Treatmet in Tamil Nadu

[Guest guest]

New York Times, November 11, 2002

As AIDS Spreads, India Struggles for a Workable Strategy

By Amy Waldman

CHENNAI, 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.

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

of Mr. Gates, who will announce the foundation grant in Delhi on

Monday. Dr. , 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? "

Dr. 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 , 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. said. The

biggest problem, Dr. 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.

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. 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.