If I go back to Andimadam, India, next year, I will look for the little girl with AIDS who wore a dirty orange dress and didn't smile.
She wasn't the only child at this month's meeting of about 60 HIV-positive people in the village, but she was different from the others — she was sad and subdued. She came to the meeting with her grandfather who asked a question, translated into Tamil — the local language — by an interpreter.
I thought: Who's taking care of her now? It seemed to me he wasn't equipped to do so.
He didn't take his granddaughter to Tambaram Hospital in Chennai earlier in the month for her AIDS medications because he had no money. He didn't have $7 for the one-way, six-hour bus trip.
But no one can afford to skip anti-retroviral therapy treatments because a miss can quickly increase the risk of becoming resistant when the therapy resumes.
I sat in on the meeting with D. Selvam, an Indian social worker from the village, AIDS researcher Koen Van Rompay of UC Davis, and Mirriam Rafiq, a UC Davis graduate and public health worker from San Francisco. I looked at the group of men, sari-clad women and children sitting on mats on the floor. All were thin, but few of them looked ill. Most were being treated for AIDS. They looked resigned and waited patiently for the monthly HIV-positive meeting to begin.
"I help develop better drugs to treat HIV infections and research vaccines," he said. He described how he attended an international AIDS conference in India in 1997 and met Selvam, the social worker who runs his own nonprofit called READ, Rural Education and Action Development.
Selvam invited Van Rompay to visit READ in Andimadam, south of Chennai, and an important friendship resulted.
"I've gone back to India every year, sometimes twice a year, ever since," Van Rompay said. "I go to India more frequently than I go to San Francisco."
Shocked by the poverty he witnessed, Van Rompay formed a nonprofit organization, Sahaya International, in Davis (www.sahaya.org) to help funnel small amounts of money to his Indian counterpart. A few dollars can make a big difference. Fortunately, Van Rompay and other volunteers also wrote and received a large grant from the Elton John AIDS Foundation in London.
Van Rompay of Sahaya and Selvam of READ — the Belgian and the Indian — have formed an efficient partnership promoting a variety of projects from sponsorships of AIDS orphans to AIDS education efforts.
"Since HIV work is close to my heart, I want to write grants to help," Van Rompay said.
Van Rompay returned to India in January to write a progress report on the implementation of the Elton John grant, which was designed to spread the word about AIDS prevention by training barbers, outreach workers and leaders of women's self-help groups to talk about what AIDS is and isn't.
We visited local barbers who'd been trained in AIDS prevention and had taken that knowledge — and boxes of free condoms — back to their one- and two-seat shops.
The barbers told us they talked to their customers about sex and AIDS. At one shop we saw a strange juxtaposition of symbols — a wooden penis model placed on a box of condoms next to a statue of the Virgin Mary.
The Tamil Nadu area in Southern India is predominantly Hindu but has a Catholic presence, too. Concern about the spread of AIDS is shared by everyone and it is acknowledged to be a growing problem, although the extent of the disease is hard to gauge.
Next to assorted hair-cutting paraphernalia in the barber shop was a graphic flip-chart distributed by peer health educators that helped explain AIDS transmission and prevention to the illiterate.
"You have to get them to talk about sex," Rafiq said. Talking about sex leads to talk about AIDS and AIDS prevention and the correct use of condoms — the penis model is used to demonstrate proper condom use.
Prevention and care have to be linked, he said. As part of the HIV awareness programs, we try to encourage people who may be HIV infected to be tested so they can then access available resources for medical and social support, he added.
Last year, about 15 people came to the monthly meeting of the HIV-positive network. At that time, READ could afford to give each person about $8 for extra food and travel expenses. But this year the network grew to more than 75 people (not all of whom attend the meetings), including the little girl in the dirty orange dress.
That's good news — word is getting out about AIDS at the village level. People who don't feel well are getting tested, and those who test positive have access to some limited health care.
But Selvam and Van Rompay had to deliver bad news at the meeting.
"Because there are so many more people, we can't give them money," Selvam said. "And we're afraid they won't come to the meetings unless they receive money."
Instead, Selvam and Van Rompay encourage network members, many of whom are destitute due to the ravages of AIDS, to apply for micro-loans through READ. About a dozen people — mainly women — have received the no-interest loans to buy goats, sheep or cattle. One woman bought a sewing machine.
An old woman who cares for her HIV-positive granddaughter stood up and adjusted her sari.
Another woman bought a milk cow and another described how she's begun processing cashew nuts out of her home for income.
"I am very happy that you are able to earn some money," Van Rompay said. He is concerned that AIDS impacts members of the positive network in many ways, not just in terms of their health but in terms of their ability to make a living.
He said Sahaya and READ received a grant for more micro-loans from Gilead Sciences, a Foster City drug company.
"So I hope those who are looking for an income-generating activity will meet with READ staff and choose something," he said.
"We also at Sahaya have a sponsorship program and will continue trying to find sponsors for children from HIV-affected families," Van Rompay said. "There are many people in America and Europe who care deeply about you and your children."
"Better drugs are being developed with fewer side effects," he said. "There's every good reason to hope that better, less toxic regimens will soon be available."
A man raised his hand to speak. Selvam translated his remarks.
"I got sick in 2002 and began spending all my money on local doctors until there was no money left. I have three children," he said. He added he can't go to the local tea shop any more because they know he is sick and won't serve him.
His story is typical in one way, Selvam said later. None of the people in the village will come to READ for help or accept Western medicine until they have exhausted local remedies. By the time they come to READ, they're not only sick but they're broke. That's why READ encourages members of the network to take out small business loans.
But Van Rompay and Selvam were disturbed to hear that a tea shop owner turned away someone infected with AIDS. READ sponsors a street theater troupe in an effort to reduce stigma. The troupe goes from village to village describing how AIDS is and isn't transmitted.
"Let's have the street theater group give a performance there," suggested Van Rompay.
A mother spoke up. She and her daughter, who is about 9, both have HIV and are both taking medicine. They are feeling fine with no side effects.
This woman represented one of the few members of the group who didn't complain about feeling physically sick and wasn't worried about supporting her family.
There are other success stories, too, as several families in Davis have been sponsoring HIV-positive children.
We have three children who are doing beautifully and are very healthy on anti-HIV medication thanks to sponsors in Davis, Van Rompay said.
Several people who have HIV are not yet sick enough to qualify for medications.
"I hope those of you on waiting lists will soon get started (on medications)," Van Rompay said. "But there are other things you can do in the meantime to improve your health through sanitation and hygiene," he said, describing a home healthcare manual.
The manual came to READ through another member of the Sahaya board of directors, Tom Furtwangler of the International Training and Education Center on HIV based out of the University of Washington.
Furtwangler visited Andimadam earlier in February and stayed at the Sahaya guest house in the village with his wife and daughter. He brought with him good news about the manual.
"I-TECH came out with a home-based care manual now available in Tamil," Van Rompay said. "We will make it available to you whether or not you are HIV-positive."
The manual instructs caregivers and heads of households on simple ways to help AIDS patients stay as healthy as possible using available resources. It describes how to keep drinking water clean, how to treat children for diarrhea and how to prepare healthy meals.
Van Rompay also asked the HIV-positive adults if they talked to their children about AIDS.
"We don't talk about this with adults, how can we talk to children?" a man asked.
"It's a problem," Van Rompay agreed. "But in reality, children are often aware of what's going on and feel frustrated no one is talking to them or answering their questions."
Van Rompay showed the group a book about AIDS written by five young girls, published in Canada.
"Perhaps we can make a similar book if your children are interested in helping," he said.
"This is a very good idea," a woman in the group said.
"It breaks my heart that we can't offer you money, but keep coming to the meetings to learn about trainings and updates on the grants we apply for," Rafiq said.
"I am also heartbroken that demand has exceeded our means, but we'll do our best," Van Rompay pledged.
The meeting broke up with a distribution of toys donated by people in Davis for the HIV-positive children.
As Selvam and I walked out the door, he whispered to me: "We are paying travel and food expenses for those who came here today, about 100 rupees each (less than $3); otherwise I'd feel too guilty. Don't tell Koen."
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