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P. T. Jyothi Datta

It's a doubly sad state — more children are getting infected with HIV and the medical support system remains blind to their needs. There isn't even a paediatric dosage of the anti-AIDS medicine yet.

It is a twilight zone that they live in. Too young to understand the implications of being infected with HIV/AIDS and yet forced to deal with the hardships that come with the illness.

Economically disadvantaged, single parent families and the absence of child-oriented support systems — children are increasingly bearing the brunt of an illness that was earlier largely associated with adults.

The fact is that globally 5.1 lakh children below 15 years have died of HIV/AIDS in 2004. According to UNAIDS data for 2004, an estimated 22 lakh children below 15 years are living with HIV and about 6.4 lakh were newly infected this year.

Cold statistics, but hard facts that highlight the grey zone in which children afflicted with HIV/AIDS live. The national AIDS programme must incorporate support and treatment initiatives tailored to the needs of these children.

A reality check on the ground, as one more World AIDS Day went into history on December 1, shows that HIV-intervention programmes are indeed attempting to put women and children on the top of the list. Interventions to prevent transmission of the illness from mother to child, for instance, have evolved across the world.

But apart from that, much work is needed in the area of support and care for children infected with HIV/AIDS — from providing paediatric versions of anti-AIDS drugs to educating society on coping with this problem.

Women and children are generally accorded high priority in AIDS intervention programmes, says Dr Purnima Mane, who works with the Department of Social Mobilisation and Strategic Information, UNAIDS (Geneva). "But yes, children are a vulnerable segment and there is limited knowledge in the world on how to deal with children living with HIV/AIDS. They have to be dealt with differently, in terms of the appropriate dosage and regime for children. The World Health Organisation has guidelines for children, but the level of sophistication is still evolving," she admits. And, unfortunately, more children continue to get infected. The UNAIDS report for 2004 puts the number of HIV infected people globally at 39.4 million — the highest-ever. A large number of these are women. The steepest increase was in East Asia, Eastern Europe and Central Asia over the last two years. India stands at 5.1 million people with HIV/AIDS in 2003.

In India, there is a near-typical social profile among infected women and children, says 30-year-old Kousalya, President of Positive Women Network of South India. "Most often the woman comes to know she is infected only when her husband is already sick with the illness. Children may get infected at birth. Whatever the cause, there is not enough information on how to deal with the infection in children," she says.

"Most often the infected mother starts working for the first time in her life when her husband gets infected and, as a result, the family is under tremendous economic strain. The children get affected, as they are pulled out from school to supplement the family income by doing some odd job. In the case of infected children, there are no medicines in the market with dosages for children. Since the numbers are not sizable, companies do not market them," says Kousalya, who is infected with the illness.

While national-level programmes are looking at prevention and interventions for adults with the disease, increasingly HIV-infected children are being reported from Kerala, Karnataka and the North-Eastern States, she says.

"There may be infected children in other States too, may be they are not reported," she adds. Her Chennai-based network is attempting to establish a national presence. It is also designing interventions to support children and educate women not just in urban but rural areas as well.

"We are trying to sensitise self-help groups to educate the women and deal with children not just infected with the illness, but also affected indirectly when their parents get infected and incapacitated," she says.

The experiences are quite similar in Maharashtra which, like Tamil Nadu, has a high prevalence of HIV/AIDS. "The intervention programmes are male-oriented. There is no information at the local level on how to deal with infected children. There is no dosage for them, not even a liquid form of the drug. The medicines given to adults are powdered and given to children," says 27-year-old Shabana, who belongs to a network of people infected with HIV/AIDS, which operates from Thane and Pune, educating the mothers and providing nutritional support to children with AIDS.

Recounting the case of two children below 10 years who are infected, she says schools in Maharashtra are progressive and allow the children to continue their studies. However, she is concerned about what would happen once the symptoms start showing. She only has silence for an answer.

Gita from West Bengal says there are "instances when women are forced out of home when their HIV status is revealed. We try to educate people that the illness does not spread through simple contact. There are several NGOs that support economically weak families. For instance, some families are given Rs 1,000 or rations for a month. But this is only in desperate cases. In other cases, the women are taught self-employment skills and we even try to market the products," says the HIV positive young woman.

Self-employment is precisely what James advocates. Having lived with the illness for about 10 years now, he summarises the challenges of the illness: "People living with AIDS need to get together and generate self-employment initiatives, rather than be dependent on some organisation all their life. If we put our minds to it, we can come up with solutions, in ways that Thailand has done. As for support systems, the national programme should look at children along with the parents. Coverage should be holistic. I would like everyone to be supported by the programme, without any criteria to judge who deserves it more than the other. That would be ideal," says the man, on the eve of his 34th birthday.

The AIDS vaccine

Given the increasing feminisation of the disease, it is obvious that ABC (abstain, be faithful and condoms) is not working," says Anjali Nayyar, India Country Director, with the International AIDS Vaccine Initiative (IAVI). Vaccines are "invisible", female-friendly technologies that can address the vulnerability of the woman in this illness, she points out. IAVI attempts to enrol both men and women for the clinical trials of the vaccine. "It is difficult to enrol women on the trials, given the responsibilities they face and the insensitivities of the trial staff. But we have set up a gender advisory board to advise IAVI and the trial staff have been trained to deal with women," she says. And as the first phase of a global multi-centric trial for an AIDS vaccine starts in Pune in 2005, she reiterates: "At no point will the volunteer get infected as a result of the trial, as only fragments of the virus are introduced into the body. They cannot infect the individual." The ideal vaccine is a single shot protection, she says, adding that an actual vaccine is still several years away.

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