Living in hope

Women continue to face the onslaught of AIDS in a year dedicated to women's empowerment. SUMITA THAPAR writes on how poverty and ignorance take their toll,while rehabilitating the affected remains another challenge to reckon with.

BARELY in her mid-20s, she has lost her husband to HIV. She lives with the virus and has a two-year-old son who is also HIV positive. Disowned by her in-laws and family, she made her way from Pune to Delhi's Michael's Care Home to access better care for her son. Now a dedicated healthworker at the home for HIV- infected people, she says: "When I discovered I was positive, I thought I would never be able to work. I dreamt of becoming a nurse. I feel so good about the work I do here." Meanwhile, Dr. Lal, the doctor at the home, says her son is doing well and calls the perky child "our lucky mascot".

At a drop-in centre for HIV-positive people at the Mumbai Central station, a woman in her mid-30s says she was infected through her husband, yet it was she who was thrown out of the house along with her one-year-old son. Bitter at having to pay for her husband's behaviour, she is determined to make the best of her life, knowing she will not live long. Her acute weight-loss and poor health indicate that she is in an advanced stage of the disease. "Both my husband and I worked for an AIDS control organisation, we knew everything about AIDS. Men act irresponsibly and don't we get punished for it? We do." Her one fear is, who will take care of her child?

At a private clinic in suburban Mumbai, which also serves as an HIV/ AIDS counselling centre, Dr. Prakash Bora says many of those infected are women as young as early-20s. Some of them are widows. The number of paediatric cases of AIDS is also on the rise. Bora's wife, Aruna, also a doctor, says many are very quiet during their counselling sessions. Unable to comprehend the benumbed reactions of women, she attributes the painful silence to "the Indian woman's sahanshakti, strength to bear."

HIV prevalence is highest in Maharashtra and, within the State, Mumbai accounts for the largest number of cases. Surveillance sites at antenatal clinics show a prevalence rate as high as 2.5- 3.5 per cent. Since pregnant women are taken as fairly representative of the general population, antenatal site figures are assumed to be the general prevalence rate. Says Dr. Alka Gogate, Mumbai District AIDS Control Society: "Feasibility studies are being done in different parts of the country to form a national policy towards preventing mother-to-child transmission." At the moment, public hospitals in Mumbai are providing pregnant women antiretroviral therapy to prevent mother-to-child transmission of the virus.

However, non-governmental organisations working on HIV present a different scene. They say it is not certain how many women are able to access this therapy at public hospitals. Most private maternity hospitals do a mandatory blood test for HIV on all women, only so that they can refuse treatment to those who are positive. "Where are these women going then for delivery?" asks Dr. Ramesh Goud of SOS Medical and Educational Foundation, Nasik. "Can a woman be tested for HIV without her consent at the clinic, and what does voluntary consent mean anyway in this situation?" asks A. K. Ganesh of YRG Centre for AIDS Research and Education, Chennai.

As the epidemic moves from high-risk groups to the general population, many women discover their sero-status only when they are pregnant. Says Jyotsana Karkare, counseller at Mumbai's Wadia Maternity Hospital, a pioneer in providing care to HIV-positive women: "Many of the infected are very young couples. Many women are newly married, so we can assume that they would be in the high viral load phase."

Research findings indicate that immediately after infection, there is a high viral load in the body as the virus multiplies fast. Then comes the plateau. This is a cyclic process. In advanced stages of the epidemic, again the viral load increases and hence risk of transmission increases. Normally, a positive mother has a 30 per cent chance of transmitting the virus to the child. However, with improved methods, the risk can be brought down to almost two per cent.

Karkare adds that there is tremendous pressure from the family on newly married couples to have children. "We advise the couple to make a decision together, explaining to them what being positive means. We also give them different options during the counselling sessions," says Karkare. Critical information, positive groups feel, is not being conveyed in most antenatal clinics in the country. Says Geetha Venugopal of Indian Network of People Living with HIV/ AIDS, Chennai: "Many pregnant women are being asked to undergo abortion without being given adequate information about mother-to-child transmission."

For a pregnant, HIV-positive woman, the virus can be transmitted before or during delivery, or during breastfeeding. Medication like AZT given to the mother in the last trimester and to the baby for the first six weeks, or a single dose of nevirapine to the mother as she goes into labour and a single dose to the infant brings down risk. A caesarian delivery further reduces risk as the child does not come in contact with the mother's infected body fluids. Karen Pinto of CCDT, Mumbai, says many of the infected women are poor and cannot afford other forms of feeding. "If we see very poor families, and if there is a chance of the child dying of malnourishment, we ask them to breastfeed the child. This helps the child develop resistance. If other feeding options are available, we ask them to go for it. It is important that as doctors and counsellors, we give them all the information and help them make an informed choice." CCDT runs a daycare centre for infected people at the Mumbai Central Station and also Ashray, a home for children affected by the virus.

Since most women are first-time mothers, they are uncomfortable with different options. Many are in their first year of marriage and still getting to know their husbands, say counsellors. Since women register at the hospital only after the seventh month of pregnancy, options like MTP are not easy. Social pressures of bearing a child in the first year of marriage are high. Again, if the mother decides not to breastfeed, she must be prepared to face the pressures. She may even have to reveal her HIV-status. Practising safe sex is another issue. Karkare says, "We encourage positive couples to practice safe sex as otherwise the viral load in women increases. Use of the condom is a difficult area to counsel." Despite all efforts by the service provider to give gender sensitive counselling and help the couple in arriving at decisions free of guilt, at the end of the day, each decision the woman makes does have an element of sacrifice.

Community-based programmes such as those at Ashray, Mumbai, look at other support interventions for affected families such as education, nutrition and medical needs. To prevent school drop- outs among children, education expenses are met. Family members are trained in care giving, sometimes emotional and spiritual needs are also looked at. Vocational training, income generation programmes, support groups are also part of the programme. A demographic trend observed in the last few years is that as more and more fathers are dying of AIDS, the number of single-parent households, even child-headed households is increasing. Grandparents are having to be parents all over again.

The UN Development Fund for Women (UNIFEM) sees women as highly vulnerable to HIV because of the different forms of gender-based discrimination. "Issues such as mother-to-child transmission of HIV are very complex. The rights of the woman, mother and child have to be protected," says Chandni Joshi of UNIFEM. A supportive and enabling environment must be created for effective prevention and care. Community-based studies on gender and HIV/ AIDS supported by UNIFEM in different parts of the country reveal that women with infected husbands face tremendous stress as caregivers. As widows, they must take care of the family and children. The high cost of medication and poor health reduces family income. Social discrimination and unfounded fears among the extended family and community are high. There have been a number of cases where AIDS widows have been denied legal rights such as inheriting property after their husband's death. Many have been thrown out of homes.

Even as the HIV-positive healthworker at Delhi's Michael Care Home begins to fall sick, she reminds us how unprepared we are as a nation. Given the invisible nature of the epidemic, it is evident that what we see now is no indication of the extent of the problem. The fact that numbers are high, and geometric progression is the nature of the virus, both quality and quantity of services will need to be addressed. All this, as young women prepare themselves to face an added onslaught, a problem not entirely of their own making.

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