As AIDS Spreads, India Struggles for a Workable Strategy

By AMY WALDMAN

HENNAI, India, Nov. 8 — This is the sight of a wave, years in building, crashing onto shore.

Women with H.I.V. — plump women, skeletal women, always frightened women — fill two wards of the Tambaram tuberculosis sanitarium in the southern state of Tamil Nadu. With few exceptions, they are not the commercial sex workers who helped spread the epidemic in its early stages and who have since been taught that condoms can help curb it.

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Most of them are wives, or widows, infected years ago by their husbands, the only sexual partners they have ever known. Many have watched their spouses sicken, and die.

Now their turn has come.

Each month at this hospital, the Government Hospital for Thoracic Medicine and which has become the largest AIDS care facility in India, the number of patients with H.I.V. or AIDS, especially women, seeking care is on the rise.

The number of new outpatients with H.I.V., the virus that causes AIDS, has nearly doubled in the past year, rising to 1,151 last month from 613 in October 2001. From March 31 to August 31, the number of reported AIDS cases in the state rose to 22,826, from 16,677, by far the highest in the country.

With no more empty beds, the hospital in Tambaram, a suburb of this city, has taken to offering patients straw mats on the floor. "We never expected this," said Dr. S. Rajasekaran, the deputy superintendent.

Tamil Nadu, with a population of around 62 million, has been at the vanguard of the AIDS epidemic in India, the country with the world's second-highest number of H.I.V. cases. The state had among the country's highest rates of H.I.V. infections — but also led efforts to contain it through outreach to high-risk groups and other preventive means.

Now, with both opportunistic infections from H.I.V. and cases of full-blown AIDS climbing, Tamil Nadu faces a question that the country as a whole must confront: in a nation of limited resources, but where government is committed to providing basic medical care, what kind of investment can and should be made in caring for people who are already infected?

There is no easy answer, given that most states lag dangerously behind Tamil Nadu even in prevention efforts. But in this lush state, many of those who have led the prevention campaign are now starting to talk about care. They are arguing that India also needs to develop a better health infrastructure for those already infected, and that even if it cannot provide antiretroviral therapy to the sick, it can help them live longer, more productive lives.

The good news is that Tamil Nadu offers hope that with enough prevention, India, where the overall rate of infection remains a fairly low .8 percent among adults, can avoid an Africa-like pandemic. After a decade of focusing on high-risk populations like truck drivers and sex workers, Tamil Nadu's rate of antenatal infection, the most reliable way of tracking the epidemic's spread to the general population, appears to be stabilizing or even dropping.

But without similar efforts at prevention in other states, many experts here and abroad fear the worst. India now has, by conservative estimates, four million people infected with H.I.V., and the United Nations warned this year that India could soon surpass South Africa, where nearly 5 million have H.I.V., in having the most cases in the world. A recent analysis by the United States National Intelligence Council predicted that India could have as many as 25 million by 2010.

Recognizing that India's epidemic is at a pivotal point, on Monday the Bill and Melinda Gates Foundation will announce a $100 million commitment over 5 to 10 years to combat the spread of H.I.V. and AIDS in India. As in Tamil Nadu, the foundation hopes to focus especially on prevention among mobile populations — sex workers, truckers, migrants — who carry the virus from state to state.

But the long lines snaking inside the outpatient clinic at Tambaram, the forest of outstretched hands waiting for medicines that will help them stave off illness, the direly weak 25-year-old widow whose 9-year-old orphan-in-waiting sleeps on the cold floor at her side, all suggest that India will face a competing, and increasingly urgent, claim in its approach to AIDS.

"I heard he doesn't want to give for care," said Dr. Suniti Solomon of Mr. Gates, who will announce the foundation grant in Delhi on Monday. Dr. Solomon, who runs the YRG Center for AIDS Research and Education in Chennai and diagnosed Tamil Nadu's first H.I.V. case in 1986, added, "What I'm going to try to tell him is, unless you fund care, how is prevention going to work?"

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Dr. Solomon used to argue that prevention was all that mattered. She began rethinking her position as the price of antiretroviral drugs dropped, and as studies showed that over time, they save money by reducing hospital visits and lost work days. She has become such a strong believer in the notion that H.I.V. is a disease that can be lived with that she has started helping couples safely conceive a child even though one or both has tested positive.

There is also the fact that prevention efforts in Tamil Nadu are at a difficult juncture. The successes of the groups that tackled the AIDS epidemic, like the Tamil Nadu State AIDS Control Society and the AIDS Prevention and Control Project (APAC), which was financed by the United States Agency for International Development, were concentrated among high-risk populations.

Spending about $6 million a year, they used peer educators and advertising, among other methods, to spread the word about safe sex and condom usage. The proportion of commercial sex workers using condoms increased to 88 percent in 2001 from 56 percent in 1996, according to an APAC study, and among truckers and their helpers to 78 percent from 44 percent.

But the patients who are coming into the Government Hospital for Thoracic Medicine are members of populations that had been considered low-risk. At least a third of the new patients are women, most of them monogamous housewives. Seventy-two percent of new cases are from rural areas, once thought to be largely shielded from the epidemic. In 1996, the hospital had 10 cases of children with H.I.V.; now it has 250.

Reaching sex workers concentrated in a red-light district is one thing. Reaching, in a deeply conservative society, into not just diffuse villages, but the marital home, to teach infected men to start using condoms and their wives to demand that they do so, is quite another.

Dr. Bimal Charles, the project director for APAC, said he was trying to figure out how to get condoms to rural areas so that husbands could discreetly buy them to use with their wives. Right now, "someone who goes to buy is a marked person," in a culture where the stigma of AIDS remains intense, Dr. Charles said.

The biggest problem, Dr. Charles said, are "those who are positive and do not know it." Men who were not tested passed it on to their wives. Women not tested passed it to their babies.

Most of the women in the wards were not tested even after it was clear their husbands were H.I.V.-positive, but rather only when they became seriously ill.

His organization now wants to encourage more voluntary testing. But even if testing becomes more widespread, what happens when a positive result comes back?

Many private doctors and hospitals refuse outright to treat H.I.V./AIDS patients. One study of rural medical practitioners in Tamil Nadu found that of the 99 who said they had "treated" an H.I.V. or AIDS patient in the previous year, 80 percent had simply referred the patient to a government hospital and 9 percent had actually refused to treat the patient at all. And even many government hospitals, which in theory provide free care to everyone, are unwilling or unable to treat H.I.V./AIDS cases.

So most poor patients are sent to the Government Hospital for Thoracic Medicine in Tambaram, which began admitting H.I.V.-positive patients in 1993. More than one-third of new H.I.V. patients are coming from Andhra Pradesh, the neighboring state, where infections are spreading like wildfire.

The Tambaram hospital feels like the backwater tuberculosis sanitarium it once was. Pigs roam freely through its run-down grounds and open-air wards. Over the summer, three H.I.V. patients committed suicide by hanging themselves from the trees.

Most patients, some 300 a day, come for outpatient treatment, a monthly supply of Siddha — an indigenous form of medicine developed in Tamil Nadu whose efficacy in fighting H.I.V.-related infection has yet to be clinically proved. The drugs are provided free to patients, at a cost of about $2 a month per person to the government.

The hospital offers antiretroviral therapy only for staff members who may have been infected, and, for one or two months to patients on the brink of death — right now, about 50 to 60 out of 300. The cost is about $30 a month per patient.

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The decision to spend money to give respite to the near-dead reflects the struggles of caregivers overseeing a de facto hospice instead of a hospital. Asked what the point was of giving antiretroviral therapy for only a month or two, Dr. Rajasekaran, the deputy superintendent, replied, a touch defensively, "Saving a life is the point."

In the future, Dr. Charles of APAC says more care will be "home-based," intended to give a "dignified end" to a terminal illness. "There's no way you can start care centers in every community," he said.

But activists like Rama Pandian, who has been H.I.V. positive for a decade, see that as shirking responsibility for developing a public health system that can deal with AIDS.

"Don't leave the burden on the community, on the family," he said, and allow doctors and hospitals to continue to avoid treating AIDS patients.

For now, the burden is mostly on the individual, particularly women whose husbands have already died.

In a village of 300 families about 100 miles east of here, villagers say that the army man may have died of AIDS. The truck driver almost certainly did, and Shekhar the cow trader definitely did. That was why they insisted hospital workers dig up his body after he died and cremate it.

Now some say the cow trader's wife, Shanthi, has H.I.V., too. In front of her neighbors, she denies it, blaming her weakness on a heart problem, her husband's death on his drinking.

But in the privacy of her own barren, one-room hut, she breaks down. Her husband died of AIDS six years ago. She tested positive for H.I.V. seven months ago, after she became sick. Her clothes are growing looser, her skin more lesioned. Her panic over her children's fate is mounting.

Her greatest concern is that no one in the village know what is making her ill, even if they suspect. "If they know, they will isolate my children," she said.

The main thrust of the counseling she received after testing positive was this: "If you want to stay in your village, don't tell anybody." She earns 300 rupees — about six dollars — a month at a shoe factory, and is spending 60 of them on an ayurvedic "anti-infective therapy" prescribed by a private doctor. Similar drugs may be free at Tambaram, but she cannot travel there — although in all likelihood, as the disease progresses, that is where she will end up.

For now, in the dimness of her thatched hut, she whispers the rest of what the counselor told her: Death is natural. It comes to everyone. Do not be afraid.