The forgotten face

Although the government has recognised the need to give adequate attention to HIV/AIDS, children remain excluded from its response.

LAXMI*, a maternal orphan, was 12 years old when her father remarried and sent her to live with her grandmother in Pondicherry. When her grandmother sold her into sex work for Rs.35,000, she worked the Chennai beat for a year until she was caught in a police raid. She was framed by the owner of the brothel she was working for, taken into custody for running a sex racket and sent to a remand home. At 14, after seeing over 1,500 clients, she learned she was human immunodeficiency virus (HIV) positive.

Three years on, she lives with 36 children under 14 years of age at the ashram of the Community Health and Education Society (CHES), a non-governmental organisation (NGO) in Chennai. Almost all the children are HIV positive. Many are orphans.

Laxmi is one of an estimated 1.2 million invisible children affected by HIV in India (World Bank 2002). According to the Joint United Nations Programme on HIV/AIDS (UNAIDS), 120,000 children are living with the virus in India. The National AIDS Control Organisation (NACO), in charge of formulating and implementing a national policy to combat Acquired Immunodeficiency Syndrome (AIDS), estimated that around 60,000 new infections occurred in children last year. That is, the HIV growth rate among children in India is almost 50 per cent a year. Activists estimate that based on India's global percentage of infections, around 250,000 children are HIV positive. The truth is, of the estimated 5.7 million people infected with HIV in the country (UNAIDS 2006), little is known about the number of children infected with or vulnerable to the virus.

In the first week of June an Indian delegation sat at the United Nations General Assembly Special Session (UNGASS) to review the commitments made in the 2001 Declaration on HIV/AIDS. These included time-bound commitments to prepare by 2003 and implement by 2005 strategies for special assistance for children orphaned by and vulnerable to HIV/AIDS, provide anti-discrimination legislation for their protection, reduce the number of infections passed from mother to child by 20 per cent by 2005, and roll out treatment and care.

Examining progress made towards these goals reveals that although the current government recognises the need to give adequate attention to HIV/AIDS, children remain the forgotten face of the epidemic.

Orphaned children are vulnerable to HIV because they are often pushed by circumstances into high-risk behaviour. Often stigmatised, they may be ill-treated by their guardians, and dispossessed of their inheritance and property or worse driven to hard labour, sex work, and life on the streets. No national strategy exists currently to aid children orphaned by HIV.

Thus far the future of children affected by HIV/AIDS has been determined using models of other countries. Dr. P. Manorama, president and project director of CHES, has been working in the community on HIV/AIDS for the past decade. She believes these are inappropriate, and therefore unhelpful, in the Indian context.

"The beliefs of people living in India are very different... . Imagine trying to counsel a child with an African or another country's experience... The governments of India and Tamil Nadu have to realise that a lot needs to be done for these children. How can you expect a child that is around 10 or 12 years old, just because it is an orphan, to head a family?... What are we pushing the child to? To steal things, rob, to sell drugs, go for prostitution, labour?"

In NACO's Progress Report on the Declaration of Commitment on HIV/AIDS 2005, submitted for the UNGASS review this year, NACO concedes it has made no progress in designing and implementing programmes for children orphaned by and made vulnerable to HIV. In fact, there is no nationally coordinated data monitoring and evaluation system upon which to frame a strategy for children. Until these figures are available it will be difficult to roll out a properly resourced, needs-based programme.

According to Sujatha Rao, Director-General of NACO, these children will be accorded greater priority in the next National AIDS Control Programme, NACP III, which is still being formed. Among other things, informed sources say, this will include livelihood support and education provisions as well as treatment for children living with HIV.

The International Treatment Preparedness Coalition (ITPC) reported that 1,215 children with HIV, just 1 per cent of India's total number of children infected, were receiving treatment as of April this year. Currently, no India-specific guidelines for the treatment, care and support of children living with HIV have been distributed and there are no paediatric formulations of medicines available under the government-sponsored programme.

Government centres currently distribute paediatric dosages based on World Health Organisation (WHO) recommendations by weight band, administered by dividing fractions of adult formulations. Though this allows treatment of sorts, administering drugs according to a child's weight is problematic for several reasons. Children's, in particular infants', bodies absorb and metabolise drugs differently from adults. Furthermore, a child's body reacts to its environment, so treatment by weight band in India will vary from treatment by weight band in Africa or elsewhere. Treating children by a uniform set of guidelines means that a significant number of them suffer from violent side-effects and withdraw from treatment.

More problematic, breaking adult formulations into pieces often leads to under or over-dosage through human error, and over time, drug resistance. Since the national government-run programme does not yet administer second-line drugs free of charge, it would seem that any child who develops immunity has a short future.

The government has two options for NACPIII. One is to develop India-specific guidelines for treatment by weight band. Such guidelines have been prepared by the Indian Academy of Paediatricians. However, informed sources say these have not yet been approved by NACO and distributed to the national network or NGOs.

The other is to treat children with specially formulated paediatric drugs. Until last year, some of the best tools used in the fight against HIV in adults were not available for children at affordable prices. "Now, there are at least 15 paediatric drugs that have been approved for use by the WHO, and six of those drugs are made in India," said Dr. Vineeta Gupta, director of the Washington-based Stop HIV/AIDS in India Initiative (SHAII), a non-resident Indian advocacy group that addresses Indian and international efforts to address HIV/AIDS, tuberculosis and malaria in the country.

Two affordable paediatric three-in-one dose combinations are Emtri (zidovudine/lamivudine/nevirapine), manufactured by Emcure, and Triomune Junior (stavudine/lamivudine/nevirapine), manufactured by Cipla. These breakthrough medicines have been available since March 2005 and conform to good medical practice guidelines. Emtri is in use in several countries in Africa, Latin America and Asia, and Triomune is being marketed to private hospitals and NGOs.

Although NACO has licensed State AIDS Control Societies in Tamil Nadu, West Bengal, Maharashtra and Uttar Pradesh to procure paediatric drugs independently, at the moment none is provided under the national programme in India.

Union Health Minister Anbumani Ramadoss told The Hindu in the second week of June that two three-drug antiretroviral (ARV) combinations would be distributed from HIV clinics as part of NACPIII. The goal is to reach 1,00,000 children by 2007 and 10,000 this year. However, informed sources say that the planned scale-up is yet to be finalised and full implementation is not expected until the end of this year.

In 2003, the WHO-led target for treating HIV infection in India was to reach 3,55, 000 people with medicines by 2005. According to the ITPC only 35, 678 people are on treatment today. In 2004 the government committed itself to providing free treatment for 1,00,000 people living with HIV by the end of 2005. It has been unable to keep that promise; constraints in programme roll-out have meant that the target date was shifted to 2007 and recently once more to 2008.

Providing medicines to so many children in so short a time calls for radical action by State AIDS cells and a massive scale-up in training for nurses and paediatricians. Although, Anbumani Ramadoss has said that four new training centres for excellence in nursing will be set up, it is unlikely that the nurses will be trained in time to meet the 2006 target of 10,000 or indeed the 2007 target of 1,00,000 children.

According to K.K. Abraham, president of the Indian Network for People Living with HIV/AIDS (INP+), "NACO needs to develop a concrete plan for providing ARVs to all those who need treatment. We should no longer give excuses that we [India] have limited resources. Develop a road map for universal access to ARVs in India; get support of various partners; and mobilise necessary resources."

The most cost-effective way of containing HIV in children is prevention of mother-to-child transmission. At the estimated rate of 30 per cent of transmission of HIV from mother to child, there are nearly 60,000 newborns infected a year from 189,000 infected women. Fewer than 4 per cent of these mothers are receiving testing and counselling and fewer than 3 per cent are receiving the antiretroviral prophylaxis. By NACO's estimate, in order to reach the 2001 goal, seven million more pregnant women needed to be reached at the end of last year.

In response, NACO plans to create expand centres in the six high-prevalence States of Andhra Pradesh, Maharashtra, Karnataka, Tamil Nadu, Manipur and Nagaland. This, however, does not go far enough in addressing the issue. While this may reach the 2.88 million women, another five million in the low-prevalence States will still lack the services.

As a member of the Gujarat Indian State Network of People living with HIV/AIDS pointed out in the ITPC report, "NACO should not discriminate against PLWHA [people living with HIV/AIDS] living in certain States of India by establishing ARV centres only in high-prevalence States... . Is it my fault if I happen to live in a low-prevalence State?"

Disparities between State responses are sharp. A study in the medical journal The Lancet, published in March, showed that overall infection rates have fallen by a third in the southern States through an aggressive sex education campaign.

The Tamil Nadu State AIDS Control (TANSAC) organisation has taken greater interest in the issue of paediatric HIV in the past two years, but even TANSAC has only 2,000 children registered for care and 479 on treatment. According to Manorama, data from antenatal clinics suggest that 3,000 children are born infected, and 9,000 are affected by the virus in their parents each year. Over a five-year period, which is the average life expectancy of a child infected and not on treatment, this means 15,000 children are infected in only one State.

As the number of HIV positive people in India increases, so will the number of children orphaned by the virus. Critical to an effective response will be country-relevant education and life-skills provision in community-based and home-based care programmes. These will enable children to remain in a safe environment, create awareness in the community, help reduce stigma and prevent infection in adults.

It remains up to the government to design, implement and evaluate a programme that sufficiently addresses the HIV epidemic in children. If under-resourced governments in Africa can provide their people with a framework and resources to do so, ssurely the government of the economically burgeoning and increasingly influential India can do the same.

*The name has been changed to protect the identity of the bearer.