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AIDS in India, NRIs in the U.S.—Building Bridges

March 2007
AIDS in India, NRIs in the U.S.—Building Bridges

The first known case of HIV in India was reported in 1986. Twenty years later over 6 million Indians are HIV positive. Two million have been orphaned. The Gates Foundation, as well as other international organizations based in the West have started to pay a lot of attention to India. But when the money comes from the West, when policy is set in the West, and the work happens in India, it can produce its own set of challenges.

The Stop HIV/AIDS in India Initiative (SHAII) tries to coordinate Indian and international advocacy experts from its base in Washington, D.C., providing a bridge between grassroots organizations in India and funding and governmental bodies in the West by galvanizing NRIs into action. Dr. Vineeta Gupta, the director of SHAII has a unique background having both a medical degree and a law degree. She has been involved with the People's Union for Civil Liberties and been a Medical Services Class Officer in Punjab. She spoke about what NRIs can do to combat AIDS in India.

How did you end up in both medicine and law?

I was a good student and went to medical school in India. It was quite conventional. Then I was working as a government medical officer in slum areas. That was life-changing because I was very interested in human rights and started organizing slum women around issues like corruption in health systems and custodial rights. I ended up bringing public interest litigation and argued my own cases. I was very passionate about what I was doing and became more and more interested in law. In the end I resigned and went to school in Notre Dame (for a master's in international human rights). I think having a background in both medicine and law allows me to utilize both tools to have more of a human rights impact.

Is that missing in the current ways we deal with HIV/AIDS in India?

While working in public health I'd say why are we diverting from health resources to HIV/AIDS? You would see kids in line on a hot day but there were no doctors to give them immunization because the doctors had gone for HIV counseling. You cannot approach HIV as just a biomedical disease in a health vacuum. Someone diagnosed with HIV cannot share the news as if it was malaria. I realized that you needed to bridge the gap between a vertical approach and a rights approach. SHAII was founded to bridge this gap.

How did SHAII come about?

It came out of NRI volunteers. I'd worked with grassroots groups in the U.S. NRIs bring different skills and perspectives to the dialog. Some policies are international policies with an impact on India and NRIs can take a lead on that. Suppose a bill is coming up in Congress, groups here would know how lobbying works. Indian groups can give input that can then be translated into language that can work here. We try to provide resources and credibility to each other.

Most resources allocated to HIV come from the U.S. In a way D.C. controls what will happen in a small village in India. But policy is often devoid of consideration about grassroots realities, for example by pushing abstinence until marriage.

What is the impact of the fact that the HIV/AIDS work purse strings in India are often controlled in places like the United States?

The U.S. government has more resources and so it can dictate to the Indian government and sell policies we might not be happy with. U.S. funding agencies often don't have a clue to solving problems. They employ a few people of color but that is just tokenism for few are in decision-making areas. So the policies are not tailored to the way the situation is in India. In the nonprofit sector they control the agenda of NGOs in India by having satellite offices there. So there are basically three levels of funding fights going on.

SHAII was in the news around the Indian Patents Act campaign. Can you explain what happened?

In December 2004 the Indian Patents Act was passed. At that time the tsunami happened, but we still brought a lot of media attention to the issues. Our mission was to amplify the grassroots voice and create a supportive system at the NRI level. We needed to make the issue visible at the U.S. level since the U.S. was forcing India to change the Intellectual Property Rights against public welfare. SHAII and other groups launched a global campaign against the Indian Patents Amendment, which would have stopped production of generic medicines especially for HIV/AIDS.

We came up with an amazing website in 24 hours. Our campaign started in October 2004 and went on till May 2005. It had a huge impact on access to generic medicine because India is one of the largest global suppliers of generics.

What worked?

NRIs have a special influence on the Indian government. Sometimes 10,000 people on the road in Delhi might not be as effective as 200 people in DC. The NRI does not engage enough. We are socially and culturally conditioned to service programs. We give food to beggars but the policy advocacy part is missing though it sets the framework for service provision.

Is there a taboo element to getting NRIs involved in issues around HIV/AIDS?

There is a moralistic value system. There is no open arena available to talk about diverse sexual choices. I have been to speak about HIV in religious places here. I remember a woman crying as she told me her brother back in India suffered from HIV and had died. The family didn't disclose it and then her bhabhi contracted HIV and the family threw her out of the house with two kids.

I have worked in conservative villages and diverse religious communities. The approach always has to be non-threatening. You cannot shake the system right away. You cannot blame them. You have to accept that we all have some level of social conditioning and approach it more as a dialog.

I was struck that so many NRIs don't actually know any Indian with HIV/AIDS even though we hear all the time about the exploding numbers in India.

There is no dialog. I read a report that a 14-year-old had killed himself in Calcutta because the father had HIV. His suicide note said—my future is dark. AIDS is seen as the disease of the fallen. We disconnect ourselves from it by thinking it only affects the poor, sex workers, and truck drivers. In India studies show that HIV is spreading not just through sex, but through injections in hospitals.

To be honest, though, it's easier with the NRI than on the ground. People here see the disease as someone else suffering. So in a way you can give more because we all want to think of ourselves as more open.

What are some of the main impediments to HIV work in India?

My main problem is with a vertical approach. Funding comes from international organizations where no one has every worked in a village. I remember, in 1995, I was posted in a primary healthcare center as a gynecologist. They said, go to the middle school and talk about HIV. They expected me to go to a boys' school to talk about sexual behavior without ascertaining their level of understanding.

When something like abstinence until marriage is pushed in India it is counter-productive. The funding ends up setting the agenda without realizing its impact on gender inequality. The message within "abstinence until marriage" is that sex within marriage doesn't need protection. But more than four out of five new infections in India are coming within marriage or a long-term relationship. A recent survey showed that 90 percent of women with HIV/AIDS said they never had sex with anyone other than their husbands. So by pushing abstinence until marriage we risk propagating a risk factor because you can't ask for a condom within the marriage.

What do you think about the fact that now so much of AIDS work depends on the largesse of a few such as Bill Gates?

There is always the concern of accountability in the philanthropic approach when people's rights become the charity of few. Philanthropy can also undermine the state's responsibility. When it provides services, the state is accountable. When foundations become supernational, people lose and the state wiggles out of its responsibility.

There should be active engagement by communities around projects. We need to think about this whole philanthropic approach and how it's moving towards a charity framework and individual responsibility, which is very much a dynamic of the global North dealing with the global South.

Has the emphasis on prevention left treatment of people with AIDS shortchanged when it comes to the efforts of NGOs?

Prevention vs. treatment—there is no perfect answer. It's about balance. It's a difficult choice when you think there is a person whose quality of life you can improve or you can let him die and use the resources elsewhere. It's become an inspiration for us to mobilize more resources so we don't have to make that choice.

What would you say are some of the major issues around HIV/AIDS that need to be addressed?

There are 2 million orphaned or vulnerable children (OVC) affected by HIV/AIDS in India. There is no national policy on how to take care of them. It's a huge problem. No one wants to accept them even if they are not HIV+. We need more resources for that problem and the U.S. needs to make a special allocation targeted to OVC.

Generic medicine is a huge issue. Every year 60,000 kids are born HIV+ because of the lack of a few tablets. But the U.S. is pushing laws that will make medicines more expensive. Tuberculosis is already becoming drug resistant. If new drugs are patented, poor people cannot even think about treatment. Indian policy needs to protect generic medicines. We want USDTR and we need to protect generic medicines being produced in universities.

Violence against women is closely related to HIV. Women can't ask their husbands to use condoms, fearing violence. Violence is used to force sex as well. I met a woman who was brought to me by her neighbor. She seemed mentally challenged and had bite marks all over her. It turned out, she was being sexually abused by her father since the age of 4 when her mother died. So policies need to address that angle.

And we have to work in the U.S. and in India. It cannot be an either-or situation.


Sandip Roy-Chowdhury is on the editorial board of India Currents and host of UpFront, a newsmagazine show on KALW 91.7 produced by New America Media.

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