Fifteen per cent of India’s 2.5 million HIV-positive are children. That’s 375,000 children, with 50,000 being born infected or becoming infected each year. The government has woken up to the tragedy and held a series of public hearings across the country recently. Sandhya Srinivasan spoke to R Meera who attended the hearings
“HIV has been addressed for more than 20 years but there has not been enough focus on core areas such as the needs of women and children.”
R Meera from the Tirupati-based Women’s Initiatives (WINS), has many experiences to relate about the scant attention and concern being shown for children and women with HIV. According to the National Aids Control Organisation (NACO), of India’s 2.5 million positive population, 15% or 375,000 are children. Some 50,000 of them are born infected or become infected each year.
Meera welcomes the series of public hearings that were recently organised by the National Commission for Protection of Child Rights, in collaboration with ActionAid.
“It is important that children are being talked about. Orphans with HIV are thrown out of their homes. Few groups care for them. They are denied government hostel rooms. Girls with HIV are viewed as a greater liability,”says Meera who attended all the public hearings.
From March 2010, JJ Hospital in Mumbai starts second-line antiretroviral therapy (ART) for children, adding to the approximately 14,000 children on first-line ART across the country. This is a good development, but adults seeking second-line treatment have already faced many hurdles (see box).
There are many more children who are ‘affected’ by HIV when they live in households where at least one member is HIV-positive. They may have to support the family through small jobs, sometimes putting themselves at risk of infection. Or they care for the other children in the family, or for ill adults. Very few of them are given support in the form of government-paid foster care.
Women living with HIV/AIDS face their own battles – with in-laws who refuse to give them their share of property or goods, with hostility from society, almost no support networks and sometimes coping also with children who may be infected.
WINS, which is funded by ActionAid, has organised about 25 women’s networks or mandals in Chittor district of Andhra Pradesh. There are about 800 families here with at least one positive person in the household. The programme is developed by women. “Infected women contemplate suicide; they must find a way to rebuild their lives,” says Meera.
WINS has helped in 83 cases of property rights in Chittor district. In almost all these cases, women whose husbands died of AIDS are fighting cases against their in-laws for property/jewellery, just to keep their names on the ration card.
Women living with HIV have common experiences of ignorance, rejection, destitution. Some battle for their rights if they have support, others accept their tragic fate, many give up when the pressure gets too much.
Typically, says Meera, a girl reaches puberty at the age of 13 and is married off at age 14 to a man twice her age. She is not told that he is positive. By the age of 16 she is a widow with two children. She has no clue about anything, she’s just 16 years old. She has no home to call her own, no food, and no self-esteem. The villagers will not talk to her. The sheer helplessness of abandoned women makes them vulnerable to sexual overtures.
If she is lucky enough to come to the attention of an NGO like WINS, “we would go and meet her, tell her that HIV is not equal to AIDS, that she can live, and live well,” says Meera. She starts attending meetings and may be emboldened enough to inquire whether she can at least get back the goods her mother gave her at the time of her marriage. She has a right to these things, but is afraid to ask for her share; even her mother will not support her.
“So as not to be confrontational, she might not even stake her right to the family property. She might just ask for the title deed to be transferred to the children’s names,” Meera says. The in-laws assure her it will all go to her children but that’s as far as it gets.
If she persists and the situation builds up to a confrontation, the in-laws will project her as demanding and greedy. Eventually they may tell her to get out and take her children with her. She has no money and no help.
Not many cases end up in the courts, though property rights for HIV widows is a major issue that can only be decided in the courts. “There are a few good lawyers who help the poor,” says Meera. “We try to find good lawyers – we’re in contact with the Human Rights Law Network for this – and we cover some costs. A villager from a rural area cannot fight without support.”
The financial and emotional costs of a long battle take their toll. “In the end, a paltry sum is got from the in-laws but the woman is tired of fighting and takes whatever she gets. She’ll say ‘I’ve fought so much, even this is enough.’”
Women are often risking their lives by fighting for their property rights. This fact was brought home in the case of Vidya Kadam in Sangli, Maharashtra. In 1996 Vidya got married to Rajendra Kadam, a farmer. A year later, Rajendra was dead of AIDS, Vidya had learned that she was HIV-positive, and her in-laws had thrown her out of the house. She went to court to claim her property. The district court ruled in her favour, and so did the high court. In 2008 she was dead – murdered by her in-laws.
Will the public hearings that have been held address any of these issues? Meera says that the hearings “give us tremendous hope that the government sees itself as accountable to the people.” The hearings recorded the widespread stigma and discrimination faced by women and children with HIV. They were also meant to identify gaps in policy regarding access to treatment and other services. Whether the exercise results in well targeted action on the ground remains to be seen.
Quality of government treatment
The government’s free second-line treatment for adults was launched some time ago, but the Network of Maharashtra Positive People has pointed out that it is limited to people who have taken first-line ART at a government centre for two years. However, people may prefer to pay for private ART as long as they can afford the drugs. Eventually they become resistant to first-line drugs and since second-line drugs are much too expensive for the majority of people, they ought to be able to access these under the government programme.
One reason people may prefer to pay for ART as long as they can is the poor quality of government services.
“This is a high investment programme with a heavy superstructure but you also need good treatment at the service level,” says R Meera from the Tirupati-based Women’s Initiatives. “For example, most patients at ART centres are poorly educated about treatment adherence. Government doctors receive no special training on how to inform poor people and anyway they have no time to talk. These drugs are toxic but all that people are told is to take their medicines on time. No one explains the side-effects of medicines, or the importance of good nutrition – that it helps prevent the drop in the CD4 count. If such details are explained properly in government centres, people won’t go to private doctors.”
It’s not that people want to spend money on drugs that they should receive free of cost; they go to the private sector because it is perceived as more friendly and accessible than the government services.
It is another matter that many people on treatment find it difficult to get three meals a day. “We urge adequate nutritional support for people with HIV,” says Meera. “We should consider double rations for such families.”
Infochange News & Features, March 2010