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Left out — children with AIDS

Sarah Hiddleston

No India-specific guidelines for the treatment, care, and support of children living with HIV have been distributed.

LAXMI* WAS 12 when her father remarried and sent her to live with her grandmother. She was sold into sex work for Rs.35,000 and was caught in a police raid after a year. Framed by the owner of the brothel she was working for, she was taken into custody for running a sex racket and sent to a remand home. At 14, she learned she was HIV positive.

Three years on, she lives with 36 children under 14 who have been affected by HIV at the Community Health and Education Society (CHES) ashram in Valasarawakkam, Chennai. Almost all of these 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 UNAIDS, 120,000 Indian children were living with the virus in 2004. The National AIDS Control Organisation (NACO) estimated that around 60,000 new infections occurred last year. Activists estimate that around 250,000 Indian children are HIV positive today but there is no accurate estimate.

On Wednesday, an Indian delegation sits at the United Nations General Assembly Special Session (UNGASS) to review the 2001 Declaration on HIV/AIDS. It included commitments to prepare by 2003 and implement by 2005 strategies for special assistance for children orphaned by, and vulnerable to, HIV/AIDS,reduce the number of infections passed from mother to child by 20 per cent, and roll out treatment and care. Examining the progress made reveals that though the present government has recognised the need to give adequate attention to HIV/AIDS, children in India remain the forgotten face. No national strategy currently exists to aid children affected by HIV.

P. Manorama, president of the non-governmental CHES , has worked in the community on HIV/AIDS for the past decade. She says: "The beliefs of people living in India are very different... Imagine trying to counsel a child with an African or another country's experience... How can you expect a child that is around 10 or 12, just because it is an orphan to head a family? What is going to be their quality of life?"

In its 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 vulnerable to HIV. According to Sujatha Rao, director-general of NACO, these children will be accorded greater priority in the next National AIDS Control Programme, NACP III.

Sources say this will include livelihood support and education provisions. However, it is not clear whether they will be provided with proper treatment.

No India-specific guidelines for the treatment, care, and support of children living with HIV have been distributed. Government centres administer paediatric dosages of antiretroviral (ARV) drugs based on World Health Organisation recommendations by weight band. This is problematic because children's bodies absorb and metabolise drugs differently. Although India-specific guidelines have been prepared by the Indian Academy of Paediatricians, sources say these have not yet reached the NACO national network.

As of April, only 1,215 of the NACO-estimated 39,000 children who need ARVs were receiving them, a document prepared by the International Treatment Preparedness Coalition (ITPC) said.

Recently, Ms. Sujatha Rao announced that about 10,000 children would be provided treatment.

According to K.K. Abraham, president of the Indian Network for People Living with HIV/AIDS (INP+), these dosages may still be administered by dividing fractions of adult formulations, which often leads to under or over dosage through human error, and over time, drug resistance. Since the national programme does not yet administer second line drugs free of charge, it would seem that any child who develops immunity has a short future.

"NACO needs to develop a concrete plan for providing ARVs. We should no longer give excuses that we [India] have limited resources. Develop a roadmap for universal access to ARVs; get support of various partners; and mobilise necessary resources," Mr. Abraham concluded.

There are no paediatric medical formulations available under the government-sponsored programme. 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 WHO, and six of those drugs are made in India," said Vineeta Gupta, director of Stop HIV/AIDS in India Initiative (SHAII), a Washington-based NRI advocacy group.

Two paediatric three-in-one dose combinations available: are Emtri (zidovudine/lamivudine/nevirapine), manufactured by Emcure, and Triomune (stavudine/lamivudine/nevirapine), manufactured by Cipla. Both have Indian Regulatory Drug approval. Emtri is already in use in Africa, Latin America, and Asia. Triomune is being marketed to private hospitals and NGOs. Although NACO has licensed State AIDS Control Societies in Tamil Nadu, West Bengal, Mumbai, and Varanasi to procure paediatric drugs independently, none is provided under the national programme.

NACO told this writer that paediatric formulations have yet to be developed by the pharma sector and brought under GMP guidelines. Crucial in the fight against HIV in children is providing ARVs to pregnant women.

Less than three per cent of an estimated 189,000 HIV positive women in antenatal clinics received ARVs last year. By NACO's own estimate, over 7 million more pregnant women needed to be reached to meet the 2005 UNGASS target.

(*To protect identity, the name has been changed.)

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