The Hindu Business Line : Act positive

Funds coming in for HIV/AIDS prevention and control need to be monitored, as also programmes giving out free medicines to HIV/AIDS patients, as there are allegations that these are being sold.

Sekhar is curled up on a mat, his head on his mother's lap. A single parent, she has been running the family through difficult times. The five-year-old listens distractedly to his mother and with little understanding of her problems, goes back to the security and comfort of her lap. A comfort that Sindhu, his mother, can still give him.

Sindhu was asked to leave her in-laws' house after her HIV-positive husband's death. Three years later, Sindhu lives with the reality that she too is HIV-positive and so are her three children. "When my husband's life came to a full-stop, I had to start doing things myself," she says of her struggle in running her household.

The children — an 11-year-old girl, an eight-year-old boy and Sekhar — are in good health now and go to school, she says. Sindhu works as a cook in suburban Mumbai and dressed in a white sari printed with blue and grey flowers, bears no trace of illness.

The harsh reality

There are over 5.1 million people living with HIV/AIDS in India. The challenge is to "plan for HIV-positive people like Sindhu," says Vijay Nair of Udaan, an NGO. "Their husbands are not alive and there is no other family support. The woman bears the burden of running the house, besides facing the reality that she and her children are all (HIV) positive. What happens when the woman's health fails? What happens when the children start falling ill too and the already unwell mother cannot support them," he asks.

It is a frightening thought for infected parents, but they cling on to the hope provided by their support-groups who now mean more to them than their families.

Renuka's four-year-old son was stopped from going to school after his father's death. "Neighbours got to know that the father was positive," says Renuka, recalling why she had to take her son out of school. She too is infected and her little son is too ill to be taken out of the house. The 27-year-old works as a domestic help, but her earnings are meagre.

"It is a year since my younger son is not well," she says. But the young mother and her child do not avail of the free anti-AIDS drugs given to patients at Government hospitals. "It is too expensive," she says. But are the drugs not free? "Yes, the medicines are free. But they are given only after the CD4 count (in the blood) is taken. These tests cost about Rs 750. My son needs tuberculosis medicines every day. But the free Government programme provides one every alternate day. I will have to pay Rs 1,000 for the rest," she says helplessly. Her earnings: Rs 800 a month.

Helplessness is writ large on Sudha's face. Her lean frame and conversation interspersed with coughs indicate her failing health and the disturbing fact that medicines are not helping her anymore. She lives with her family, despite the humiliation of not being allowed to mingle, as they are the only support for Sudha and her children.

"My youngest child died even as I was looking after my ill husband," she says. She has two other children and is petrified about their future. "My neighbours do not allow me to sit outside the house and my brothers don't want me to live in the house," she says, her voice barely audible.

Maadhu, a community-worker, is HIV-positive and so are her two children. They live on a meagre Rs 800. But as her son and daughter, dressed in bright blue uniforms, enjoy the simple pleasures of childhood, Maadhu knows the inevitable.

Some day soon, her health will fail. One day surely, her children will have to be told that they are unwell. But what support will she and her children have then, is something that she tries not to confront.

Udaan tries to support these families whose spirit is all but broken by the illness. They support about 491 people, says Nair. Of the 40 children looked after by Udaan, six between the ages of two and 14 have already died.

Paediatric versions of the AIDS drug

The Central Government along with the states has implemented a programme to provide free AIDS medicines. And this year, drug companies like Cipla and Emcure have come out with their paediatric versions.

"Paediatric versions are being given at our hospital since August," says Dr Alaka Deshpande, who heads the Department of Internal Medicine at Mumbai's State-funded J.J. Hospital. About 2,700 patients, including 50 children, are treated here. The national free medicines programme by the National Aids Control Organisation (NACO) was first started here. Though too early for doctors to comment on the efficacy of paediatric AIDS medicines, she says that the children are responding well.

Dr Mamta Manglani, Professor of Paediatrics, who treats paediatric-HIV at Mumbai's Sion Hospital, hopes that the convenience that paediatric medicines offer will improve compliance. The regimen for AIDS drugs for adults and children requires a high degree of adherence to prevent patients from developing resistance.

She points out that treating opportunistic infections like TB that affect a child whose immunity is already broken down by HIV/AIDS is tricky. Unlike in an adult, a child can be treated with Rifampicin for TB, but cannot be given an anti-retroviral (ARV) or AIDS medicine alongside, she points out.

Intervention for pregnant women

Intervention programmes for pregnant women to prevent the transmission of infection from mother to child seem to be successful in India. But doctors caution that resistance to anti-retroviral Nevirapine is being observed in mothers and this would require them to be treated with second-line AIDS medicines, which are expensive and are not yet part of the free medicines programme.

Dr Mamta cautions against the use of certain protease inhibitors in the first trimester of pregnancy, as these are not time-tested. Dr Duru Shah, consultant obstetrician and gynaecologist, underlines the need to protect the mother, along with the baby, in these programmes.

J.J. Hospital's Dr Deshpande points out that while the free AIDS drugs programme may not be flawless, it has helped several people who could ill-afford these medicines.

Create better awareness

Dr Shah feels that HIV/AIDS needs to be discussed much more actively among the youth.

Udaan's Nair says that the Centre needs to monitor how funds coming into the country for HIV/AIDS are being utilised. He alleges that some organisations sell ARVs, when they should be giving the drugs free. Patients are poor and too scared to ask; some people are willing to take any money that patients are able to pay, he alleges. His colleagues also point out the need to address the cost of other tests essential for HIV/AIDS patients.

(The names of the positive-mothers and children have been changed to protect their identity.)

Picture by K. Ramesh Babu

Article E-Mail :: Comment :: Syndication :: Printer Friendly Page