation has a PPTCT programme with 15 govt hospitals in Delhi covered under the public-private partnership. According to the Project Manager, the CABA scheme worked very well on the ground with all govt departments getting involved. There was monthly reporting to the DM (District Magistrate) and it helped in the following ways: 1. Actual data was collected from the ART centres. 2. Monthly meetings of the Delhi Health Society were organised to review the progress of the scheme, ensure children got admitted to schools and there was no discrimination against them. 3. State OVC Forum was initiated by the PD and APD, DSACS. Unfortunately the Forum has not been active in the recent months. The organisation felt the three priority areas for CLHA were: a. Need for support till they become independent or they are in a position to earn their livelihood and support themselves. b. Education, specially encourage those who are good in studies. c. Shelter - Foster care was an option for double orphans living with HIV.

24 Financial Assistance to PLHA in Delhi People living with HIV require lifelong care, treatment and support. They need ARV to prevent frequent opportunistic infection, proper nutrition, and at times have no livelihood to support their daily sustenance. It is all the more difficult for double orphan children infected and affected by HIV. They face stigma and discrimination in society and even in their own families. Similar is the case of positive children in institutional care. Most of them are orphaned or abandoned and left to die. They are malnourished and have undergone trauma at a young age. Being at a vulnerable age, they are unable to take care of their basic needs. The CABA Pilot Scheme in the North East district could link few OVC with the existing govt welfare schemes due to lack of essential documents. DSACS planned a special financial assistance scheme for PLHA to retain CABA in home-based care. The aims and objectives of the financial assistance scheme were: • Increasing access to Anti Retroviral Treatment by providing cost of transportation to access ART. This would help achieve >95% drug adherence and prevent emergence of drug resistance and need for costly second line treatment. • Improving nutritional status and physical capacity of the person to earn livelihood • Help orphan children in accessing anti retroviral treatment, treatment of other infections that they are at risk, nutritional support, education and skill building. As for the eligibility, PLHA on minimum one year ART, resident of Delhi for last three years and with an annual family income less than Rs. 1 lakh, were provided financial assistance. For double orphans infected and affected by HIV/ AIDS, both parents should have died and at least one due to HIV. Proof of parent's death due to HIV and that of the child being infected were required to make them eligible for this financial assistance scheme. For destitute children living with HIV in institutional care, the proof of the child being positive, and living in an institution located in Delhi were required. Rs. 1,000 per month is being provided to PLHAs, including infected children. For double orphans and destitute children living with HIV, the monthly support is Rs. 2,050 which includes nutritional support, transportation cost for availing medical services besides skill building and livelihood support. Double orphan children affected by HIV are provided a financial support of Rs. 1,750 per month. In the first six months, 6.8% PLHA, 11.7% CLHA, 9% double orphan children infected with HIV/AIDS, 9% double orphan children affected by HIV/AIDS, and 68% destitute children infected with HIV/ AIDS received benefit of the scheme. To maximize impact, efforts are being made to develop linkages of cash transfer households with other social service providers. Progress of Financial Assistance Scheme of Delhi Govt for People Living with FtlV/AIDS and Orphan Children Infected or Affected byHIV/AIDS, 201319 Category Total enrolled for scheme Deaths Stop payment PLHA on ART 1,267 14 14 Orphan children affected by HIV/ AIDS 4 Nil 1 (>18 yrs) Orphan HIV positive children 12 Nil Nil Destitute HIV positive children 17 1 1

25 DSACS received Rs. 125 lakhs in 2012-13 and Rs. 50 lakhs in 2013-14, amounting to a total of Rs. 175 lakhs to provide financial assistance to those infected and affected by HIV. Rs. 90.87 lakhs was released in 2012-13 while Rs. 74.21 lakhs was released during the financial year 2013-14 till the end of 2013. As per Delhi Government's Budget Highlights 2012-13, "Government has decided to give financial assistance of Rs. 1,000 per month to poor persons suffering from HIV/ AIDS for antiretroviral treatment. Orphaned children infected with HIV/AIDS will be given Rs. 2,050 per month and those affected by HIV/ AIDS Rs. 1,750 per month." The budget earmarked an initial corpus of Rs 5 crore for the health scheme. This scheme was among the key highlights of Delhi government's budget for 2012-13 in the health sector, for which Rs 2,124 crore (14,16 % of the total outlay) had been allocated.______A detailed write up on the Delhi govt's financial assistance scheme along with an article on situational analysis of the state government's initiative of household economic strengthening is provided in Annexure 3 and 4. India HIV/AIDS Alliance, V ihaan proj ect As part of the Vihaan project, two Care and Support Centres (CSC) have been initiated in Delhi along with five Helpdesks (HD) in collaboration with different NGOs and community based organisations. The two CSC located in South and North West Delhi are run by the Delhi Network of Positive People (DNP+). Nai Umang Positive Welfare Society, Jagriti, Love Life Society, OPNP+ (Om Prakash Network of People living with HIV/ AIDS) and DPWN+ (Delhi Positive Women Network have been running the helpdesks in the city. India HIV/AIDS Alliance is the principal recipient (PR) for a three-year, Global Fund- supported national programme providing care and support to people living with HIV (PLHIV). Under the programme - known as 'Vihaan', which means dawn's first light in Sanskrit - Care and Support Centres (CSCs) are to be established in 350 district-level locations across 31 states and union territories with the goal of improving survival and ensuring quality of life of PLHIV. Part of the national HIV strategy NACP IV, CSCs will provide information on care and support, adherence education, health referrals, and linkages to social welfare schemes. It will be a safe place for PLHIV (including women, children, female sex workers, men who have sex with men, transgender, hijras and people who use drugs) and their affected families. Prior to initiating the programme, nine regional consultations covering 28 states and three Union Territories took place during March 2013. Representatives from 30 government nodal agencies working for AIDS control, 286 NGOs and CBOs and 261 PLHIV networks from across the country participated in the consultations to discuss strategies and operational aspects of the programme roll-out. The nature of community involvement, ownership and accountability were also discussed in detail. Following the consultations, there was a transition from the older Community Care Center (CCC) model to the new CSCs. Specialized service provisions for affected populations were identified, and the role of PLHIV networks in care and support were discussed. The meetings encouraged PLHIV networks to apply to manage and implement Vihaan at state and district levels, and the process has helped ensure strong community participation in the scale up of the new care and support model for PLHIV.

26 Launched in April 2013 and rolled out in August, Vihaan is currently being implemented in partnership with 17 sub-recipient organisations and 285 sub-sub-recipients in 31 states and union territories. More than 80% of Vihaan partners are PLHIV networks at state and district levels.20 The objectives and activities21 include • Early linkage of PLHIV to care, support and treatment services: The CSC will support newly detected PLHIV to enhance enrolment and retention in care i.e. pre-ART registration and timely initiation of ART. • Improved treatment, education and adherence for PLHIV: Special focus will be paid to increasing adherence through interpersonal communication, and to minimise lost to follow up. • Expanded positive prevention activities: PLHIV will be counselled and linked to services for positive prevention including condom use, screening and treatment of STI and reproductive health and family planning. • Improved social protection and well being of PLHIV: Vihaan will assess, leverage and link PLHIV to address psychological, physical and social needs including counselling, education, nutrition, livelihood options, pension and housing schemes, insurance and legal services, with special focus on women and children. • Strengthened community systems and reduced stigma and discrimination: Crisis response systems will be established to document and redress crisis as a result of stigma and discrimination to protect rights to health, education and employment. *181920211214910

9 NACO website: naco.gov. in 10http://www.naco.gov.in/upload/Surveillance/Reports & Publication/Technical Report-India HIV Estimates 2012.pdf, National Institute of Medical Statistics and NACO, 2012 nhttp://www.naco. gov. in/up load/Surveillance/Reports & Publication/Technical Report-India HIV Estimates 2012.pdf, National Institute of Medical Statistics and NACO, 2012 12 Name changed “ Updated Guidelines for Prevention of Parent to Child Transmission (PPTCT) of HIV using Multi Drug Anti-retroviral Regimen in India, December, 2013 14 DSACS website “Updated Guidelines for Prevention of Parent to Child Transmission (PPTCT) of HIV using Multi Drug Anti-retroviral Regimen in India, December, 2013 “Website of DSACS “Interview with Dr. A.K. Gupta, APD and Technical Lead, DSACS 18 Operational Guidelines for Implementation of CAB A Scheme, NACO, May 2010 19 DSACS data 20 Paving the Pathway: PLHIV community consultations enhance national care and support programme in India, Alliance India poster for ICAAP2013 21http://www.khpt.org/Vihaan.html (Karnataka Health Promotion Trust)

27 CHAPTER National Policies and Guidelines

The National AIDS Control Organisation (NACO) Following the detection of the first case of HIV in the country, the National AIDS Committee was constituted under the Ministry of Health and Family Welfare. The shift from the high risk groups to the general population and from the urban to the rural areas pointed to the need for a comprehensive National AIDS Control Policy to effectively control the epidemic in the country. NACO through 35 HIV/AIDS Prevention and Control Societies at the State level has been striving to end the disease in the country. The rapid spread of HIV/ AIDS in the late 1980s, led to the launch of the first National AIDS Control Programme (NACP) (1992-1999) to coordinate national efforts covering surveillance, blood screening and health education. NACO was constituted to implement the programme. A detailed note on NACP I to IV is provided in Annexure 5. NACO envisions an India where every person living with HIV has access to quality care and is treated with dignity. Effective prevention, care and support for HIV/ AIDS is possible in an environment where human rights are respected and where those infected or affected by HIV/ AIDS live a life without stigma and discrimination. NACO has taken measures to ensure that people living with HIV have equal access to quality health services. By fostering close collaboration with NGOs, women's self-help groups, faith- based organisations, positive people's networks and communities, NACO hopes to improve access and accountability of the services. It stands committed to building an enabling environment wherein those infected and affected by HIV play a central role in all responses to the epidemic - at state, district and grassroots level. NACO is committed to contain the spread of HIV in India by building an all-encompassing response reaching out to diverse populations and endeavours to provide people with accurate, complete and consistent information about HIV, promote use of condoms for protection, and emphasise treatment of sexually transmitted diseases. NACO works to motivate men and women for a responsible sexual behaviour. NACO believes that people need to be aware, motivated, equipped and empowered with knowledge so that they can protect themselves from the impact of HIV. NACO is built on a foundation of care and support, and is committed to consistently fabricate strategic responses for combating HIV/ AIDS situation in India. NACO envisions: • Building an integrated response by reaching out to diverse populations. • A National AIDS Control Programme that is firmly rooted in evidence-based planning.

28 • Achievement of development objective. • Regular dissemination of transparent estimates on the spread and prevalence of HIV/ AIDS. • Building an India where every person is safe from HIV/ AIDS. • Building partnerships. • An India where every person has accurate knowledge about HIV and contributes towards eradicating stigma and discrimination. • An India where every pregnant woman living with HIV has the choice to bring an HIV free baby into the world. • An India where every person has access to Integrated Counselling and Testing Centres (ICTC). • An India where every person living with HIV is treated with dignity and has access to quality care. • An India where every person will eventually live a healthy and safe life, supported by technological advances. • An India where every person who is highly vulnerable to HIV is heard and reached out to. HIV/AIDS Bill 2007 The HIV/AIDS Bill was drafted in 2006, "to provide, keeping in view the social, economic and debilitating effects of the HIV epidemic in India, for the prevention and control of the HIV epidemic in India, the protection and promotion of human rights in relation to HIV/ AIDS, for the establishment of National, State, Union Territory and District Authorities to promote such rights and promote prevention, awareness, care, support and treatment programmes to control the spread of HIV, and for matters connected therewith or incidental thereto.22 It was drafted after nationwide consultations with different stakeholders, including PLHAs, communities at risk of HIV, healthcare workers, children's organisations, women's groups, trade unions, lawyers, and State AIDS Control Societies. The Bill provides for protection against discrimination in employment, education, healthcare, travel, and insurance. Under Special Provisions, it talks extensively about various entitlements for children, including health, education, child and youth friendly initiatives, protection of property of CLHA. An interesting aspect under the Bill is the "recognition of guardianship of older sibling". It mentions that "a person below the age of 18 years who is the managing member of a family affected by HIV/ AIDS shall be competent to act as guardian of any other persons below the age of 18 years who are members of such family" for the purposes of admission to educational institutions, care and protection, treatment, operating bank accounts, managing property among others. It calls for review of laws and policies affecting persons below the age of 18 years and children affected by HIV/ AIDS, including the Juvenile Justice (Care and Protection) Act, 2000 and rules related to foster care and adoption. It emphasises the "Right of Residence" of women and children in a shared household, enjoying and using all facilities in a non-discriminatory manner. However the Bill kept shunting between the health and law ministries and activists, lawyers and people living with HIV have been fighting for years for the Bill to be introduced in the Parliament.

29 On 11th February 2014, the Bill was finally tabled in the Rajya Sabha by the Health Minister Mr. Keeping these commitments in mind, the Govt of India has initiated a number of measures Ghulam Nabi Azad. related to children, including a full-fledged Ministry of Women and Child Development. As the It is considered an important milestone in achieving equal rights and ending discrimination nodal ministry with the mandate to have holistic development of women and children, it against PLHA. As the Bill was introduced in the Rajya Sabha, it would not lapse with the end of formulates plans, policies and programmes, enacts and amends legislation and guides and the term of the Lok Sabha and is expected to go to the Parliamentary Standing Committee on coordinates the efforts of govt and NGOs working in this area.23 Health and Family Welfare for their recommendations. According to the recommendations of the The Ministry has been implementing the world's largest outreach programme of Integrated Committee, the Bill may be amended and reintroduced in the Parliament to be passed. Child Development Services or ICDS providing a package of services including supplementary Besides this, the judiciary has been playing a very proactive role in the context of HIV and related nutrition, immunisation, health check up and referral services, pre-school non-formal education. issues. Some of the recent court decisions are mentioned in Annexure 9. In the recent past, the Ministry has initiated universalisation of ICDS and Kishori Shakti Yojana, launched a nutrition programme for adolescent girls, and established the Commission for India's Commitment to Child Rights Protection of Child Rights at the national and state level. India acceded to the UN Convention on the Rights of the Child on 11th Dec., 1992 to reiterate its National Plan of Action for Children, 2005 commitment to the cause of children. The objective of the Convention is to give every child the right to survival and development in a healthy and congenial environment. The National Plan of Action for Children, 2005 commits itself to ensure all rights to all children upto the age of 18 years. "The Government shall ensure all measures and an enabling India was party to the Declaration adopted in the World Summit for Children held in 1990 which environment for survival, growth, development and protection of all children, so that each child adopted goals for the Member Countries to be achieved by 2000. The UN Special Session on can realize his or her inherent potential and grow up to be a healthy and productive citizen." Children held in May, 2002 set, by consensus, after negotiations lasting about a year and a half, fresh quantitative and qualitative goals for children for the present decade relating to survival, Twelve key areas were identified under the Plan keeping in mind the priorities and the intensity health and nutrition, early childhood care and education, and child protection. of the challenges that require utmost and sustained attention in terms of outreach, programme interventions and resource allocation, to ensure the rights and entitlements of children at each Constitutional Provisions stage of childhood. India's commitment to children is clearly manifested in its Constitution wherein several articles In the context of children living with HIV, the following areas are of utmost importance: are dedicated to children, viz.:- • Reducing Infant Mortality Rate. • Article 14 — The State shall not deny to any person equality before the law or the equal protection of laws with in the territory of India. • Reducing Malnutrition among children. • Article 15 — The State shall not discriminate against any citizen... Nothing in this Article shall • Universalization of early childhood care and development and quality education for all prevent the State from making any special provisions for women and children. children achieving 100% access and retention in schools, including pre-schools. • Article 21 — No person shall be deprived of his life or personal liberty except according to • Addressing and upholding the rights of Children in Difficult Circumstances. procedure established by law. • Securing for all children all legal and social protection from all kinds of abuse, exploitation • Article 21 A — The State shall provide free and compulsory education to all children of the age and neglect. of 6-14 years in such manner as the State may, by law, determine. • Monitoring, Review and Reform of policies, programmes and laws to ensure protection of • Article 23 — Traffic in human beings and beggar and other forms of forced labour are children's interests and rights. prohibited and any contravention of this provision shall be an offence punishable in • Ensuring child participation and choice in matters and decisions affecting their lives. accordance with the law. Under Child Health, the Plan specifically outlines the following strategies in the context of • Article 24—No child below the age of 14 years shall be employed to work in any factory or children affected by HIV: mine or engaged in any other hazardous employment. 1. "Take steps to prevent transmission of HIV/AIDS to children, including from mother to • Article 39(f) - Ensure that children are given opportunities and facilities to develop in a child. healthy manner and in conditions of freedom and dignity and that the childhood and youth 2. Ensure care, support treatment to children infected and affected by HIV/AIDS. are protected against exploitation and against moral and material abandonment 3. Ensure non-discrimination and full and equal enjoyment of all human rights through the • Article 45— The State shall endeavour to provide early childhood care and education for all promotion of an active and visible policy of destigmatization of children orphaned and made children until they complete the age of six years. vulnerable by HIV/AIDS. The Constitution (86th Amendment) Act was notified on 13th December 2002, making free and 4. Take measures to raise awareness about HIV/AIDS and its prevention among all children, compulsory education a Fundamental Right for all children in the age group of 6-14 years. especially those at risk."

30 31 One of the strategies under Maternal Health is to "strengthen health interventions under Reproductive and Child Health Programme" including prevention and treatment of Reproductive Tract Infections/ Sexually Transmitted Diseases/ HIV/ AIDS. All these measures are important to ensure decrease in the mother to child transmission of HIV and ensuring maternal health. The recent case of a pregnant HIV positive teenager, rescued from a brothel, being allowed to terminate her pregnancy by the Delhi High Court (December 2013) highlighted the country's commitment to the issue.24 The nineteen year old submitted to the court that she was from "the poor strata of the society and it was a forced pregnancy amounting to rape." The court accepted her argument to abort the 19 week old foetus on "grounds of ill health", even though the Medical Termination of Pregnancy Act prohibits abortion above 12 weeks. Delhi High Court allows HIV + teenager's plea for terminating pregnancy Friday, Dec 6,2013,20:541ST | Agency: PTI The Delhi High Court today allowed the plea of a pregnant HIV positive teenager, who was rescued from a brothel, for termination of her pregnancy. Justice Sunita Gupta allowed the 19-year-old's petition while accepting her submissions that she was from the poor strata of the society and it was a forced pregnancy amounting to rape as she was in the brothel. The court also accepted the girl's argument that she wanted to abort the fetus on grounds of ill health. The court directed the Delhi government to take her to Deen Dayal Upadhyay Hospital while asking its Medical Superintendent to constitute a medical board to examine her and terminate her pregnancy within three days. In addition, the court directed the government to ensure that the girl got proper medicines and diet during the treatment. Justice Gupta passed the order after the city government responded to the court's notice and said that it had no objection to getting the 19-week-old fetus aborted. In her petition, the girl said she was rescued from a brothel along with other girls by the police after a raid. According to the petition, all the girls were sent to the care of Nari Niketan. She also said that she had informed the authorities that she is pregnant and wanted to terminate it as the child was conceived in forceful and undesired sexual intercourse. When her repeated requests for abortion were ignored by the state authorities, she had decided to move the court for direction to end the pregnancy, she said. Her counsel argued that the state has a legal obligation to provide the girl medical care as she is HIV positive and continues to remain in bad health. The court was told that the Nari Niketan authorities had refused to accede to her request citing the Medical Termination of Pregnancy Act which prohibits abortion of a fetus which above 12 weeks. To ensure proper nutrition of a child living with HIV, one of the strategies outlined in the National Plan of Action for Children includes "Ensure early detection and prevention of disability and give special attention to the nutritional needs of children with disabilities and children affected by other illnesses like HIV/ AIDS, TB, etc."

32 Adolescents are one of the most vulnerable groups and at risk of getting infected given the lack of correct information at the right age. One of the objectives of the Plan for this age group is 1. "To generate awareness among adolescents, including in-school and out-of-school adolescents, regarding health and health care, hygiene, nutrition, drugs, alcohol, tobacco and other forms of substance abuse, HIV/ AIDS prevention, reproductive health, sexuality and sexual responsibility. 2. To provide education that enables adolescents to protect themselves from HIV/ AIDS. 3. To provide requisite care, counselling and services for adolescents affected by HIV/ AIDS." It further emphasises on integrating comprehensive lifeskills related to HIV/AIDS, health, hygiene and sanitation in the school's curriculum. However not much has been achieved in this direction and efforts need to focus on providing correct, timely, age-appropriate knowledge to young people. The 2005 National Plan of Action for children identifies the following goals in the context of children affected by HIV/ AIDS and outlines the objectives and strategies. a. "To stop the growth of HIV/ AIDS and sexually transmitted infections by 2010. b. To reduce the proportion of infants infected with HIV by 20 per cent by 2007 and by 50 % of all such children by 2010." As for the institutional mechanism for implementation of the Plan, it highlights the role of the Panchayats to create awareness and take measures "for giving refuge to street children and combating HIV/ AIDS". It is interesting to note that while the National Plan of Action for Children had clearly laid out the various goals, objectives and strategies in the context of children infected and affected by HIV way back in 2005, in terms of implementation a lot needs to be done. Discrimination against children infected and affected by HIV continues in the different spheres of life - in their homes, families, communities, educational institutions and medical services. Annexure 11 has some of the related media reports regarding discrimination faced by children. The government's efforts to reach out to the general population through mass media about the infection and its prevention have been unable to create awareness to that extent. Even now there are myths like mosquito bites, sharing utensils or clothes or even nail cutters can lead to HIV. Policy Framework for Children and AIDS, July 2007 The Policy Framework for Children and AIDS, released by NACO and Ministry of Women and Child Development, adopts a rights based lifecycle approach. It takes into account the changes in the global understanding of the adverse impacts of HIV/ AIDS on children, and of the best ways to address them. The overall goal is that "India will provide a sustainable and integrated system of HIV prevention, counselling, testing, treatment, care and support to ensure that children who are vulnerable to HIV-infection or who are HIV-positive or otherwise affected by HIV/ AIDS enjoy the same benefits and opportunities as all other children to develop their full potential." The first priority of this Policy is to prevent HIV infection, in order to ensure an AIDS-free generation. In addition to prompt diagnosis, the focus was to ensure access to treatment to prolong life. Treatment of parents is vital to maintain family cohesion and protect the best

33 interests of children. Where families are • Children in need of care and protection affected by HIV/AIDS, the imperative is • Children in conflict with law to ensure they are not excluded from the • Children in contact with law same services and opportunities as others. • Any other vulnerable child For families affected by HIV/AIDS, the Policy would seek to ensure their The ICPS defines a child in need of care and protection as any child who: inclusion and access to social services and • "Is found without a home or settled place or abode and without any ostensible means of opportunities. subsistence. The Policy on children and HIV/AIDS • Resides with a person (whether a guardian of the child or not) and such a person has seeks to broaden the partners to threatened to kill or injure the child and there is a reasonable likelihood of the threat being implement the vision, the guidelines and carried out, or has killed, or abused or neglected some other child or children and there is a the interventions proposed. It provides a reasonable likelihood of the child in question being killed, abused or neglected by that mandate and a framework for government person. 'Policy Framework for Children and AIDS' departments working at all levels of • Is a mentally or physically challenged or ill child or a child suffering from some terminal governance for the welfare of children to India disease or incurable disease, and / or having no one to support or look after him/ her. collaborate and also establishes a 31 July 2007 mechanism to coordinate the efforts of • Has a parent or guardian who is unfit or incapacitated to care for or supervise the child. civil society and NGOs and the private • Does not have a parent/s and no one is willing to take care of him/ her or has been sector, non profit and for profit in the abandoned or is a missing child and or a runaway child. achievement of its aims and objectives. • Is being or is likely to be grossly abused, tortured or exploited for the purpose of sexual abuse It stresses that "India has a unique or illegal acts. opportunity to use her strengths - low • Is found vulnerable and is likely to be inducted in to drug abuse or trafficking. prevalence, concentrated epidemic, • Is being or is likely to be abused for unconscionable gains. rapidly increasing ART coverage, strong government structures and family safety • Is victim of any armed conflict, civil commotion or natural calamity." nets, growing recognition and advocacy Under the category of any vulnerable child, the Scheme "provides preventive, statutory and care for human rights and a robust media - to free the next generation from the burden of AIDS." and rehabilitation services to any vulnerable child including but not limited to children of This Policy Framework provides guidance to each ministry for undertaking detailed planning of potentially vulnerable families and families at risk, children of socially excluded groups like programme activities in order to scale up interventions. Operational guidelines have been migrant families, families living in extreme poverty, socially disadvantaged families, families developed to guide such programming and scale up. subjected to or affected by discrimination, minorities, children infected and /or affected by HIV/AIDS, orphans, child drug abusers, children of substance abusers, child beggars, trafficked Integrated Child Protection Scheme (ICPS) 25 or sexually exploited children, children of prisoners and street and working children." The Integrated Child Protection Scheme (ICPS) is a centrally sponsored scheme aimed at building Taking into account the rehabilitation of children affected by HIV and AIDS, it includes them a protective environment for children in difficult circumstances, as well as other vulnerable under "institutional services" for "specialised services for children with special needs". children, through Government-Civil Society Partnership. Highlighting the need for specialised care and treatment for these children, it emphasises the A comprehensive scheme introduced in 2009-10, it brings existing child protection programmes need for comprehensive facilities to be provided to them at the homes, including medical, under one umbrella, with improved norms, based on the cardinal principles of "protection of nutritional and diet counselling, education and vocational training, rehabilitation and social child rights" and the "best interest of the child". integration and counselling and psychological support, besides recreational activities. The Scheme would "institutionalize essential services and strengthen structures, enhance A landmark case in the context of HIV and children was when in 2012, the Delhi Consumer capacities at all levels, create database and knowledge base for child protection services, Commission ordered Kalawati Saran Children's Hospital to pay Rs. 10 lakhs as damages to the strengthen child protection at family and community level, ensure appropriate inter-sectoral parents of a child for transfusing HIV infected blood to him 14 years ago during his infancy. A response at all levels." news clipping of the same case follows: The various target groups under the Scheme include

34 35 Boy gets HIV from hospital, bench gives compensation 22 2324*26 HT Correspondent, Hindustan Times CHAPTER New Delhi, October 04, 2012 Civil Society and A Delhi consumer court has directed city's Kalawati Saran Children's Hospital to pay Rs 10 lakh to the parents of a child who was given HIV infected blood when he was an infant 14 years ago. A bench of VK Gupta and Salma Noor held the hospital and doctor Ajay Kumar NGO Initiatives guilty of medical negligence. The consumer court bench said, "It was the duty of the doctor and the hospital to examine that the blood is free of any infection. Obviously, there is sheer medical negligence on the In a large and diverse country like India, civil society groups and NGOs play a vital role to ensure part of the doctor and the hospital in not examining and ensuring that the blood does not that the govt initiatives, programmes and schemes reach out to the masses. In the context of HIV, contain any HIV infection." these groups have been involved in creating awareness, organising prevention programmes, The child's parents had alleged that their son was never free of ailments subsequent to his providing care and support, doing advocacy and ensuring people living with HIV are linked to treatment at the children's hospital in 1998. Later, following tests at Safdarjung Hospital, he available services and resources. In recent years many community based organisations and was diagnosed with HIV in January 2006. positive networks have also joined the efforts to eradicate HIV in the country. The parents remembered that their son had undergone surgery at the hospital for Many of these groups are involved in care and support initiatives for children infected and diaphragmatic hernia when he was a baby and 150 ml of blood was transfused to him. affected by HIV. Some of them have residential care facilities for orphaned and abandoned CLHA Calling it "sheer medical negligence" for giving HIV-infected blood to the then three-day- or CCC, while others provide home based care. Manavya, Snehalaya, Sewalaya, Ashray, Bel Air old child, the court ordered the hospital to pay up. Hospital, Tara Children's Home, Satyakam, Bhagini Nivedita Seva Prathisthan, Caritas have "It is a matter of common observation that it is a very serious disease and a person having been contributing through various initiatives. this ailment cannot survive long. We hereby direct them to pay compensation for mental In Delhi, Shalom, the Naz Foundation (India) Trust, Society for Promotion of Youth and Masses agony and harassment to the complainants (parents), inclusive of litigation charges," the (SPYM), Salaam Baalak Trust, WAG...CHELSEA, Sahara, Sharan, MAMTA, Delhi Network of bench added. Positive People, Nai Umang Positive Welfare Society, Rafa, Child Survival India are some of the The children's hospital had said the blood was procured from the blood bank of Sucheta organisations that have been involved in various activities. Kripalani Hospital, which is affiliated to Lady Hardinge Medical College along with the Shalom Delhi 27 said children's hospital, and the blood bank would have conducted necessary screening Shalom Delhi is a project of Emmanuel Hospital Association (EHA), a large nonprofit provider of and testing of the blood. health care, having a network of 20 hospitals and 40 community based projects across 14 states of India with a 42 year history of being involved in holistic work. Since 1995 EHA has contributed in HIV/AIDS management with a Mission that EHA would be committed to promoting the effective prevention of HIV transmission and provision of unconditional, compassionate care for people infected and affected by HIV / AIDS. Keeping this mission in mind HIV/AIDS work was started in Delhi in the year 2001 as the "Delhi AIDS Project" (DAP). Phase 1 of the work included the establishment of medical services, home based care (HBC), capacity building for NGOs and FBOs (faith based organisations) in HIV/AIDS and support for widows and children infected and affected by HIV/AIDS. The project, now known as Shalom, which in Hebrew means peace and abundance of life is Gods peace amidst the brokenness that can be caused by HIV/AIDS. This project has emphasised on continuum of holistic care which involves support in the medical, emotional, social and spiritual

22 The HIV/AIDS Bill 2007 aspects of a person's life. Since its initiation there has been a strong emphasis on training and 23http://wcd.nic.in/ capacity building of the church and other organisations to care for those affected by HIV/AIDS. 24 Delhi High Court allows HIV+ teenager's plea for terminating pregnancy, DNA, 6 December 2013 ^Ministry of Women and Child Development, Integrated Child Protection Scheme http://wcd.nic.in/icpsmon/st_abouticps.aspx The second phase of the Shalom Project from 2005-2007 sought to strengthen and expand this 26 http://www.hindustantimes.com/StoryPage/Print/939535.aspx?s=p 1/1 continuum of services especially the Home Based care work by introducing income generating

36 37 activities for women widowed by HIV/ AIDS, initiation of an adolescent programme to help the adolescents within the Home based care families, their relatives and peers from being infected. The third phase was from 2008-2011. During this phase an Urban Health Programme was set up to mobilise churches to be involved with the lives of the urban poor to bring about community transformation. A need was also seen to work among the transgender community in Delhi to provide care and support to the eunuchs living with HIV and this work began in 2009. It also aimed at sensitising churches and Christian leaders to respond to the needs of eunuchs. A Palliative care programme begun in 2011 to improve the quality of life through the provision of skilled symptom control to those suffering from HIV/ AIDS and other terminal illnesses. During the fourth phase (July 2011-Sept 2014) the Shalom project has been relocated to a new premise in North Delhi. The Naz Foundation (India) Trust Naz Care Home The Naz Foundation (India) Trust is an NGO that has been working in the field of HIV/ AIDS since 1994. In 2001, after a child living with HIV was abandoned at their doorstep, they opened a Care Home for orphaned and abandoned children living with HIV/ AIDS. The residential care home has about 30 children between the ages of seven and 19 years. The children have come from across the country - from Maharashtra, Manipur, Uttar Pradesh, Bihar, Rajasthan, Haryana and Delhi, referred by child care institutions, orphanages, hospitals and NGOs. Naz India has given the children a lifetime commitment and provides for their educational, nutritional, medical, recreational as well as psycho-social needs. The Home provides a holistic approach to the children's health and well being. It provides a safe environment in which the children can learn to interact with others while being looked after by caregivers round the clock. Nutrition is vital for people living with HIV, especially children. During the course of their intervention the need for providing balanced, nutritious diet for people living with HIV was realised. It not only prevents the occurrence of opportunistic infections but also ensures that the asymptomatic stage of HIV infection is prolonged. At the Naz Care Home, the meals are planned with an emphasis on a well balanced diet, inclusive of vegetables, fruits, cereals and pulses. All the children attend mainstream school. The Care Home takes care of school fees, books, uniform and transportation. Tutors and volunteers work intensively with the children after school to help them with their homework and provide additional inputs. The children have yoga classes and are taken for educational and recreational trips. Many of the older children are adolescents and are experiencing puberty-related changes. Their issues around body changes, sexuality, and curiosity need to be addressed. Counsellors have addressed their concerns and equipped them with skills to deal with issues of living with the infection. A part time doctor is available to ensure the children receive timely health care. Naz provides medications to treat opportunistic infections, as well as vitamins and other supplements necessary to boost the children's immune systems.

38 Home based care: Naz Foundation also initiated a home based care programme for children infected and affected by HIV. Initially started in 2001 for adults living with HIV, it started catering to children. Counsellors under the programme visited the hospitals, followed by a home visit to assess the needs of the child. Children were initially provided nutritional support - milk and an egg or fruit daily. Instead of giving the family financial support, it was tied up with a local vendor. With close monitoring, it was ensured that the child received the nutrition on a daily basis. There were visible changes in the health condition of the children. Besides counselling support to the child and their caregivers, ration and material support was offered to enhance the quality of their lives. They were linked to existing services and monthly skill building sessions were organised for the families.

Delhi Network of Positive People Delhi Network of Positive People (DNP+) began as a small support group in 2000 for people living with HIV. It was awarded the UNAIDS Red Ribbon Award at the International AIDS conference in 2012, one of ten organizations selected from over 1400 nominees. The organisation seeks to improve the treatment and facilities for PLHIV and provides a platform to help empower patients to make informed treatment decisions. Over the years their work has grown and expanded from being a support group to now providing service delivery and advocating human rights. DNP+ wants PLHIV to be active participants in their recovery and to use to the fullest extent the benefits which they have received. DNP+ has established the Delhi Mahila Samiti (DMS) - the Women's Forum of DNP+ with the vision "to improve the quality of life of women and children living with HIV in Delhi thereby reducing vulnerabilities of women, girls and children." DMS focuses on specific issues of women and children living with HIV in Delhi. MAMTA HIV and AIDS Prevention, Care and Support is one of the core areas of MAMTA's intervention. MAMTA has been implementing different projects and programmes to respond to HIV and AIDS, addressing the (un)met needs of vulnerable sections of the population and extensively worked with the community and service system to bring about a change towards addressing health issues at micro and macro level. Community mobilisation, strengthening / capacity building of community institutions formal - non formal and PNGOs, networking and advocacy are the basic strategies of the execution. During the course of working with the system, MAMTA has been designated National Training Resource Institution by NACO and UNDP to roll out Link Worker Scheme under NACP III specifically in A & B Category Districts of Rajasthan, UP, Bihar, Chhattisgarh and Orissa state in Northern India. Presently MAMTA is directly and indirectly implementing different thematic based HIV, AIDS and TB Projects in close coordination with MoH&FW, NRHM, NACO, SACS, Positive Network of PLHIV at District, State and National level to compliment the efforts of National and International Government and NGOs.

39 The organisation's focus is on community mobilization and involvement as these strategies facilitate attitude and behaviour change. MAMTA has developed training modules to promote interventions by PNGOs and CSO on topics such as techniques for data collection and data CHAPTER analysis, participative prevention, building partnerships in the area of HIV/AIDS and TB, peer education, community involvement and participative evaluation. MAMTA is partnering with India HIV/AIDS Alliance on the implementation of Vihaan in Delhi. These are some of the organisations working on HIV in the capital city of Delhi. There are many more organisations who are working on various aspects of HIV and implementing projects on the ground. Children infected and affected by HIV/AIDS face various challenges in their day to day life. The fight for survival, malnutrition, opportunistic infections, lack of support mechanisms, and trauma all impact their impressionable minds. However the biggest challenge is the stigma and discrimination they face in our society. Implementation of government policies and guidelines: Over the years the care and treatment mechanisms have improved and given them a hope to lead longer, healthier lives. The various govt policies, programmes and strategies have taken into account their vulnerability and tried to ensure that they get their rights and entitlements. Multisectoral approaches can definitely enhance their quality of life. However while we have policies and guidelines in place, we need to ensure that they are implemented on the ground and the necessary action taken in a timely manner. Linkages with existing social welfare schemes like old age pension, widow pension, ICDS, mid­ day meals, BPL cards will ensure better care for CABA and their retention within the family or community while access to discrimination-free education and medical facilities will help them in the future. Convergence of the different ministries and a multisectoral approach will help in translating the policies and strategies into reality. Residential care homes for children infected and affected by HIV: Community based care is the best option for children infected and affected by HIV and in the best interest of the children. However our experiences in the past have shown the need for exploring alternative options for providing stigma free environment for these children. Delhi has a couple of residential care facilities for positive children, but they are unable to accommodate the growing number of children in need of care and protection. With the death of parents, children are getting orphaned. Even if they have a surviving parent, they are unable to take care of the children. Most often the infected and affected children do not have other caregivers to take care of their needs or they are abandoned by their relatives. Another issue is that affected siblings cannot be accommodated in the same care facility as infected children. This usually leads to the separation of infected and affected siblings, the only family bond they have. Alternative care: We need to also explore the option of foster care and adoption of CABA. Foster care can be explored as an alternative for both infected and affected children. This would ensure that children are placed in a family setting and receive the love and care of the foster families. There have been instances in the past where infected children have been adopted by families in the United States and Sweden. Though few in numbers, this could be looked at as alternative and 27 Shalom Delhi Annual Report April 2011 - March 2012 adequate measures taken to promote these options.

40 41 To begin with awareness must be created among adoptive and foster families about HIV so as to ensure the child is not discriminated and is provided adequate care, support and treatment. ANNEXURE After care facilities: As per the definition, a child refers to individuals in the age group of 0 to 18 years. However we realise that children infected and affected by HIV need after care facilities to List of become independent. Most of them have little or no family support and are financially not strong. While some are unable to access education, others start formal education at a later stage and are Abbreviations not in a position to earn their livelihood or lead an independent life once they turn 18. The lack of after care facilities in the Capital city is a concern which needs to be looked into seriously. Legal support for children: Legal support mechanism for CABA is essential to ensure they get their inheritance and property rights. The Child Welfare Committees, as envisaged in the HIV AIDS Acquired Immune Deficiency Syndrome Bill, can play a pivotal role in this matter to safeguard the property rights of the children. Given ANC Ante-natal care that children have a better opportunity to live longer, healthier lives, their legal rights need to be ANM Auxiliary Nurse Midwifery safeguarded. APD Additional Project Director Financial assistance scheme: The financial assistance scheme initiated by the Delhi govt has ART Antiretroviral Therapy helped this segment of children. However we need to ensure that it reaches out to a wider section of CABA. Often the lack of documents like death certificate, proof of residence can hinder their ARV Antiretroviral access to these schemes. If the processes are simplified, more children would be able to get the ASHA Accredited Social Health Activist benefits. AWW Anganwadi worker The biggest hindrance continues to be the widespread stigma and discrimination associated with AZT Zidovudine HIV and creating awareness and breaking the myths and misconceptions linked with the disease, BF Breastfeed can go a long way in restoring the rights of the infected and affected children in our country. We need to ensure children have access to correct, timely information to not only protect themselves BMGF Bill and Melinda Gates Foundation but also help those already infected. BPL Below Poverty Line We continue to hear about the violation of rights of children infected and affected by HIV. It is CABA Children Affected by AIDS time we take proactive measures to ensure that these children in difficult circumstances are CCC Community Care Centre provided the care, support, protection and treatment that they have been denied in the past. CCM Country Coordinating Mechanism CD4 Cluster of Differentiation 4 CII Confederation of Indian Industry CLHA Children Living with HIV/AIDS CLHIV Children Living with HIV CST Care, Support and Treatment CSW Commercial sex worker DAC Department of AIDS Control DCPCR Delhi Commission for Protection of Child Rights DFID Department for International Development DIC Drop-in-centre DLN District level network DM District Magistrate DSACS Delhi State AIDS Control Society

42 43 DOTS Directly Observed Treatment - Short term RNTCP Revised National Tuberculosis Control Programme EID Early Infant Diagnosis SACS State AIDS Control Society FICCI Federation of Indian Chambers of Commerce and Industry STD Sexually Transmitted Diseases FSW Female sex worker TB Tuberculosis GIPA Greater Involvement of People with HIV/AIDS TC Transfer certificate GFATM Global Fund for HIV/AIDS, Tuberculosis and Malaria TI Targeted intervention HEI HIV exposed infants UN United Nations HIV Human immuno-deficiency virus UNAIDS United Nations Joint Programme on AIDS HRG High risk group UNDP United Nations Development Programme ICTC Integrated Counselling and Testing Centre UNICEF United Nations Children Fund ICDS Integrated Child Development Scheme UNCRC United Nations Convention on the Rights of the Child ICPS Integrated Child Protection Scheme UNHCR United Nations High Commission for Refugees IDU Injecting drug users UNFPA United Nations Population Fund IEC Information education communication UNODC United Nations on Drugs and Crime ILO International Labour Organisation UNESCO United Nations Educational, Social and Cultural Organisation IPC Indian Penal Code WFP World Food Programme M&E Monitoring and Evaluation WHO World Health Organisation MDG Millennium Development Goals MSM Men having sex with men MWCD Ministry of Women and Child Development NACO National AIDS Control Organisation NACP National AIDS Control Programme NAT Nucleic Acid Amplification Testing NCR National Capital Region NCPCR National Commission for Protection of Child Rights NGO Non-governmental organisations NRHM National Rural Health Mission OI Opportunistic infection ORW Outreach worker OVC Orphan and vulnerable children PD Project Director PLHA People living with HIV/AIDS PLHIV People living with HIV PFA Parliamentarians' Forum on HIV/AIDS PPTCT Prevention of parent to child transmission RCH Reproductive and Child Health

44 45 ANNEXURE Global Perspective

HIV/ AIDS continues to be a serious problem the world over. It is not merely a public health issue but continues to adversely impact the social and economic development of countries across the globe by aggravating poverty, increasing the public health spending and violating the human rights of those affected by it. According to UNAIDS28, there were 35.3 million (32.2 million-38.8 million) people living with HIV across the world in 2012. Since the beginning of the epidemic around 75 million have become infected with HIV. The United Nations in November 2013 reported the accelerated progress in combating HIV/AIDS with significant decrease in new infections and deaths but expressed concern that some regions and countries were falling behind in the global fight. New infections were on the rise in Eastern Europe and Central Asia and had doubled in the Middle East and North Africa since 2001. "New infections globally were estimated at 2.3 million in 2012, a 33 percent reduction since 2001 and AIDS-related deaths dropped by 30 percent since the peak in 2005 to 1.6 million, as access to antiretroviral treatment expanded", according to the Joint UN Programme on HIV/AIDS (UNAIDS). "9.7 million people in low and middle income countries were accessing antiretroviral therapy, an increase of nearly 20 percent in just one year." What is encouraging is that "new infections among children dropped to 2,60,000, a 52 percent reduction since 2001." UNAIDS stressed that in priority countries only three in 10 children receive HIV treatment, while 64 percent of adults do. "We have seen tremendous political commitment and results to reduce mother-to-child transmission of HIV, but we are failing the children who become infected," according to the UNAIDS Executive Director Mr. Sidibe. "We urgently need better diagnostic tools and child-friendly medicines irrespective of the market size." Although the number of children receiving antiretroviral therapy in 2012 increased by 14 per cent compared to 2011, the pace of scale-up was substantially slower than for adults, a 21 percent increase. Interventions at the international and national level have been going on to combat this disease and make "zero new HIV infections, zero discrimination and zero HIV related deaths" a reality. The importance is highlighted by Goal 6 of the United Nations Millennium Development Goals (MDG)29 which talks about the need to "Combat HIV/AIDS, malaria and other diseases". The first two targets specifically refer to HIV/ AIDS 1. Halt and begin to reverse, by 2015, the spread of HIV/ AIDS 2. Achieve universal access to treatment for HIV/ AIDS for ah those who need it

46 The 2013 Fact Sheet30 on MDG points towards some of the above recent achievements in this direction and mentions that "the MDG target of halting and beginning to reverse the spread of HIV has been met." It also highlights some of the positive developments in different countries31: 1. In Ethiopia, more HIV positive mothers are delivering babies free of the virus as an outcome of an effective programme of UNICEF and its partners to train 2,000 nurses and midwives on emergency obstetric and newborn care, along with PMTCT of HIV. 2. In Zambia, free HIV treatment reaches to Four Lakh people with the help of the Ministry of Health and UNDP. Global Fund support provided ART drugs to some 2,14,339 patients in 2012 and 1,95,679 in 2013, including HIV-positive pregnant women. 3. Peru is amending its penal code to provide broader access to HIV treatment for youths. Global Milestones 1981: Cases of unusual immune deficiency identified in USA 1982: AIDS defined for the first time 1983: HIV identified as the cause of AIDS; Heterosexual AIDS epidemic revealed in Africa 1985: First HIV antibody test becomes available 1987: WHO launches the Global AIDS Programme 1988: First therapy for AIDS - zidovudine, or AZT approved for use in the USA 1994: Highly Active ART launched 1996: First treatment regimen to reduce mother-to-child transmission of HIV 1997: Brazil becomes the first developing country to provide ART through public health system 2001: Global Fund to fight AIDS, Tuberculosis and Malaria launched 2003: Launch of "3 BY 5" initiative - goal of reaching 3 m people in developing world with ART by 2005 Despite the commitments and positive developments and trends across the globe, HIV continues to pose a major challenge for young people. According to UNICEF's The State of the World's Children 2011 report32, "Preventing the transmission of HIV is one of the most important challenges for adolescent survival and health. Although AIDS is estimated to be only the eighth leading cause of death among adolescents aged 15-19, and the sixth leading cause among 10-14- year-olds, it takes a disproportionately high toll in high-prevalence countries." It further adds that, "Many new HIV cases worldwide involve young people aged 15-24. In four of the world's seven regions, young females are more likely to be living with HIV than young males - around twice as likely. In Eastern and Southern African countries with adult HIV prevalence of 10 per cent or higher, prevalence among girls and women aged 15-24 is two to three times higher than it is for their male peers." It explains the high prevalence of HIV among girls and women. "The higher incidence of the virus among girls and women is not solely a result of their greater physiological susceptibility. In many settings, adolescent girls and young women face a high risk of sexual violence and rape, both inside and outside of marriage. Child marriage, though often intended by families to shield girls

47 and young women from physical and sexual risks, often fails to protect them from HIV and other sexually transmitted diseases because condom use tends to be lower in long-term relationships. Write up of the Plan ANNEXURE Moreover, the available evidence indicates that adolescent girls in child marriages and women in general, have less say than their partners over the use of contraception or over whether sex takes place at all." These challenges need to be kept in mind for designing and implementing any prevention programmes for adolescents and young people.

1. Name of the Scheme - Financial Assistance to People Living with HIV/AIDS on Anti Retroviral treatment, Double Orphan Children infected or /affected by HIV/AIDS and Destitute HIV positive Children in institutional care 2. Background- 2.1 People Living with HIV/AIDS (PLHAs) require lifelong anti retroviral treatment to prevent severe life threatening opportunistic infections. They also need extra nutrition in addition to balanced diet to cope up with their compromised immune system. The suffering from stigma and discrimination by the family, society and community at large, is compounded by the fact that many of PLHAs are poor. They are unable to even meet the cost of transportation to ART centre for Anti Retroviral treatment. Similarly there are few Double Orphan Children infected or/ affected by HIV/AIDS in Delhi, whose parents have died ( at least one parent due to HIV/AIDS) and these children eventually are either living with their grandparent or extended families or their parental status is unknown and in institutional care. They are often malnourished, suffer from stigma and discrimination and cannot afford proper education including cost for buying education related material and transportation to hospitals. 2.2. The above said financial assistance scheme, proposed by Pr. Secy (Heath), Govt. of Delhi, was approved by Cabinet vide decision No. 1838 dt. 07-12-2011; F.No. 3/2/2011-GAD/CN-3579- 3590 dt. 09-12-2011 2.2. As on 31st March 2012, 10822 PLHAs in Delhi are on Anti Retroviral Treatment (ART) at 9 ART centres of Delhi established in Major Govt Hospitals of Delhi. These centres are funded and monitored by Delhi State AIDS Control Society, Govt of Delhi and National AIDS Control Organization, Govt of India. The services that these patients get from ART centre free of cost are as under: • Free medical examination (outdoor) and indoor services in the hospital • Free Investigations like CD4 count • Free lifelong ARV drugs - one month stock is issued at a time • Free treatment of Opportunistic infections including TB treatment at DOTS • Psychosocial support and counselling for drug adherence and positive living

28 http://www.unaids.org/en/resources/campaigns/globalreport2013/factsheet/ 2.3 A double orphan child is one whose both father and mother have died and at least one of the 29 http://www.un.org/millenniumgoals/aids.shtml parents has died due to HIV/AIDS while destitute child is one whose parents are unknown. 30 http://www.un.org/millenniumgoals/pdf/Goal_6_fs.pdf Presently, 35 double orphans (14 infected with HIV/AIDS and 21 affected by HIV/AIDS) 31 Sources: The Millennium Development Goals Report 2013, United Nations, 2013; Organization of American States; UNAIDS (Getting to Zero); UNDP (Zambia); UNICEF (Democratic Republic of the Congo, Ethiopia, Think Wise). and 25 Destitute HIV positive children have been identified through network of NGOs 32 The State of the World's Children 2011, Adolescence An Age of Opportunity, UNICEF, February 2011 empanelled with DSACS.

48 49 2.4 The aims and objectives of the financial assistance scheme are: • Increasing access to Anti Retroviral Treatment (ART) by providing cost of transportation to access ART. This will help achieve >95% drug adherence and prevent emergence of drug resistance and need for costly second line treatment. • Improving nutritional status and physical capacity of the person to earn livelihood • Help Orphan children in accessing anti retroviral treatment, treatment of other infections that they are at risk, nutritional support, education and skill building. 3. Eligibility requirement 3.1 For assistance to people living xvith HIV/AIDS (PLHAs including infected children)- • Only People Living with HIV/ AIDS with minimum 1 year anti retroviral treatment in the preceding year will be eligible. They should have taken treatment / ARV drugs from the ART centre in each of the preceding 12 months. • Annual family income should not exceed Rs.l lakh. • Should be a resident of Delhi for last 3 years • Proof of residence will be as per existing Delhi Government schemes for the weaker sections. • Should be on regular anti retroviral treatment at any of the 9 ART Centres in Delhi. • Should have made the monthly visits (for taking the ART drugs) in the preceding year as documented in the ART Green card by the ART Centre nodal officer. 3.2 For assistance to double orphan children infected or affected by HIV/AIDS • Both parents should have died. • At least one of the parent should have died due to HIV/ AIDS • Proof of death of the parent due to HIV/ AIDS - report of ICTC or ART Centre • Proof of child being infected by HIV/ AIDS - report of ICTC or / ART Centre • The care giver of the double orphan children may be grandparents/close relatives (extended family) or foster care or institutional care. 3.3 Criteria for financial assistance to destitute children infected by HIV/AIDS and in Institutional care • Proof of child being infected by HIV/ AIDS - report of ICTC or / ART Centre • Proof of the child is destitute and in institutional care- by In charge of concerned Institution • The institution should be located in Delhi and registered under society registration act. 3.4 Miscellaneous conditions • If more than one family member in family are living with HIV/ AIDS and are on ART, each of the said PLHAs will get the benefit of the financial assistance. • The financial assistance to the double orphan or destitute children will be continued till they attain the age of 18 years. • Infected double orphan child/ or destitute child infected with HIV/ AIDS, as long as he/she gets assistance in this category, will not be considered for assistance in the category of people living with HIV/ AIDS. However, once the child attains the age of 18 years, he/she will be considered for assistance as a PLHA subject to fulfilment of the laid down criteria for the same.

50 4. Financial assistance package- 4.1 For people living xvith HIV/AIDS (PLHAs including infected children)- • Financial assistance to eligible PLHAs will be provided @ Rs. 1000/per month • The assistance to the eligible people living with HIV/ AIDS will be continued till they live. 4.2 For Double Orphans HIV infected Children/or Destitute HIV infected Children/ or Double orphan Children affected by HIV/AIDS Component of Support HIV Infected Double orphans / Double Orphans (Age- 0-18 yrs) or HIV Infected destitute children Children Affected by HIV/AIDS (Age- 0-18 yrs) -Financial support -Financial support in Rs. per in Rs. per month month Nutritional Support 1350/- 1350/- Transportation cost for availing medical services 200/- Skill Building & 500/- 400/- livelihood support to school going children Total 2050/- 1750/- 5. Operational Mechanism: 5.1 DSACS has prepared 4 type of application forms to enable beneficiaries apply for the scheme • Form PL-for Adult PLHAs on ART • Form CL-for children on ART • Form OCI- for double orphan / destitute children infected with HIV • Form OCA- for double orphan children affected by HIV/ AIDS First three forms have been provided to all 9 ART centres to be filled by beneficiaries and forwarded to DSACS for final scrutiny by scrutinizing committee which include besides DSACS officers, representative from WCD and Department of Health, Govt of Delhi. The form OCA has been has been provided to NGOs working with DSACS to enable orphan affected by HIV/ AIDS apply directly to Consultant (CSM), DSACS. On approval of scrutinizing committee, the proposal shall be placed before PD DSACS and Chairman DSACS cum Chief Secretary, Govt of Delhi for approval to release payment to beneficiaries. 5.2 The above said schemes of financial assistance will be implemented w.e.f. 1.4.2012 and monitored through the Delhi State AIDS Control Society. The administrative department for releasing the grants from Government will be the Department of Health & Family Welfare, Government of Delhi through new Plan Scheme for the year 2012-13. 5.3 Payment will be released on monthly basis by ECS into the bank account of the beneficiary (People Living with HIV/ AIDS >=18 years of age) or the guardian/ institution giver in case of orphan children infected or affected by HIV/ AID or destitute HIV infected children

51 5.4 The guardian/in-charge of the institution is to spend the amount received only for the Orphan and purpose of the said orphan/destitute child. Close monitoring for the same will be done by ANNEXURE the Delhi State AIDS Control Society. Vulnerable Children 5.5 The overall responsibility for monitoring and ensuring that the financial assistance reaches / benefits the identified beneficiaries would be of Delhi State AIDS Control Society. Following mechanism has been approved by PD DSACS:- Infected and Affected 5.5.1For People Living with HIV/AIDS on ART - Nodal Officer /Senior Medical Officer of the 9 ART centres of Delhi in various Govt Hospitals and 7 Positive people networks empanelled by HIV in Delhi with Delhi State AIDS Control Society will be entrusted with the task of monitoring the scheme under supervision of Consultant (CST), DSACS. 1. Name of the Scheme -Orphan and vulnerable children infected or affected by HIV/AIDS in 5.5.2For orphan Children Infected/affected by HIV/AIDS- An NGO Chelsea has been identified Delhi- situational analysis and state government's initiative of household economic for monitoring the scheme with overall supervision of DSACS. strengthening. 5.5.3Quarterly survival certificate of the PLHA getting financial assistance by the nodal officer of Anil K. Gupta*, Nidhi Rawat, Kuldeep Rai, Surendra Rana and Sabyasachi Chakraborty. the ART Centres certifying that the beneficiary is alive and receiving regular treatment. Delhi State AIDS Control Society, Department of Health & Family Welfare, Government of Consultant (CSM) has been designated in DSACS to give similar survival certificate of Delhi, Delhi 110085, India affected double orphan children. (Received 11 September2012: final version received9 October2012) HIV epidemic brought a terrible toll on children and families worldwide. There are 25 million orphans in India from all causes, of which approximately two million may be attributed to HIV/AIDS national AIDS control Organization (NACO), Government of (Dr. A.K. Gupta) India, recently started focusing on orphan and vulnerable children (OVC) through Officer on Special Duty/ APD children Affected by AIDS (CABA) Pilot Scheme in 10 districts of the country including one district of Delhi. The study was conducted to describe the situation of OVC infected or afflicted by HIV/AIDS in Delhi and the process followed by Delhi state AIDS control society (DSACS) to enable grant of financial assistance to OVC infected or affected by HIV/AIDS from Government of Delhi and its implementation thereafter with overall objective of household economic strengthening of people living with HIV/AIDS (PLHIV). The date during April 2010 March 2012 from nine antiretroviral treatment (ART) centers, CABA pilot scheme, and two institutions providing residential care to CABA in Delhi were analyzed. Total number of OVC in Delhi is estimated to be 1903 of which 766 are infected with HIV and 1142 are affected by HIV / AIDS. Through CABA pilot scheme, few OVC could be linked to existing Government Welfare Schemes due to lack of essential documents. Hence, DSACS planned a special financial assistance scheme for PLHIV to retain CABA in home-based care. In the first six months, 6.8% PLHIV, 11.7% children living with HIV/AIDS, 9% double orphan children infected with HIV/ AIDS, 9% double orphan children affected by HIV/ AIDS, and 68% destitute children infected with HIV/AIDS received benefit of the scheme. To maximize impact, efforts are being made to develop linkages of cash transfer households with other social service provider, strength, weakness, opportunity & threat (SWOT) analysis has been done with aim, to improve the scheme, a national policy to address the cause of OVC infected or affected by HIV/AIDS as need of the hour. Keywords: orphan and vulnerable children affected by AIDS: household economic strengthening, cash transfer scheme, home based care.

52 53 2. Introduction During the last 30 years of global HIV epidemic, an estimated 17.5 million children have lost one or both parents due to AIDS; 90% of these children live in sub-Saharan Africa (the U.S President's Emergency Plan for AIDS Relief [PEPFAR], 2006. Despite decline in new HIV infections worldwide and increasing access to treatment, the number of children affected by or vulnerable to HIV or left orphans remains high (United Nations joint programme on AIDS [UNAIDS], United Nations Children's Fund [UNICEF], United States Agency for International Development [USAID], 2004. There are 25 million orphans in India from all causes; however, the number of AIDS orphans is not known (United Nations Children's Fund [UNICEF], 2009. National AIDS Control Organization (NACO), Government of India, only recently stated focusing on orphan and vulnerable children (OVC) through Children Affected by AIDS (CABA) Pilot Scheme launched in 10 districts of the country (Ministry of Women and Child Development [MWCD] and National AIDS Control Organization [NACO], 2010; Pandve, Bhawalkar & Bhuyar, 2008). Moreover, Delhi is a low HIV Prevalent state; hence, the issue of OVC never received attention until June 2010 when National Commission for Protection of Child Rights referred few OVC infected or affected with HIV/ AIDS to Delhi State AIDS Control Society (DSACS) to ensure their nutritional support. In addition, preliminary date of CABA Pilot Scheme launched by NACO in North East district of Delhi in May 2010 disclosed various issues of OVC that needed to be addressed like nutrition, education, access to health and HIV services, legal and psychosocial support, etc. This motivated DSACS to assess situation of OVC in Delhi. This study was conducted to describe the situation of OVC infected or affected by HIV/ AIDS in Delhi and the process followed by DSACS to enable grant of financial assistance to OVC infected or affected by HIV/ AIDS from Government of Delhi and its implementation thereafter with overall objective of household economic strengthening of people living with HIV/ AIDS (PLHIV) to retain CABA in home-base care. 3. Material and methods An orphan is defined as a child who has lost one (single orphan) or both parents (double orphans) because of death and is under the age of 18 years, and a vulnerable child as the one who is at risk hue to deprivation of parental care, which may result from orphanhood, poverty, or economic shocks. An orphan and vulnerable child is defined as the one who is either orphaned, separated from their parents, lives with somehow dysfunctional parents or needs special protection measures beyond what can reasonably be expected to be provided by normal homes. This study targeted OVC resulting from HIV/ AIDS, defined as child (<18 years old) who has lost one or both parents due to HIV/ AIDS, is vulnerable on account of being HIV-positive, lives without adequate adult support under care of a grandparent or an elder sibling, or lives in institutional care (PEPFAR,2006). Computerized Management Information System (CMIS data of nine antiretroviral treatment (ART) centers in Delhi, implementing care and support treatment program for adults and children infected with HIV, from 1 April 2004 to 31 March 2012 were reviewed based on the number of adults registered in HIV care, initiated on ART, and died due to HIV/ AIDS and the number of children infected with HIV/ AIDS registered in HIV care in Delhi. Further, two non-government organizations (NGOs). Namely Naz Foundation and Drone Foundation, providing institutional care to HIV infected or affected orphan or destitute children in Delhi were contacted to provide information on CABA under their care.

54 Besides this, the data of CABA Pilot Scheme implemented by DSACS in the North East district of Delhi during May 2010- March 2012 were examined regarding the number of children 25 orphan vulnerable children available at DIC of Chelsea on the day of visit and 40 OVC in institutional care at Naz Foundation and Drone Foundation were examined for parental status (live or dead). HIV status, initiation of ART, status of education, etc. While the data of OVC was being gathered, on basis of need assessment, a request was made to Transport Department, Government of Delhi, and Metro Rail Corporation to provide free transport to adults and children infected or affected by HIV/ AIDS to access ART at an ART center of Delhi, Further, Department of Food, Civil Supplies and Consumer Affairs, Government of Delhi was requested to issue ration cards to Below Poverty Line (BPL)/Antyodaya Anna Yojna (AAY) PLHIV and affected families to ensure nutritional support. However both requests were not considered by respective departments. Hence, a need to provide some special financial assistance to PLHIV and children infected or affected by HIV/AIDS was felt. A State Technical Working Group (STWG) was constituted comprising of representatives of Department of Women and Child Development, Department of Education, Department of Social Welfare, Department of Health & Family Welfare, Department of Law, Justice & Legislative Affairs, and Department of Finance of Government of Delhi, representatives of national and international NGOs and networks of PLHIV Meeting of STWG was held in October 2011 to finalize unit cost per PLHIV and OVC, OVC wee categorized as follows: • Group I: Double orphan child infected with HIV/ AIDS • Group II: Double orphan child affected by HIV/ AIDS • Group III: Single orphan child infected with HIV/ AIDS • Group IV: Single orphan child affected by HIV/ AIDS • Group V: Children infected with HIV/ AIDS • Group VI: Children affected by HIV/ AIDS The STWG finalized following package for financial assistance to PLHIV and OVC: (1) HIV infected children and adults receiving ART - US $ 18.0 per month per person lifelong. (2) Double orphan or destitute children (<18 years) infected or affected by HIV/ AIDS - US $ 36.92 per month per child upto 18 years of age. (3) Double orphan affected by HIV/ AIDS - US $ 31.52 per month per child upto 18 years of age. (4) Double orphan/destitute HIV infected children on attaining 18 years of age to be provided financial assistance of US $ 18.0 per month per person lifelong. Details of the financial package are given in Table 1. The eligibility criteria for the scheme were as follows: (1) Category 1 (PLHIV and CLHIV) - Receiving regular ART in Delhi for at least last 1 year, resident of Delhi for the last three years, and annual family income from all sources should not exceed US $ 1800.

55 (2) Category 2 (orphan children infected with HIV/ AIDS) - Both parents died and at least one due to HIV/AIDS. (3) Category 3 (destitute children infected with HIV) - Child in institutional care on recommendation of child welfare committee of the Government of Delhi and receiving ART in Delhi of any duration. (4) Category 4 (orphan children affected by HIV/ AIDS) - Both parents die and at least one due to HIV/ AIDS and caregiver/institution should be in Delhi.

Table 1. Financial assistance package for OVC infected or affected byHIV/AIDS Amount of Financial Amount of Financial Assistance per month (US $) Assistance per month (US $) For double orphan/ destitute For double orphan children Component of support Children infected with HIV affected by HIV/AIDS Nutritional support 24.32 24.32 Transportation cost for awailing 3.60 0.00 Medical services Skill building and livelihood 9.00 7.20 Support to school going children Total 36.92 31.52

The scheme was approved by Chief Minister, Government of Delhi, as a plan scheme under the Department of Health & Family Welfare for implementation from 1 April 2012. Funds were received by DSACS in a separate bank account. The cash transfer was to be done directly into the bank account of the beneficiary by electronic transfer on monthly basis. A notice was issued in leading newspapers of Delhi in March 2012. Information about the scheme was displayed at notice boards of ART centers, and various PLHIV networks were involved in mobilizing the PLHIV and OVC to awail its benefit. Application forms were devised by the STWG for each category. Beneficiaries from categories 1-3 were advised to apply at ART center where receiving Anti Retroviral Treatment and applicants falling under category 4 were to apply directly ar office of DSACS. The application forms of eligible beneficiaries were forwarded after verification by Nodal Officer of each ART center to DSACS for release of financial assistance. The care givers, guardians, and institutions are required to ensure that OVC aged 0-5 years are taken for immunization and growth monitoring in the nearby Government health facility: OVC aged 6-18 regularly attend basic education in Government school; care givers ensure that financial assistance provided is spent on the care of the child and that the HIV­ positive OVC regularly visit ART center to ensure adherence to ART. Simultaneously, DSACS made efforts to develop linkages of cash transfer households with government service providers like education, health, social welfare and women and child development to maximize impact of the scheme.

56 Monitoring mechanism has been put in place. Beneficiaries in categories 1-3 will be mentioned by the ART staff during their monthly visit to the ART center, whereas beneficiaries in category 4 will be monitored by DSACS team through home visits.

Results On analysis of data nine ART centers of Delhi from 1 April 2010 to 31 March 2012, it was observed that 36,152 PLHIV were registered in HIV care, 17,997 were initiated on ART, and 10,822 are currently alive and receiving ART. Further, 1912 (11.36%) of the 16,819 adults on ART have died during last 8 years including 1504 men and 408 women. Further, 766 children infected with HIV are currently alive and on ART.

Table2. Data from CABA project (May 2010-March 2012) Indicator Male Female Total Number of HIV infected children enrolled 61 39 100 Number of HIV affected children enrolled 586 546 1132 Total number of infected + affected enrolled 647 585 1232 Number of orphan HIV infected children Maternal orphan 01 04 05 Paternal orphan 15 09 24 Double orphan 09 06 15 Number of orphan HIV affected children Maternal orphan 18 12 30 Paternal orphan 72 72 144 Double orphan 10 12 22

The results of the CABA Pilot Scheme are summarized in Table 2. As evident in the North East district of Delhi, 1132 CABA, including 203 single and 37 double orphans, were identified of 37 double orphans in home-based care, 28 were living with grandparents, six in extended families, and three under care of elder sibling. The performance of CABA scheme in respect of seven core indicators is presented in Table 3. As evident 10% CABA could be motivated for HIV test, 2.4% turned HIV infected and 93.3% HIV infected CABA were registered in HIV care. About 16.5% CABA underwent child centric counseling at CABA DIC for psychosocial support, a quarter of CABA accessed supplementary nutrition under Integrated Child Development Scheme and/or Midday Meal Scheme at Government School. 93 % of 129 CABA who dropped from school were readmitted. About 7.7% CABA were provided social protection through economic strengthening, 63.6% of 11 CABA needing legal assistance were provided legal support, and 0.9% CABA needing alternative care were provided institutional care at Naz Foundation and Drone Foundation. Two institutions providing residential care to CABA had 40 OVC infected or affected by HIV/AIDS including 30 HIV-infected and 10 HIV affected children. Twenty-five (62.5%) children in institutional care were destitute with unknown parental status. Table 4 depicts comparison between 40 OVC in institutional care and 25 double orphans

57 Table 3. Performance of CABA pilot scheme in the District of North East Delhi. in home-based care. As evident 93% HIV-positive children in institutional care were

Indicator Male Female Total(%) initiated on ART, whereas only 78% HIV-infected children in home-based care ( p < 0.001 ). Further, only 72% of OVC in home-based care were going to school, whereas 98% in Number of CABA enrolled institutional care (p < 0.0001 ). Total number of CABA enrolled 647 585 1232 1. Health services Regarding financial assistance scheme of Government of Delhi, in the first six months of the Number of newCABA motivated and tested for HIV through 69 55 124 (10) scheme, 6.8% (685 of 10,056) PLHIV, 11.7% (90 of 766) children infected with HIV/AIDS 9% (3 CABA scheme (0-14 year) of 33) double orphans infected with HIV/AIDS, 9% (2 of 22) double orphans affected by Number of new CABA detected HIV positive 12 18 30 (2.4) HIV/AIDS, and 68% (17 of 25) destitute children infected with HIV/AIDS have been passed Number of new HIV infected CABA registered for HIV care 11 17 28 (93.3) at ART center benefit of the scheme. 2. Psychological support On the basis of feedback received from ART staff and beneficiaries, it has been observed that Number of CABA underwent counseling sessions 121 82 203 (16.5) the financial assistance scheme has ensured that the OVC receive regular feeding and 3. Nutrition support clothing, attend school regularly, and access health care and ART, if indicated. Feeding and Number of CABA referred for supplementary nutrition 175 152 327(26.5) (ICDS, midday meal at school) clothing, attend school regularly, and access health care and ART, if indicated. Number of CABA receiving supplementary nutrition 132 152 284 (23) 4. Educational support Number of CABA dropped school (n=129) readmitted 51 69 120 (93) 5. Social protection/economic strengthening Number of families of CABA receiving sponsorship cash support 24 38 62 (5) Discussion Number of families of eligible CABA (n=35) receiving cash support 1 (2.9) under financial assistance scheme of Government of Delhi The HIV/AIDS pandemic brought a dramatic increase in the number of OVC due to parental Number of affected widows (n=168) with CABA 28 (16.7) illness and death (UNAIDS, UNICEF, USAID, 2004). Global situation of children orphaned facilitated for widow pension by AIDS is of concern, especially in Africa, which is estimated to have 14.2 million of the 17.5 Number of affected widows (n=4) with CABA facilitated for 4 (100) million world orphans due toHIV/AIDS (PEPFAR, 2006; UNICEF, 2009). In 2009, 31.3 pension after death of husband in government job million (29.2 - 33.7 million) of the estimated 33.4 million (31.1 - 35.8 million) PLHIV globally 6. Legal and redressal support were adults, 1.7 million adults (14-21 million) died of AIDS, and 2.7 million people (2.4 - 3.0 Number of families of CABA reported with legal issues 7 (63.6) million) were newly infected with HIV (UNAIDS, 2009). However, the number of AIDS- (n=11) facilitated for availing legal redressal services related deaths worldwide is steadily decreasing from a peak of 2.2 million in 2005 to two 7. Alternative care Number of CABA placed in institutional care for special need 5 6 11 (0.9) million in 2009 due to positive impact of ART and 30% increase in number of people initiated (if child is orphan/destitute) on ART in 2009 (UNAIDS, 2009; World Health Organization [WHO]. 2010b). In addition 2.1 million children below the age of 15 years are living with HIV/AIDS (UNAIDS, 2009). NACO estimates that India has 2.3 million PLHIV (Technical Report India HIV Estimates Table 4. Comparing OVC in institutional versus home based care. [NACO], 2010). Further in India, 57,000 children are infected annually but there are no total estimates: however, 64,000 children living with HIV/AIDS (CLHIV) are currently registered OVC in institutional care OVC in home based care Indicator (n=40) (n=25) in HIV care and 22,837 are on ART. The high prevalence states are concentrated in the south, namely Tamil Nadu, Andhra Pradesh, Karnataka and Maharashtra, and in the northeast, Age (mean ± SD), range (years) 9.75 ± 3.75 (2-17) 9.96 ± 3.74 (3-18) namely Nagaland and Manipur. Since roll-out of ART program in 2004 (NACO, 2010), there M -24,F-16 M -12,F-13 Sex has been a steady decline in adult HIV prevalence (0.41% in 2000 to 0.31% in 2009) and in H IV Status 30 HIV positive 9 HIV positive AIDS-related deaths (1.72 lakh deaths in 2009 compared to 2 lakhs in 2006). However 20.76 O n ART 28 (93.3%) 7 (77.8%) Duration of ART (mean ± SD) 32.81±15.02(2-60) 27.33±14.65 (7-48) lakh people are estimated to have died of AIDS in the last decade (Annual Report 2010-11 range (months) [NACO], 2011). Going to school 39/40 (97.5%) 18/25 (72%) The total number of OVC in Delhi is estimated to be 1908 of which 766 are infected with HIV Orphan status Destitute-25 Double orphans-25 and 1142 are affected by HIV/AIDS. Center for Global Health & Development (CGHD), Double orphan- Boston University examined demographic and health characteristics of OVC at three NGOs 8 Single orphan- in India, namely Community Health Education Society (Chennai), Sneha Charitable Trust 7 infected

58 59 (Bangalore), and Chelsea (district of North East Delhi) and indentified 371,84 and 652 OVC, respectively, under care of these NGOs (USAID, 2012) Although there are no government figures in the country for the number of OVC infected of affected by AIDS, World Bank estimates suggest that the number of children in India orphaned by AIDS are above two million (Pandve et al.. 2008). Of this 1908) OVC have been identified in Delhi, a low HIV prevalent state of the of the country, which calls for need to develop a policy for AIDS orphans for their treatment as well as for the rehabilitation. Sub-Saharan countries have shown their commitment for AIDS orphans (UNICEF, 2008). PEPFAR programme and UNICEF has established a package of services needed to be provided to OVC infected or affected by HIV/ AIDS (PEPFAR, 2006; UNICEF, 2009; World Bank Africa Region & World Bank Institute, 2005). However, through CAB A Pilot Scheme, few OVC in home-based care could be linked to existing Government Welfare Schemes due to lack of desired documents/certificates to enroll for these schemes and discriminatory attitude of some Government officials towards PLHIV. Further, due to fear of stigma and discrimination, many CABA/PLHIVs did not like to avail the benefit of these schemes. Since provision of the complete OVC package (PEPFAR, 2012) appeared a challenging task, DSACS planned a special scheme for household economic strengthening of PLHIV that was approved by Government of Delhi for financial assistance to double orphan/ destitute children infected with HIV/ AIDS or affected by HIV/ AIDS and PLHIV including all adults and children on ART who fulfil criteria with no limit to the number of clients in the family receiving the grant from the present or any other scheme of Government. However, only 6.8% PLHIV, 11.7%, CLHIV 9% double orphan children infected with HIV/AIDS, 9% double orphan children affected by HIV/ AIDS, and 68 % destitute children infected with HIV/ AIDS could be passed benefits of the scheme. Impact assessment of Social Cash Transfer Scheme (SCTS) in some high HIV prevalent regions of sub-Saharan Africa like Malawi and Zambia have shown positive outcomes on the outreach and impact level of the program (Adato & Bassett, 2008; STOP AIDS NOW, 2008). Delhi has low HIV prevalence and it would be interesting to compare the results of the schemes with SCTS of Malawi and Zambia. However, the short-term impact of the financial assistance scheme has been encouraging. DSACS performed Strengths, Weakness, and Opportunity & Threat (SWOT) analysis of the scheme for improvement in future. The main strengths of the financial assistance scheme of Government of Delhi are as follows: first, corruption is unlikely due to registration of beneficiaries directly at ART centers where registered in HIV care and mechanism of cash transfer directly into the bank accounts of the beneficiaries/ caregiver, second only clients on one year regular ART are eligible for the scheme which is likely to enhance ART registration and ARV adherence; third, all essential documents are verified by ART Nodal Officer (Government Doctor) followed by further examination by State-Level Scrutinizing Committee consisting of representatives from Department of Health & Family Welfare, Department of Women & Child Development, Department of Finance, and officers of DSACS, fourth, OVC living with grandparent or extended families may now not require institutional care and there will be no sibling separation; and fifth, the scheme is directly under control of staff working under HIV/ AIDS Control Program already sensitized about the issues of OVC; hence risk of stigma and discrimination will be negligible.

60 Further, on intervention of DSACS, linkages with Department of Health & Family Welfare, Government of Delhi, were also established for stigma and discrimination free environment, free medical tests, and provision of blood or blood products free of cost and without replacement for all adults and children infected and children affected by HIV/ AIDS in Delhi Government hospitals. Also, on request of DSACS, Department of Education, Government of Delhi has issued directive to all schools of Delhi to not deny admission or remove any child infected or affected by HIV/AIDS or disclose HIV status of the child to facilitate implementation of Right of Children to Free and Compulsory Education Act 2009. The main weaknesses in the scheme are first, the process of linkages of cash transfer households with existing government social welfare schemes to maximize impact have been slow due to lack of desired documents to register for such schemes. DSACS has therefore set up a cell to assist these households in preparation of required documents. Second, in the initial period of launch some applicants faced difficulty in getting income certificate from Deputy Commissioner's (DC) offices as DC offices were providing individual income certificate whereas requirement of the scheme was family income certificate. On intervention of DSACS Divisional Commissioner, Government of Delhi issued directions to all DC offices to issue family income certificates to needy PLHIVs and OVC. Third, in order to prioritize resources, initially single orphan children affected by AIDS were not included in the scheme. However, all OVC infected of affected by HIV/ AIDS may be included in future if the scheme operates effectively. Fourth, eligibility criteria for CLHIV of minimum one year ART to enroll for the scheme probably kept many children away from getting the benefit of the scheme. Fifth, most of the caregivers of double orphan children infected with HIV/AIDS failed to produce document confirming death of one of the parents due to HIV/ AIDS, which was one of the essential eligibility requirement. Consequently, few CLHIV and double orphan children infected by HIV/AIDS could be enrolled for the scheme. Since early initiation of ART in HIV infected infants and children save many children, WHO has issued guidelines to start anti retroviral treatment to all HIV infected children under two years of age irrespective of CD4 count (WHO, 2010a); therefore, to ensure adherence, it will be essential to enroll all CLHIV for the financial assistance scheme irrespective of the duration of ART. Also, since more than 90% of pediatric HIV infections occur due to mother to child transmission, it may not be necessary to have HIV status of one deceased parent of double orphan child infected with HIV to enroll for the scheme. DSACS has therefore planned to take up these issues in the next Cabinet Meeting of Government of Delhi to modify eligibility criteria of CLHIV and double Orphan children infected with HIV/AIDS. Further since OVC in Institutional care had high probability of getting better education and health service than those in home- based care headed by elderly, the issue of linkages of such household with existing government Schemes also need to be addressed to maximize impact of the cash transfers. There appears to be no major threat to the scheme, since none of neighbouring states of the country have rolled out any financial assistance package for PLHIV. There is a potential threat of people migrating to Delhi to avail the dual benefit of ART and financial assistance hence. ART centers have been instructed to confirm residential address of all PLHIV at the time of registration in HIV care. Karnataka is the only other state of the country to have cash transfer scheme benefitting over

61 2100 OVC (Cunningham.2012). The Karnataka Cash Transfer Scheme and CABA pilot scheme, launched by NACO in five districts of India were recently evaluated by a team from CGID Boston University under USAID funded India OVC project (USAID.2012). Currently, most of the OVC programs in high HIV prevalent states of India are implemented through NGOs USID (2012) on evaluating the performance of various OVC projects in the country has provided evidence that there is a need to frame national policy for OVC in India NACO, Ministry of Health & Family Welfare (MOHFW). Government of India has been suggested by various stakeholders during consultations to include OVC policy as an agenda in the upcoming fourth phase of National AIDS Control Program which we also recommend based on situational analysis of OVC in Delhi. Further provision of cash transfers to poor and constrained household is one step toward empowering the households to care and support the children. Simultaneously, linkages with social service providers should be established to make best use of cash transfers. This would require national commitment, coordination between ministries and also between national and state level.

References Adato, M., & Basselt, I.. (2008). Joint Learning Initiative on Children and HIV/ AIDS. What is the potential of cash transfers to strengthen families affected by HIV and AIDS? A review of the evidence on impacts and key policy debates. Retrieved October 4, 2012 from http: / / programs.ifpri.org/ renewal/pdf/JLICA CASH TRASFERS,PDF Cunningham T. (2012). Karnataka cash transfer programme. Retrieved December 10.2011 from http://www.bu.eduhd/files/2012/01 /3-Karnataka-Cash-Transfer-Scheme-India. OVC- Dissemination-Meeting-1 -10-12.pdf Ministry of Women and Child Development (MWCD), & National AIDS Control Organisation (NACO). (2010). Operational guidelines for children affected by HIV/ AIDS. Policy frame-work for children and AIDS. Retrieved June 4 2011 from http://www.naconline.org/upload/ Publication/Treatment%20Care%20and%20support/policyframework%Aug_31.pdf National AIDS Control Organisation (NACO), Govt, of India (2010). Technical report-Indian HIV estimates. Retrieved Janury 7, 7, 2011 from http://www.naconline.Org//upload/ Publication/M&E%20Surveillance,%20Research/Technical %20Report% on %20HIV% 20 Estimates%202010.pdf National AIDS Control Organisation (NACO), Govt, of India (2011). Annual Report 2010-11. Retrieved January 7, 2011 from http://www.nacoonline.org/upload/REPORTS/ NAC07o20Annual%20Report%202010-ll.pdf Pandve. H.T. Bhawalkar, J.S. & Bhusyar P.A. (2008), AIDS orphans: An ignored issue in India. Indian Journal of Sexually Transmitted Diseases, 29,47-48.

62 National AIDS ANNEXURE Control Programmes r e

National AIDS Control Programme I (1992-1999) The objective of NACP-I (1992-1999) was to control the spread of HIV infection. During this period a major expansion of infrastructure of blood banks was undertaken with the establishment of 685 blood banks and 40 blood component separation. Infrastructure for treatment of sexually transmitted diseases in district hospitals and medical colleges was created with the establishment of 504 STD clinics. HIV sentinel surveillance system was also initiated. NGOs were involved in the prevention interventions with the focus on awareness generation. The programme led to capacity development at the state level with the creation of State AIDS Cells in the Directorate of Health Services in states and union territories.

The popular Ganesh festival in Pune, Maharashtra, being used to spread awareness about HIV among the masses.

National AIDS Control Programme II (1999-2006) During NACP-II (1999-2006), various new initiatives were undertaken and the programme expanded in new areas. Targeted Interventions were started through NGOs, with a focus on High Risk Groups including commercial sex workers (CSWs), men who have sex with men (MSM), injecting drug users (IDUs), and bridge populations (truckers and migrants). The package of services in these interventions included Behaviour Change Communication, management of STDs and condom promotion. The School AIDS Education Programme was conceptualised to build up lifeskills of adolescents and address issues relating to growing up. All

63 channels of communication were engaged to spread awareness about HIV/ AIDS, promote safe behaviours and increase condom usage. Voluntary counselling and testing facilities were established in healthcare facilities to promote access to HIV counselling and testing. The interventions for prevention of parent to child transmission were also started. The country initiated roll out of free antiretroviral therapy in 2004 in selected hospitals. This led to a dramatic shift in the fight against HIV/ AIDS from taking care of those dying to providing care, treatment and support to people infected and affected with HIV to live healthier lives. Development of indigenous vaccine and research on microbicides were some initiatives in HIV research. Apart from this, some policy initiatives during NACP-II included National AIDS Prevention and Control Policy, National Blood Policy, a strategy for Greater Involvement of People with HIV/AIDS (GIPA) and National Rural Health Mission (NRHM).

Community Care Centre (CCC) Care, Support and Treatment (CST) is an integral component of the National AIDS Control Programme. Under the National AIDS Control Programme Phase - II, 122 Community Care Centres were set up to provide treatment for minor opportunistic infections (OIs), side effects of ART and to provide psychosocial support through sustained counselling. CCCs were intended to function as a bridge between hospital and home-based care and hence envisaged as stand-alone short-stay homes for PLHA. These were not linked to other activities of the programme. The introduction of ART in 2004 brought about a change in the role of the CCCs. They transformed from stand-alone short-stay home to playing a critical role in enabling PLHA to access ART as well as providing monitoring, follow-up, counselling support to those who are initiated on ART, positive prevention, drug adherence, nutrition counselling, etc. Source: Operational Guidelines for Care & Support Centres, Department of AIDS Control (NACO), Ministry of Health and Family Welfare, December 2013

A community care centre in Ahmadnagar, Maharashtra A community care centre for children (CCCC) in Pune

64 A National Council on AIDS chaired by the Prime Minister and consisting of 31 ministries, seven chief ministers, civil society representatives, positive people's network and private sector organisations was constituted with the following objectives: • To mainstream HIV/AIDS issue in all ministries and departments by treating it as a development challenge and not merely a public health problem. • To provide leadership to mount multi-sectoral response to combat HIV/ AIDS in the country with special reference to youth, women and the workforce. Budgetary Allocations by the Govt The Govt, given the concern about HIV, has been raising the budget allocated for NACO. As highlighted in the Economic Survey 2004-05, there was a need to address the problems arising from the prevalence of T.B. and HIV/ AIDS. Annually, around 4.17 lakh people in the country die because of T.B. By the end of 2003, around 51 lakh people were living with HIV/ AIDS. Almost 1 out of every 100 adults (age groupl5-49) suffers from HIV/ AIDS. The Government responded positively to these concerns and raised the plan allocation for NACO from Rs. 232 crore in 2004-05 to Rs. 476.5 crore in 2005-06 (Expenditure Budget Volume 2). The Government of India's budgetary allocation for HIV for the year 2012-2013 for the Department of AIDS Control was Rs 1,700 crore towards expenditure for care, support and treatment of HIV infected people. These were allocated for the following: Rs 722.12 crore as grants in aid to State AIDS Control Societies (towards prevention activities like targeted intervention, sexually transmitted infection, blood safety, mainstreaming, surveillance and link worker scheme) in comparison to Rs 389.94 crore allocated in 2011-2012. Rs 487.29 crore as procurements (procurement of drugs, kits, consumables and equipment) as opposed to previous year's Rs 492.43 crore. Rs 234 crore for supply of Condoms Rs 170 crore was earmarked for schemes and projects for the benefit of North East region and Sikkim as per guidelines of the Planning Commission The government had chalked out a Rs 8 crore plan to set up four blood banks at Chennai, Delhi, Kolkata, and Mumbai and a plasma fractionation centre. National AIDS Control Programme III (2007-2011) Under NACP III, various development programmes like the National Rural Health Mission, Reproductive and Child Health (RCH) programme and the Revised National Tuberculosis Control Programme (RNTCP) were integrated to prevent HIV transmission. Among the preventive services, awareness generation, condom promotion, prevention of parent to child transmission, increasing ICTC services, promotion of voluntary blood donation and access to safe blood were included. The policies also had guidelines on Targeted Interventions (TI) for high risk groups like IDUs, MSM, FSWs etc. Apart from this, policies have extensive guidelines on the management of common opportunistic infections, malignancies among adult/adolescent PLHA and operational guidelines for ART centres to standardise ART services across the country. The National Policy on Blood Banks ensures adequate supply of safe blood and blood components.

65 The NACP IV working group on care and support had identified the following gaps in care and Keeping in mind the challenges in care and support in NACP III, the component of Care, Support support services provided under NACP III : and Treatment (CST) has been strengthened under NACP IV with the overall goal to provide 1. Unmet care and support needs: Although the access to clinical services has improved universal access to comprehensive, equitable, stigma-free, quality care, support and treatment significantly in NACP III, not all infected individuals receive comprehensive and holistic care services to all PLHIV using an integrated approach. and support, especially where psychosocial needs are concerned. There are limited strategies Based on the recommendation of NACP IV working group on care and support, the strategy of to mitigate the impact for PLHIV, children and their families. Additionally, the coverage of implementation of the care and support has been completely revamped to ensure cost PLHIV from high risk groups and PLHIV living in rural areas and hard to reach areas with effectiveness and sustainability. In line with the priorities of NACP IV, medical services have care and support services is inadequate. Though there are many service delivery points for been integrated into the existing health system and simultaneously efforts are being made to different components in NACP III, the linkages and referrals among various service strengthen capacity of the existing health system for effective delivery of care, support and components such as Drop-in-centre (DIC)/District level network (DLN), ART, ICTC, and TI treatment related services. are inadequate. Under NACP IV, Care & Support Centers (CSCs) are being established and linked to all ART 2. Inadequate utilization of existing schemes and structures: Though the utilization of centres across the country. The CSCs will serve as a comprehensive unit for treatment support for services has been improving over the years, the proportion of HIV infected women accessing retention, adherence, positive living, referral, linkages to need-based services, and strengthening services continues to be a challenge due to stigma. The health care workers' sensitivity is low. an enabling environment for PLHA. This will be part of the national response to meet the needs of There is a lack of clarity of the roles of link and outreach workers. It is also not clear as to who PLHA, especially those from the high risk groups, and women and children infected and affected they are accountable to. Their outreach services are offered in a vertical manner requiring by HIV. strengthening of co-ordination. Mechanisms for referral are weak and inadequate. CSCs will be run by civil society partners including District Level Networks (DLN) and NGOs, 3. Lack of monitoring and evaluation (M&E) systems to measure care and support: The selected on the basis of their track record of working successfully with the local PLHA current M&E system captures information on clinical services. However, it does not capture community. indicators of care and support or services provided to HRG. Additionally, there are no The CSCs, under NACP IV, are supposed to play a significant role in improving access to services indicators that capture type and quality of services. for Children Affected by AIDS (CABA). The details are provided in the Operational Guidelines 4. Sub optimal use of human resources: Currently for activities involving community for Care & Support Centres below. 3334 mobilization and coverage of PLHIV, the same PLHIV is reached by multiple ORWs from different components such as TI NGOs, CCC and DIC, resulting in sub-optimal utilisation of scarce resources. National AIDS Control Programme IV (2012-2017) The phase IV of the National AIDS Control Programme (2012-2017) was launched in February 2014 after a delay of nearly two years. NACP-IV aims to accelerate the process of epidemic reversal and further strengthen the epidemic response in India through a well-defined integration process over the five-year period. It consolidates the gains of NACP-III and has a budget outlay of Rs 14,295 crore. The total government support is Rs 11,394 crore, 63 percent of the total share. The eligibility for receiving ART has been raised from CD4 level of 350 to 500 to ensure positive people are initiated on treatment at an early stage, besides the introduction of the third line ART for those who fail on second line ART. Some of the key priorities of NACP IV are preventing new infections, PPTCT, focussing on IEC (Information, Education and Communication) strategies for behaviour change in high risk

groups and creating awareness among general population. 33http://www.cbgaindia.org/files/budget_responses/RESPONSE%20TO%20UNION%20BUDGET%202005-06.pdf Some of the new initiatives under NACP-IV include differential strategies for districts based on 34 http://healthopine.com/indian-healthcare-budget-allocation-for-the-year-2012-2013/ “Operational Guidelines for Care & Support Centres, Department of AIDS Control (NACO), Ministry of Health and Family Welfare, data triangulation with due weightage to vulnerabilities, scale up of Opioid Substitution Therapy December 2013 for Injection Drug Users, Female Condom Programme, Multi Drug Regimen for PPTCT in “Adapted from report of NACP IV working group on Care, Support and Treatment for PLHIV “Operational Guidelines for Care & Support Centres, Department of AIDS Control (NACO), Ministry of Health and Family Welfare, keeping with international protocols, establishment of Metro Blood Banks and Plasma December 2013 Fractionation Centre.

66 67 Operational Guidelines for Care 6.2 Special Provision for Children under CSC ANNEXURE The resting/ relaxing place can be made child-friendly. One of the walls of the rooms/ hall can be & Support Centres, Department painted with images of cartoons, nutritional pyramid and fruits and vegetable pictures. This room should also have indoor play materials for children who are visiting the centre alongwith of AIDS Control (NACO), their parents or care providers. Indoor play materials can consist of toys (both for girls and boys), stuffed toys, etc. Materials highlighting spread of HIV/AIDS and associated illnesses may be Ministry of Health and Family better avoided among the display materials in this space of the CSC as this can further cause Welfare, December 2013 stigma against children. The key strategies of catering to children and adolescents needs through CSC are as follows: 6. Role of CSC in Improving Access to Services for Children Affected by AIDS (CABA) 1. Provision of child -friendly counseling services 6.1 Services for CABA - In order to make the children comfortable, counseling room will be made child friendly by decoration, using counseling techniques such as storytelling and/or by As per National AIDS Control Programme, Children Affected by AIDS (CABA) refer a child (below 18 years of age) who using other visual aids. - Counseling services will be address children specific issues such as dealing with HIV • Has any one or both parents or immediate care provider/s living with HIV status, hygienic behaviours, healthy lifestyles, playing safely, dealing with stigma • Has lost one or both parents/guardian/immediate care provider or siblings to AIDS and discrimination by friends, etc. • Is living with HIV - Parent/ guardian of the CABA will also be provided with counseling, addressing The needs of the children living with HIV and AIDS are unique, dynamic and differ a lot from their concerns in terms of handling difficult circumstances with CABA. They also adults. Hence alongwith addressing the medicine needs, other needs of children should also be will be counseled on protecting CABA from sexual/physical harassment at home, addressed to reduce the mortality and morbidity among children. Although medical care for school and community. children is available free of cost at the ART centres, other needs such as education, nutrition, 2. Need-based home visit for CABA psychosocial support, shelter and family care still remain a challenge. - Line list of CABA generated from enrolment register will be considered on priority The potential impact of HIV on children could include basis for the outreach plan; reaching out to CABA for follow ups will be given special • Decline in health status focus. • Depression and anxiety - Those CABA who are not coming to CSC will be prioritized for home visit by CSC • Stigma (in family, socialization, schooling) team to ensure need-based services are being provided through referral and linkages to appropriate service centres. • Caring for sick and diseased parents - Identification of new CABA will be one of the priority tasks for the outreach workers • Increased demands for household work and labour and peer counselors during field visit for referral of ICTC and ART. • Drop-out from school due to disease, proverty or to supplement family income 3. Support group for children • Migration As CSC will be facilitating formation of different types of support groups in order to • Homelessness provide a safe and comfortable space for various specific groups, a separate group for • Loss of property inheritance CABA will also be formed. Support group meetings for CABA will be facilitated As a response to the above mentioned concerns related to children affected by AIDS, Care and wherever feasible. The support groups will contribute to creating awareness and Support Centres will be ensuring a child friendly environment and atmosphere to make CSC motivating PLHIV to access health services. conducive for CABA to access services at the CSC. CSC will also facilitate linkages with different 4. Support group for adolescent boys and girls government departments, corporate sectors and FBO wherever feasible to meet the specific In order to encourage adolescent boys and girls to promote a positive environment for a needs of CABA for their overall health improvement, education and other services. CSC may also healthy lifestyle, "Buddy Groups" will be organized and facilitated wherever possible. mobilize additional resources to provide basic requirement of CABA at the CSC such as For example, buddy groups are groups for boys and girls of similar age, education, socio­ nutritional supplements, educational items like books, drawing materials, toys, blocks for economic status, or similar living circumstances (such as Living with HIV and on ART, learning, etc.

68 69 children of FSWs, adolescent sex workers, IDU, etc.). Such buddy groups will help documents necessary to ensure access to education will be supported by CSC team. members to be comfortable discussing issues related to safe and healthy lifestyle, The necessary documentation will be facilitated in coordination with local treatment adherence such as ART, DOT, STI etc. They will also promote abstinence form authorities like the talati-taluka officials. The CSC team will especially work with unwanted sexual practices/ relationship, ability to deal with negative peer pressure etc. district education officer and share information on children dropped out of school Through these buddy groups, age appropriate and group specific information will be for appropriate directions. provided from time to time. These buddy groups will also provide a very safe space for d. For access to social schemes and entitlements: Widow and orphan-headed families the members to share their concerns/ issues which may be very personal and need special support to protect children vulnerable to exploitation. In extreme cases confidential and thus enhance a valuable learning opportunity and also help create an it might be necessary to provide alternative care for some children. This will be done effective care and support system amongst the group members. Wherever feasible at by informing families on available child protection services, schemes and structures least once in a month, CSC should organize buddy group meetings for those CABA e.g. DCPS and CWC. Establishing and strengthening coordination mechanisms with registered at the CSC. DCPS and CWC to refer children and develop protection plans according to the best 5. Referral and linkages interest of the children are among the priorities of CSC. The CSC team will also support families with necessary documentation and guidance support to access the a. For access to health care provision: welfare schemes such as: - Pre-ART registration at ART centres: On priority basis, CSC team will give special - Getting ration cards, Below Poverty Line (BPL) and Antyodaya Anna Yojana (AAY) efforts to identify any child newly diagnosed and will be ensured successful linkages cards. Where eligible, CLHIV on ART will be ensured access to special schemes such to ART centre for Pre-ART registration. Accompanied referral will be provided as fortified nutrition from ART centres. whenever necessary. - Coordinating with the SC and ST Corporations to access loans for families who fall in - Management of Ols and other general health care provisions: Special emphasis will the list of beneficiaries. be given through counseling, home visits and community outreach activities to - Linking families to income generation schemes available at village level, such as identify children living with HIV with signs and symptoms of opportunistic National Rural Employment Guarantee Scheme (NREGS). The CSC team will infections and or any other health care needs. Children will be supported for OI identify families that are in need of this support and work with Panchayats to give prophylaxis and treatment adherence through regular visits, use of mobile phone priority to these families to access NREGS. technology and other innovative methods such as "buddies' follow-up", which would basically mean two or more families/ children who need a service will be e. For access to legal services: The CSC team will coordinate with existing state and clubbed to ensure support. Wherever possible, CSC team will coordinate with district level legal aids cell/ unit in order to provide necessary legal support to PPTCT NGOs, Link Workers, AWWs, ASHAs, ANMs, etc. to ensure coverage of CABA. Common situations needing legal aid could be denial of property rights, CABA in remote areas and link them up with the necessary service delivery units sexual abuse and most importantly children being terminated from schools. (adolescent STI clinics, DOTs and any other general hospitals for regular health Coordination mechanisms will be established with District Child Protection Scheme check-ups and treatment). and Child Welfare Committees to refer children for support and assistance. Using the platform of support group meetings, members will be educated on legal rights b. For access to supplementary nutrition: The CSCs will ensure that children affected and other related issues by mobilizing resource persons from district level legal by AIDS are linked to sources of supplementary nutrition such as the mid-day meals units/cells. under Integrated Child Development Scheme (ICDS). Along with this parents/ care 6. Strengthening system for sustainable care and support to CABA givers of children will be educated through regular support group meetings, counselling of parents on balance diet and low cost nutrition from loacally available a. Empowering families of CABA: At least once a month, support meeting should be resources CSC will give special emphasis to mobilize any form of support be it in held for parents/ guardians of CABA to address issues/ concerns related to dealing kind, cash and volunteers to educate children and their parents on nutrition. with CABA. If necessary parenting skills to handle critical behaviours of CABA should be imparted by mobilizing locally available expertise. As CSC does not have c. For access to education: As a part of CSC's sensitization and advocacy initiatives, the night shelter/ stay facility, CSC team will empower relatives/ guardians of CABA following measures will be undertaken: for foster care. In emergency or crisis situations where short stay/ night stay is - Children below 14 years will be helped to access primary education from Sarva required, CSC will link them to the existing shelter home for children in general and Shiksha Abhiyan through referral and coordination with the education system. or with the orphanage/care homes for children living with HIV supported by the - The families of CABA who are in need of support to get the basic citizenship state government.

70 71 b. Strengthening community systems to reduce HIV/AIDS related stigma and discrimination, especially towards CABA ANNEXURE As a part of the sensitization and advocacy activities to be conducted by CSC team, advocacy should be conducted particularly focusing on local service delivery and Government Schemes governance systems such as ASHAs, Anganwadi workers, teachers, village health committees and panchayats addressing CABA issues. and Programmes At district level, CSC team should establish partnership with District Child Protection Society, Child Welfare Committee, and positive networks to support the affected families. CSC team should participate in the coordination meetings at community with There are a number of government schemes and programmes for the welfare of children in the panchayats, AWW, ASHA, teachers and village health committee organized by the country and they ensure that a child living with HIV is entitled to the same privileges, concerned department. entitlements and benefits as any other child. The schemes and programmes for infected and affected children in Delhi have been listed earlier. Some of the others are enlisted below. Integrated message related to CABA into the ongoing/existing activities under RHC program, rural youth development program at village and district level. Karnataka Cash Transfer Scheme 37, 38 Special events such as World AIDS Day and Children's Day observations can also Karnataka is one of the six high prevalence states in the country with an HIV prevalence of 1%- include such messages. 1.9% across the 30 districts in 2009. With most orphans and vulnerable children receiving no Coordination mechanisms with DAPCUs (along with CSCs) and DCPS will be support, despite their needs, the Karnataka Cash Transfer was designed with a community- ensured. based targeting process. Transfers are targeted to poor households with children aged 0 to 18 years of age who are infected or affected by HIV/AIDS and are in need of food, medicine, Along with SR team at the state level, coordination and linkages with SACS, NRHM, healthcare, and/or support for education. WCD and Department of Education will bring issues of children and families to the notice of respective line departments. The community health workers conduct Family Health Assessments and identify eligible children and families. The families must be registered with a clinic providing ART to be considered for the transfer. During clinic visits, the family must consent to have a community health worker visit their home to conduct an assessment. If a family and child are affected by HIV/AIDS, but were not registered with the ART clinic, they would not be assessed. Once assessed and recommended for the transfer, at the local level, Village Health Committees, Gram Panchayats, and the Child Development Programme Officer must approve the family for the scheme. At the District level, the District Officer from the Department of Women and Child Development and the District's Executive Officer either approve or deny families for the transfer. Funds are transferred to recipients' bank accounts and the family of the children may receive upto Rs. 800 per month per child. The objective of the Cash Transfer Scheme is to retain CABA within the community and ensure their reintegration into the society while enabling the provision of comprehensive holistic care and support to them. It wants to reduce the HIV stigma and discrimination. As mentioned above the programme is being implementedin coordination with WCD, the nodal department; KSAPS which shares information of families registered at ART or ICTC centers; KHPT/ EH who help in training, conducting surveys, data analysis and preparation of reports. The district level NGOs coordinate in conducting surveys and developing contacts with the families. The Village Health Committees leads the implementation between the families and the departments and monitors the child's progress.

72 73 The following benefits are extended to the families taking care of CABA. 1. Sponsorship: Rs. 650 per month per child for extended families not capable of supporting ANNEXURE CABA. Parliamentary 2. Foster Care: Rs. 750 per month per child for volunteers identified to provide residential care for CABA. Interventions 3. Travel: The actual travel expenses for CABA and guardian to ART centre are reimbursed as required. 4. Education: In June an annual benefit of Rs. 500 is provided for notebooks and other materials like footwear. Parliamentarians' Forum on HIV/AIDS (PFA) 37 3839 Earlier the actual medical expenses were borne by the govt but with the Govt of Karnataka Health The Parliamentarians' Forum on HIV/AIDS (PFA) is a "Forum of concerned Parliamentarians Department allocating Rs. 2 crores for medical needs for all CABA in the state, it has been who have resolved to act constructively to tackle the issue of HIV in the country. This Forum is removed. uniquely placed by virtue of its unique composition and Parliament, to play a major role in Among the strengths of this Scheme, the govt supports it and the child remains at home with no advising and influencing the attitudes of the executive and the legislature towards this dreaded sibling separation. It is community driven, bottom up design and helps maintain the dignity of disease. As HIV/AIDS is threatening the health, productivity and socio-economic structure of the child and the family. our country, PFA has been set up to involve Members of Parliament, irrespective of party Among the weaknesses the Scheme requires a high level of sensitisation and may lead to affiliation in the framing of appropriate laws and policies to tackle this disease." disclosure of HIV status, stigma and discrimination. The many layers of people involved could In March 2000, Mr. Oscar Fernandes, a Member of Parliament, organized a group of political and lead to bureaucratic delays. At the grassroots level, the AWW, ASHA and ANM have limited youth leaders across party lines and initiated discussion on the HIV/AIDS situation in India and education, low pay and are burdened with multiple responsibilities. If the families are not what they could do to strengthen the country's response. This followed by discussions with Dr. registered at the ART centres, the children might be overlooked. Families have to wait for a long Peter Piot, Executive Director of UNAIDS, highlighted the information gap. "Parliamentarians time from the assessment to the cash transfer. identified the need for receiving accurate information on HIV/AIDS in their Subsequently, similar cash transfer programmes for children affected by HIV/AIDS have been states/constituencies and also guidance on specific actions that they could take in responding to initiated in Delhi and Tamil Nadu. HIV/AIDS." The need for developing a political advocacy strategy that would engage the Parliamentarians and other political leaders at the national and state level was felt and the working group started engaging with NACO and UNAIDS. Understanding the magnitude of the issue in the country, visiting projects, meeting activists and understanding the key challenges facing those living with HIV, individual MPs even provided assistance and financial support from their local area development fund to support HIV/AIDS programmes. Formally constituted in May 2002, the Parliamentarians' Forum on AIDS has over 300 members dedicated to provide leadership to the HIV/AIDS response in the country.

37A Qualitative Assessment of the Karnataka Cash Transfer Phase III Report: Early Impacts of the Karnataka Cash Transfer on Children and Families, September 26, 2012, Boston University OVC-CARE Project, USAID, Project Search; Candace Miller, Lora Sabin, Dr. Reynold G Washington, Dr. Troy Cunningham, Ashokanand H. S., Lavanya Garady 38http://www.bu.edu/cghd/files/2012/01/3-Karnataka-Cash-Transfer-Scheme-India-OVC-Dissemination-Meeting-1-10-12.pdf The Karnataka Cash Transfer Program, Dr.Troy Cunningham, Dr. Candace Miller, Dr. Lora Sabin, Dr. Jenny Ruducha, USAID, Project Search, and Boston University 39 http://www.pfaindia.in/aboutus-aboutfpa.html

74 75 ANNEXURE Court Pronouncement and HIV

Inb recent times the Supreme Court as well as the Delhi High Court has been considering various issues related to HIV, pertaining to discrimination, rights of sexual minorities and individuals living with HIV. Discrimination Against Children in Schools In March 2014, the apex court issued notice on a writ petition seeking elimination of discrimination against children affected by HIV in schools. The Delhi based Naz Foundation (India) Trust which runs a care home for CLHA had filed the petition. The Petitioner has sought a declaration from the Court that no child affected by HIV would be denied admission, suspended, segregated or expelled on the basis of their HIV status or the status of their parents or guardians. It has further sought directions that the Government frame guidelines under the Right of Children to Free and Compulsory Education Act, 2009 to ensure non-discrimination in schools in this regard. Following are two reports on the matter. LAWYERS CO O L 1 f ! I Supreme Court takes notice of discrimination against children affected by HIV in schools; seeks response from the Union and States40 March 3rd, 2014: The Supreme Court today issued notice on a writ petition, Naz Foundation (India) Trust v. Union of India and Ors., W.P.(C), 147 of 2014, seeking the elimination of discrimination against children affected by HIV in schools, invoking the fundamental rights to life, education and equality guaranteed under the Indian Constitution. Based on their own HIV status or that of their parents or guardians, children affected by HIV face multiple forms of discrimination in schools. Filed by the Lawyers Collective on behalf of the Naz Foundation (India) Trust, an organisation which runs a care home for orphaned and vulnerable children, the petition relied on publicly available reports to show that children have been systematically targeted because of their association with HIV and have faced repeated incidents of humiliation, suspension, violence, segregation, unfair treatment and expulsion. It also relied on a March 2011 statement of the Health Minister, Ghulam Nabi Azad, in Parliament stating that from 2008-2010, sixty one HIV positive children were removed from school. Represented by Anand Grover, Senior Advocate, the Petitioner has sought a declaration from the Court that no child affected by HIV would be denied admission, suspended,

76 segregated or expelled on the basis of their HIV status or the status of their parents or guardians. It has further sought directions that the Government frame guidelines under the Right of Children to Free and Compulsory Education Act, 2009 to ensure non-discrimination in schools in this regard. The Petitioner has also sought that children affected by HIV be notified as a 'disadvantaged' group under the Act, which would place additional responsibilities on the Union Government, the State Governments and schools, including private schools, to ensure their right to education without discrimination. A bench of Justices Dr. B. S. Chauhan and J Chelameshwar issued notice to the Central Government, the National Commission for Protection of Child Rights and all the State Governments and given them time to respond to the directions sought by the Petitioner.

INDIA T O D A Y in

Supreme Court seeks reply to discrimination against HIV-positive students HARISH V NAIR | New Delhi, March 4,2014 | 07:44

Picture for representational purpose only The Supreme Court on Monday sought the views of the Centre and state governments on a PIL about the discrimination HIV-positive students face in schools across the country, for example the refusal of admission, expulsion and even segregation. Seeking urgent guidelines under the Right to Education Act to protect such students, the PIL filed by NGO Naz Foundation and advocacy group Lawyers Collective said the breach of confidentiality regarding the HIV-positive status of such children was the beginning of their mistreatment. Highlighting the severity of the situation, the plea pointed out that there have been incidents where HIV/ AIDS afflicted students were made to clean toilets and classrooms.

77 WHEN IGNORANCE BECAME A WEAPON

MAY 2 0 0 2 (KOLLAM, leave their house along with ters subjected to social boy­ KERALA) two HIV-positive their HfV-posItlve mother cott after they tested positive siblings forced to change owing to the hostility of for HIV & expelled from school. schools three times following thelrnelghbours.ltwasonly complaints and protests by after the Intervention of JULY 2 0 0 7 (JALALABAD, parents of other students. AtC. Antony, the then Chief PUNJAB) Seven-year-old girl Minister of Kerala, that the expelled from school OCTOBER2003 children were taken back by ( KOZHIKODE, KERALA) A the school. JULY 20GB ( LATUR, six-year-old girl teas expelled MAHARASHTRA) Parents of from school after It the, SEPTEMBER ZOO5 about MO children stop authorities found out that (MTONAPORE.WEST sending them to school after her father had died of AIDS BENGAL) d six-year-old girl 10 students were found to be some yean ago. who had losl her father and HIV-positive. younger brother to AIDS axis JULY2 0 0 4 (THffiUVANAN barred from going to school MARC H 2011 Health jlf( q THAPURAM, KERALA) A by people of her village. states in Parliament that brother and sister duo was between 200S and 2010,61 not only expelled from their FEBRUARY ZOGfi (JAGATS- HIV-positive children were school, but also forced to ENGHPUS, ORISSA) Two sis­ expelled from school

"Students are being denied admission, suspended and even expelled from schools if they or their parents or guardians are HIV-positive. They are publicly ridiculed by school authorities and humiliated to the extent that they are segregated from other children in schools and have been made to clean toilets and classrooms," the PIL states. "Moreover, the confidentiality of the HIV-positive status of the children has been routinely breached, a violation of their right to privacy and the rampant acts of stigmatisation that have followed have undermined their human dignity," it adds. A bench headed by Justice BS Chauhan has sought within four weeks the response of the Centre, states and the National Commission for Protection of Child Rights on the petition. Senior lawyer Anand Grover, who appeared for Naz Foundation, cited 22 cases of discrimination from across the country, and also quoted a March 2011 statement Health Minister, Ghulam Nabi Azad made in Parliament that between 2008 and 2010, 61 HIV-positive children were expelled from school. Grover said in most of the cases, schools were "forced" to expel students due to pressure from parents of other children, who fear that their children might contract the condition. On other occasions, he added, residents of areas in the vicinity of schools had made the administration expel patients.

78 V erdict on S ection 377 of IPC In December 2013, the Supreme Court of India ruled that same-sex relations between consenting adults remained a criminal offence, a major setback to the LGBT (lesbian, gay, bisexual and transgender) movement in the country. It was a complete reversal of the landmark July 2009 Delhi High Court decision to decriminalise homosexuality under Section 377 of the Indian Penal Code, which punishes "carnal intercourse against the order of nature" with upto life imprisonment.

The Naz Foundation (India) Trust, an NGO working on HIV and rights of sexual minorities, had filed a Public Interest Litigation against Section 377 in 2001 and a historic judgement was delivered in 2009. Individuals as well as religious groups had appealed against the High Court verdict. The colonial law of 1860 infringes upon the fundamental rights of citizens under the Constitution. Though rarely enforced, the law led to police extortion, violence and discrimination against the LGBT community. However the Supreme Court upheld the constitutionality of Section 377 and ruled that the Delhi High Court decision was "legally unsustainable." It said it was now up to the legislature "to consider the desirability and propriety of deleting Section 377" of the penal code. In January 2014, the Supreme Court reiterated that it would not review its controversial order that made gay sex criminal, even though the December verdict had drawn sharp criticism nationally and internationally for failing to protect fundamental individual rights. In early April 2014, the apex court finally agreed to consider the plea for an open court hearing on curative petition filed by gay rights groups against its verdict. A bench headed by Chief Justice P Sathasivam said that it would go through the documents and consider their plea. Any decision on Section 377 has wide implications for the LGBT community in the country who had come out of closet in the last four years about their sexual identity and face the threat of prosecution. The case has also been closely followed by other colonial countries who still retain this British sodomy law. "Third gender" status for transgenders The Supreme Court in a landmark judgment in April 2014 created the "third gender" status for hijras or transgenders. Earlier the 20 lakh strong community was forced to write male or female

79 against their gender. This is for the first time that Bra $ A fora the third gender has got a formal recognition. BREAKING tiEWS The National Legal Services Authority (NALSA) had filed a PIL urging the court to give separate identity to transgenders by recognising them as third category of gender. iftardta The SC asked the Centre to treat transgender as socially and economically backward, as OBCs. It aft faking news further said that transgenders would be allowed sc A likiri cfit cftztf 4 enftri lien admission in educational institutions and given ifixi- 7i jf a dA 4 .df.uw a t employment on the basis that they belonged to the third gender category. The apex court said the states and the Centre will devise social welfare schemes for third gender community and run public awareness campaign to erase social stigma. The states must construct special public toilets and departments to look into their special medical issues. The SC also added that if a person surgically changes his/her sex, then he or she is entitled to her changed sex and cannot be discriminated. While mentioning that section 377 of IPC was being misused by police and other authorities against them, the bench clarified that its verdict pertains only to eunuchs and not other sections of society like gay, lesbian and bisexuals who are also considered under the umbrella term 'transgender'

Activists celebrate the SC verdict

40http://www.lawyerscollective.org/ updates/supreme-court-takes-notice-discrimination-children-affected-hiv-schools-seeks- response-union-states.html 41http:// indiatoday.intoday.in/ story/supreme-court-plea-ngo-naz-foundation-hiv-aids-students-bias/1/346674.html

80 Measures by ANNEXURE International Organisations J

Prevention and control of HIV/ AIDS requires resources, technology and consistent concerted effort both at the local and global level. Given the high costs, a number of international bilateral and multilateral organisations are collaborating with NACO to addressing HIV/AIDS by contributing their technical expertise and financial resources. UNAIDS is the main advocate for global action on the epidemic and brings together ten UN agencies in a common effort to fight the epidemic - UNHCR, UNICEF, WFP, UNDP, UNFPA, UNODC, ILO, UNESCO, WHO and the World Bank. The global mission of UNAIDS is to lead, strengthen and support an expanded response to the epidemic that aims at preventing transmission of HIV, providing care and support, reducing vulnerability of individuals and communities to HIV/ AIDS, and alleviating the impact of the epidemic. The mandate of UNAIDS in India is carried out through the Joint UN Team on AIDS and the Theme Group on HIV / AIDS, with representatives from each cosponsor. UN AIDS works closely with the Government through NACO and other key partners including SACS, civil society, the academia, the private sector etc., to share knowledge, skills and experience to lead the fight against HIV.

Department for International Development (DFID), India, supports the Government of India's efforts towards achieving the poverty reduction objectives as outlined in the Eleventh Five Year Plan and Millennium Development Goals laid down by the UN. Substantial resources have been invested in select centrally-sponsored schemes in health and education sector. DFID's experience in the five states in the initial years contributed in a large way in influencing national policy and the formulation of future phases of the national programme.

The US Government Assistance (USG) assistance has been received through several agencies and programmes, including USAID, CDC, PEPFAR (The United States President's Emergency Plan for AIDS Relief) etc. USAID implements HIV/ AIDS prevention, care and treatment as part of the PEPFAR. Efforts include HIV prevention in high prevalence states and among high-risk groups, and care and support to children infected or affected by HIV/ AIDS. The USG programmes focus on reducing HIV transmission through behaviour change communication among vulnerable populations. In 2004, USAID scaled up care and support activities. CDC provides technical assistance and training to NACO in HIV/AIDS control and prevention.

81 The German AID'S (GTZ) objective is to transform the national health system to meet increasing demands in an equitable and affordable manner. Its Health Sector Support Programme (HSS) makes a major contribution to the reform process through technical cooperation at the national level and in the states of Himachal Pradesh, Maharashtra and West Bengal. The HIV/AIDS programme operates within the framework of the NACP. HSS facilitates dialogue with industry associations and civil society groups to promote more effective services and products for HIV/ AIDS prevention. The Bill and Melinda Gates Foundation (BMGF) focuses on improving health, reducing extreme poverty and increasing access to technology in public libraries. While normally BMGF does not get involved in service delivery and/ or scaling up of operations, in India the Foundation through its liaison office (Avahan) directs service delivery and scaling up of HIV prevention services towards attaining high coverage. The Avahan Grant is completely unique in the history of the Foundation. In the year 2005 it received a grant of $200 million to scale up prevention interventions in six high-prevalence states in India. Additional grants were added by the BMGF. The major grantees included FHI, University of Manitoba, HIV/ AIDS Alliance, Hindustan Latex Family Planning Promotion Trust (HLFPPT), VHS, University of Lavall, Constella Futures, Australian International Health Institute, Path Finder, Path etc. The Clinton Foundation (CF) established its programme in India in the year 2004, working closely with NACO in partnership with UNAIDS. It supports the efforts of the government in care and treatment programme for people living with HIV/ AIDS. The Foundation set for itself a target of supporting treatment for 100,000 HIV/ AIDS patients by 2007. Towards that goal it helped in training of private doctors, providing CD4 machines and technical consultants to NACO specifically for GFATM implementation. The Global Fund for HIV/AIDS, Tuberculosis and Malaria (GFATM) is an international health­ financing mechanism, which is committed to accelerating the reduction in morbidity and mortality caused by HIV/AIDS, TB and Malaria. Since its inception in 2002, the GFATM has committed $7.1 billion to over 136 countries through approximately 450 grants. The Global Fund is responsible for an estimated 20 percent of all international funding in support of efforts to combat HIV/ AIDS, and approximately two-thirds of global funding for programmes against TB and Malaria. The India-CCM (Country Coordinating Mechanism) is a multi-sectoral partnership at the highest level, representing both the public and private sectors, including government agencies, civil society organisations, People living with and affected by HIV, bilateral development agencies, multilateral development agencies and academic institutions.

The GFATM presently has 15 active grants in India, including 9 for HIV/AIDS42 and has disbursed US $ 1,30,95,76,490 till date. The graph below indicates the disbursements from 2003 to 2013 for HIV programmes.

82 Disbursements by GFATM from 2003 to 2013 for HIV/AIDS andHIV/TB programmes UNICEF has been working in India since 1949 and is the largest UN organisation in the country. India Country Programme of UNICEF (2003-2007) had a focus on HIV. In the initial years of the programme, UNICEF focused on initiating interventions with young people in the states of Maharashtra and Andhra Pradesh. Subsequently, UNICEF undertook a feasibility study for the PPTCT programme and launched the programme at a few centres so that pregnant women with HIV had access to appropriate interventions, especially at the time of labour. UNICEF assistance supported a package of services including counselling, testing and ART to pregnant HIV positive women. The WHO has been supporting several programmes of Ministry of Health and Family Welfare. When NACP was launched, WHO assisted the Gol in the formulation of strategy and plan for the implementation of prevention and control activities. In 1989, WHO supported the development of a medium-term plan for HIV/AIDS control in Maharashtra, Tamil Nadu, West Bengal, Manipur and Delhi, with a $10 million budget mobilised from different sources. In 1990-91, WHO supported the launch of Unlinked Anonymous Surveillance to track the epidemic. In 1992, following the launch of NACP I, WHO assisted in the planning and implementation of a spectrum of activities such as education and awareness programme, blood safety, hospital infection control, condom promotion, strengthening of clinical services for both STD and HIV/AIDS. Among the other organisations working on HIV in the country are International Labour Organisation, UNDP, UNFPA, UNODC, World Bank, International AIDS Vaccine Initiative. 42

42 The Global Fund to Fight AIDS, Tuberculosis and Malaria http://portfolio.theglobalfund.org/en/Country/Index/IND

83 ANNEXURE Media Reporting

INDIA TODAY in

Government to crackwhip on schools discriminating against HIV-positive students RITIKA CHOPRA | New Delhi, October 23,2012 | 04:36

Schools denying admission to the HIV kids would be liable to pay a monetary penalty.

• 2010: Eight HIV positive students are allegedly removed from DPS, Maruti Kunj (Gurgaon). The children later claim that they were made to sweep the classrooms by their teachers • 2009: Eight HIV positive children are asked to leave by the Zilla Parishad School, Hosegaon (Latur), as parents of other students are not willing to let their wards study with them • 2011: A panchayat union middle school in Perunkaranai (Kancheepuram, Tamil Nadu) allegedly expels 29 HIV positive students. A PIL against the alleged expulsion is filed in the Madras High Court • 2012: A school in Madurai bars entry of a 12-year-old HIV positive student. The boy alleges that the teacher started discriminating against him after going through a notebook that spelt out his treatment details These are just a few instances of the injustice meted out to children suffering Name of the No of HIV+children from HIV/ AIDS. Now the government has state discriminated against decided to crack the whip on schools discriminating against such children. Andhra Pradesh 27 Denying education to children with Guja rat 4 HIV/AIDS could land the schools in Haryana 9 serious trouble if the draft law on such Kerala 4 dodgy practices can pass muster with the state governments next month. Maharashtra 1 The draft - Prohibition of Unfair Practices in Uttar Pradesh 3 Schools Bill 2012 - which will be presented West Bengal 13 to the Central Advisory Board of Education TOTAL 61 (CABE) on November 1, makes refusal of admission or expulsion of students on WACO ildla pmi'itff.id bu HIW ministry on August 31 liurar!;', rNon.tuojj v :ssiorr ofth ( UniyQ Sttbha tln< year grounds of having contracted HIV/ AIDS a "cognisable offence". Schools denying admission would be liable to pay a monetary penalty and the school principal or any other officer, responsible for the functioning of the institution, would face imprisonment of up to three years or fine or both. The Bill has been prepared by a committee set up by CABE in 2011 and headed by the minister of state for human resource development D. Purandeswari. CABE is the highest advisory body to inform the Centre and state governments on education issues. Although, the Right to Education (RTE) Act 2010 guarantees education to all children (irrespective of any disability or ailment) in the age group of six to 14 years, this is the first time that a specific provision has been conceived to protect the rights of students with HIV/AIDS. Section 6 (4) of the draft law (a copy of which is with Mail Today) states: "No school THE PENALTY shall deny admission or expel any student on the ground of ■ No school shall deny having HIV/ AIDS or any other serious ailment." admission or expel "Under the RTE Act, a school could be derecognised for any student on the violating a child's right to education. But de-recognition around of hawing HIV/AIDS or any other affects all the children of the school. Why should they be serious ailment punished when the school administration is at fault? A specific provision against the unfair practices in schools. The ■ The above act will be a Bill could make a difference in the sense that it ensures cognisable offence and any individual (including liability of an individual in a school," an HRD official said. the school principal) Amita Wattal, principal, Springdales School, said she wants found contravening or strong reaction from schools on the proposed imprisonment guilty of abetting the for the offence. "Yes, there could be a hue and cry over the contravention of the nature of punishment, but then laws are laws and they have to above provision can face imprisonment up to be harsh to act as a strong deterrent. Schools will not have a three years, fine or both choice but to go along with it," she said.

85 Parliamentary panel again raps Dept of AIDS Control over delay of HIV Bill Joseph Alexander, New Delhi Thursday, January 09,2014 A Parliamentary panel has once again come down heavily on the Department of AIDS Control for the long delay in introducing the HIV/AIDS (Prevention and Control) Bill, which has been pending now over a decade after a decision was taken to ensure equality of treatment to AIDS/HIV patients. "The Committee feels that in spite of numerous recommendations made by it, the Bill seems to be stuck up for reasons best known to the Ministry. The Committee would like the Ministry to take its recommendations with the seriousness it deserves and recommends that the Secretary of the Department of AIDS Control should personally monitor the progress of the Bill to ensure its introduction in the Parliament at the earliest," the Parliamentary Standing Committee attached to the Health Ministry said in its latest report. According to the Department, as claimed before the panel, it was closely working with the Ministry of Law & Justice to finalize the HIV/ AIDS (Prevention & Control) Bill 2013. A Draft Note for Cabinet in this regard had been prepared by the Department of AIDS Control and sent to the Ministry of Law & Justice on 6.6.2013, it said. "On behalf of the Ministry of Law & Justice, the Dept, of Legal Affairs is to submit its opinion and the Legislative Department is to vet the draft Bill. This is currently under process and once these steps have been completed the same will be sent for approval of the Cabinet. Department of AIDS Control is ensuring that all due procedures are followed prior to tabling of the Bill in Parliament," the department said. In its earlier report also the panel had asked the department to speed up the process. "The Committee does not understand the reasons why it should take more than ten years to finalise a Bill when a decision was taken in 2002. The Bill is yet to be finalized. The delay is not justifiable when the problem is enormous and India is third largest AIDS/HIV affected country," the panel said. The draft bill had been pending since August 2006, when the health ministry finalized it. It was then submitted to the law ministry in September 2007 for its mandatory clearance. The law ministry in October 2008 sent its version of the Bill back to the ministry of health. However, several important provisions were compromised in this version. Following this, there were countrywide protests, and in February 2009, the law ministry sent a revised version of the Bill.

86 AIDS fear keeps students away from Latur school45 Over half the students are staying away from classes as their parents fear they may contract HIV/ Aids as some children having the disease also study there. Over 50% of the students of a government school here are staying away from classes as they and their parents fear that they may contract HIV/Aids from some students who have the disease. The district council school at Hasegaon village, in this Central Maharashtra district, is flooded with requests by parents for transfer certificates (TC). According to a local source, an ashram, managed by the non-governmental organisation Ahmi Sevak, is being run in Hasegaon village where orphans, HIV-positive, and Aids- afflicted children stay. Ten students from this ashram, Sewalaya, are studying in the zilla parishad (district council) school. Since the past few days there are rumours in the village that if anybody dines or plays with the HIV/ Aids patients, they will also get affected. As a result, parents of many other students of the school have applied to the headmaster forTCs. When contacted, headmaster Dharmraj Sathe said, "We will give admission to as many Aids-affected children as we can because we know Aids does not spread by dining or playing together. "We are trying our best to clear the doubts and misconceptions about the dreaded disease, but the adamant wards and parents are in no mood to listen to us. The reason for TCs mentioned by the parents is not justified and as such I am not going to issue TCs on these grounds." After the clarification given by Sathe, parents of more than half the students have stopped sending their wards to school. The school has about 300 students. Sarpanch Bhausaheb Deshpande, chairman of the Gram Shikshan Samithi (village education committee) said, "We are trying to clear the doubts of the parents, but the number of absentees is on the rise. We are going to conduct a gram sabha (assembly of villagers) in which parents will be invited and the issue will be discussed." Meanwhile, district education officer D Joshi, his deputy S Sonawane, and other officials visited the village and had discussions with Sewalaya director Ravi Bapatley Despite the National Blood Policy, children have been infected with HIV as well as hepatitis through blood transfusion.

87 Thalassemic kid tests HIV positive in Rajkot now Tfie Indian EXPRESS Express news service Posted online: Wed Feb 29 2012,03:20 hrs Rajkot: Months after 24 thalassemic children were tested HIV positive after undergoing blood transfusion at the Junagadh Civil Hospital, another eight-year-old thalassemic boy, this time from Rajkot, has met with the same fate. However, unlike the last case in which parents of the affected children claimed to have procured blood only from Ju n ag ad h C ivil H osp ital, th e child in R ajkot w as su p p lied b lo o d fo r regu lar transfusion from vario u s b lood banks run by the government, Red Cross and private clinics. Thalassemia Jagruti Manch (TJM), a voluntary group, has promised to arrange for the best possible medical treatment for this class III student, besides running a drive to conduct tests for all thalassemic patients in the district. "Since the blood was procured from different blood banks over the years, it will be very difficult to find the exact source of infection in this ca se," said M ital K h etani o f TJM . "H o w ev er, ou r p riority is to p rov id e the b est treatm en t to the child who comes from a very modest background," he said. The child was diagnosed with thalassemia when he was six-months-old. He lost his father three years ago. His uncle, who runs an auto-rickshaw, was not sure whether to file a complaint against any blood bank or not. "I have the responsibility of two families and parents on me. I do not have time and money for the legal battle," he said. The man said that in the wake of the tragedy in Junagadh, a few relatives had asked him to get HIV tests done on his nephew. The first test, done three months ago, turned out to be positive. A second test for verification was conducted on February 16, which too was positive. The child's mother's tests have been negative. Khetani said that in September last year, free HIV test camp was organised by his organisation in Rajkot, where patients from all over Saurashtra were asked to participate. "But the turnout was very low and nobody was tested positive. W e soon held a second camp," he said. Of the 23 children who were tested HIV positive between January to August 2011 in Junagadh, two have died so far. Another boy was HIV tested positive last month. While the state government had given a clean chit to the Junagadh Civil Hospital, the High Court had ordered an inquiry by the police into the matter.

Published: September 12, 2011 00:00 IST 23 thalassemic children test HIV positive in Gujarat hospital Twenty-three children suffering from thalassemia have tested HIV positive at a Junagadh civil hospital where they had gone for blood transfusion, prompting authorities to order a probe. "Twenty-three children have tested positive for HIV in Junagadh civil hospital. Over 50 per cent of the children were taking blood transfusion from multiple sources," Gujarat Health Minister Jaynarayan Vyas said citing a report of the tests conducted on the children three days back. "The pre-blood transfusion test conducted on them shows they were infected prior to admission in Junagadh civil hospital," he said. The children suffering from thalassemia visit the hospital from various towns of the district to avail the facility of blood transfusion which is offered twice a week free of cost. "A probe has begun. The blood collected both from the blood bank and from donors has been sent for testing," Junagadh Civil Hospital Superintendent G. T. Dayalu said. "Patients might have been HIV positive even before coming here for blood transfusion," he said. T he child ren m igh t h ave b een transfused H IV -in fected blo o d w ith o u t cond uctin g p ro p er tests, a sen ior d octor a t the hospital claimed. The Gujarat Government has also launched an inquiry into how the children contracted the virus. Thalassemia is a genetic blood disorder in which the body makes an abnormal form of haemoglobin and there is excessive destruction of red blood cells leading to anaemia. -PTI

42 The Global Fund to Fight AIDS, Tuberculosis and Malaria http://portfolio.theglobalfund.org/en/Country/Index/IND 43 http://indiatoday.intoday.in/story/hiv-aids-positive-children-government-law-schools-cabe/1/225822.html 44 http://www.pharmabiz.com/NewsDetails.aspx?aid=79697 45 http://www.dnaindia.com/mumbai/report-aids-fear-keeps-students-away-from-latur-school-1272170 46http://www.thehindu.com/todays-paper/tp-national/23-thalassemic-children-test-hiv-positive-in-gujarat-hospital/article2446048.ece 47 http://archive.indianexpress.com/news/thalassemic-kid-tests-hiv-positive-in-rajkot-now/918099/

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