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Section: India
Published: January 2004

India's AIDS Tragedy Highlighted at World Social Forum
By Richard Stern*

(Richard Stern is an AIDS activist based in Latin America who attended the World Social Forum in India. He does not pretend to be an expert on the AIDS crisis in India after spending just 10 days in Mumbai, but feels compelled to at least place certain issues into a public forum with the hopes of stimulating further discussion and debate)

As a country overwhelmed by poverty as well as a myriad of other social problems, India's AIDS tragedy is hard to focus on, and the magnitude of the situation is only just becoming visible. The World Social Forum and the International Health Forum for Defense of People's Health, held in Mumbai from January 14th-21st helped to place AIDS in the national spotlight, albeit briefly.

Among India's many other overwhelming problems there are an estimated 4 million People Living with HIV/AIDS. In a country that has over 1 billion people, the "incidence" of AIDS is still relatively low, less than one half of one percent, but the numbers are still staggering. Care and treatment are virtually non-existent. According to Sanjay, a Person Living with HIV/AIDS (PLWA) "more than five years ago, the government promised to begin providing medications for opportunistic infections, but they still haven´t done so. There is no Bactrim, no Fluconazole."

Ironically, India is home to CIPLA, Ranbaxy, and Aurobindo, all of whom export generic anti-retroviral medications to other countries, but even at the price of less than $1 per day, these medications are unavailable to Indians who need treatment now, an estimated 300,000. An average salary for a working class Indian in Mumbai is $30-40/month and most people with AIDS are unemployed, and have to rely on charity just for food.

Government Promises Scale-Up

The government has recently announced that it will begin providing treatment for 50,000 people beginning in April of 2004, but activists I spoke to were skeptical of the government's commitment to follow through According to Vivek "they have not allocated any budget for the purchase of these medications, so how are they going to buy them? We have not heard of any concrete plan to implement this promise."

The NGO "Communication for Health India Network" (CHIN) raised similar questions in their Newsletter distributed at the World Social Forum. CHIN voiced several concerns including "What are the plans for making available low cost second line drugs?, and "Would health personnel be trained adequately enough to handle problems related to drug distribution such as laboratory, and the delivery system itself and handling side effects?" They also referred to issues related to ARV availability for women and children, gender issues, confidentiality, and criteria for selection of clients to receive free drugs.

The biggest concern that this writer has, after witnessing innumerable announcements by governments about scaling up plans that were never followed through on, is "will this really happen in India or is it a placating strategy, designed to silence activists and create a false impression that something meaningful will occur?"

The NGO Coalition SAATHI (Solidarity and Action Against HIV infection in India) presents a rather pessimistic overview of the AIDS panorama in India. According to the SAATHI website:

  • Care to PLHA is refused even in governmental hospitals giving excuses such as lack of "adequate infrastructure" and lack of 'expertise' in treating PLWA.
  • Private hospitals almost always deny treating PLWAs.
  • Confidentiality of the patient's HIV status is not maintained in government and private hospitals.
  • Drugs for opportunistic infections are not always available in government hospitals.
  • Surgical treatment is not provided to PLWA even if there is an absolute necessity for surgery.
  • Even in centers which are treating PLWA, the basic facilities are inadequate.
  • Emergency/critical care for people living with HIV/AIDS is non-existent.

In a widely publicized speech delivered at the Indian National AIDS Conference in Chennai in late last year, activist Dr. Subha Ragahavan demanded that the Indian government respond to the crisis in care and treatment. "Treatment is a basic human the past 3-4 years I have lost seven of those young men who went to school with me. How can they not be my family, they work and serve my village and take care of my family." She added that "we are the manufacturer of cheap drugs for the whole is unacceptable that the very same drugs we export to the whole world are not available at affordable prices in India."

Raghavan finished by demanding that treatment access be made available by July of 2004 in India, and asked for support from UNAIDS and the WHO "3 x 5" team in implementing a plan: "We demand that...WHO, UN agencies, Bi-lateral partners, and Foundations work together in equal partnership with civil society and People Living with HIV in developing a comprehensive plan for immediate scale-up of ARV treatment in India."

Perhaps as many as a thousand people in India do receive anti-retroviral medications that are provided by NGO's, including the Freedom Foundation in Bangalore, and the Naz Foundation in New Delhi.

Streets of Mumbai

As an outsider who came to find out about AIDS in India, it was impossible for me to ignore other problems that are much more visible. During my daily 75 minute taxi ride from my Hotel to the site of the World Social Forum in Mumbai, it was absolutely overwhelming to see the number of homeless families who simply camp out by the side of the Western Express highway and on the sidewalks of the major thoroughfares that wind their way through Mumbai. Returning along the same route at night, it is as if the homeless turn to corpses as they lie fully wrapped in blankets along the sidewalks and roadsides. And aside from those who are homeless are thousands of others who seem to have put together several pieces of tin and some wood and plastic to create a makeshift shelter. Peering into some of these shelters at traffic lights I could see five or six children and their mother, cooking something in a pot over an open fire fueled by sticks gathered from nearby bushes.

At the World Social Forum, and the International People's Health Forum which preceded it, AIDS was a topic of concern in many presentations. The Indian "Lawyer's Collective" of Mumbai sponsored programs focusing on intellectual property issues which threaten the future ability of companies such as CIPLA to continue to
export their medications on the world market. According to Anand Grover of the Lawyer's Collective, India must enact TRIPS compliant patent legislation by the end of 2004, and this may mean that CIPLA will have to respect local patents that have been filed on anti-retroviral medications, meaning that they could not export their products. Up until now, Indian law did not recognize any patents on medications, only on "processes" for producing the medications. Thus, any company that could develop a new process for producing a medication could do so. But the World Trade organization is requiring India to enact a law that will fulfill the requirements of the TRIPS agreement.

Even as the World Social Forum was concluding, local English newspapers carried a story about an apparently precedent setting case won by Anand Grover in the High Courts of India, in which a woman who had been fired from her job in an insurance company for being HIV+ was ordered to be reinstated within one month. But discrimination even among medical personnel is described as being rampant. Indira from Chennai in South India described how an AIDS support program in that city fired all of its HIV+ employees. Many PLWA stated that most physicians will refuse to treat a person if they know the person is HIV+.

WHO "3 x 5" actions unclear for India

The World Health Organization sent several members of its Core "3 x 5" (3 million people on treatment in developing countries by the year 2005) to Mumbai for the two Conferences, but it was clear that the 3 x 5 plan, does not address India's country specific realities, and that at the moment it is a "theoretical prescription" for India. Craig McClure and Ian Grubb from the WHO Geneva Core Team gave presentations at a Plenary Session attended by 800 people held January 14th, at the International Health Forum in Defense of People's Health. However, there was no participation in this event from India based staff of the UN Agencies who are focused on scaling up ARV access. So the local situation remained very unclear, and there is no evidence that any of Subha Raghavan demands listed above have been addressed in India.

In other developing countries during the history of the AIDS epidemic, WHO/UNAIDS staff have, with notable exceptions, clearly failed to take a pro-active role in supporting goverments in implementing treatment, and have tended to identify more with elite government decision makers than to push these leaders to help poor people. Given the fact that India has by far the lowest priced ARV's in the world, it is indeed shocking that, seven years after ARV access became virtually universal in Europe and the United States, the government of India still does not provide treatment.

Delays in Global Fund Implementation

However, perhaps the biggest tragedy in India is the failure to even begin to make use of extensive resources that have already been allocated by the Global Fund for AIDS, Tuberculosis and Malaria for India.

The Global Fund contract for the proposal relating to HIV/AIDS, approved in Round Two (January of 2003) still has yet to be signed. Although the proposal itself is for about two hundred million dollars, including all components, it only provides treatment access for about 19,000 people over the five year period (roughly 7 million dollars based on current costs of ARV access in India) According to current estimates as many as 300,000 people in India need treatment access now, and over a million will be in need with five years. As such, the proposal does not reflect the Global Fund policy of funding proposals that will significantly scale up treatment availability for people living with HIV/AIDS. Most Indians with AIDS will not benefit from the proposal.

Other elements of the AIDS infrastructure that would be funded by the proposal such as voluntary testing and counseling cannot be put into place until the proposal is signed and funds are disbursed, further delaying any treatment access scaling up that would come as a result of the proposal. A representative from PNUD in India, who attended the session sponsored by the Lawyer's Collective told me that there is virtually no infrastructure related to scaling up ARV access in India, and that the infrastructure would need to be in place for treatment access to begin. He defended that fact that only about 5 percent of the Global Fund proposal will actually go for purchase of anti-retrovirals, claiming that the government is simply incapable of providing treatment to a large number of people. When I reminded him about Paul Farmer's work in rural Haiti and its success, he insisted that Haiti has a more developed health care infrastructure than India.

Other activists present in the Forum were angry about the lack of emphasis on ARV access in the GF proposal, and claimed that they were never consulted about possible input into the proposals presented by the CCM to the Global Fund.

The Global Fund CCM seems to be very much dominated by the government, in the sense that few HIV+ Indians I spoke to were even aware of its existence, or the resources it potentially may have provided or could at least begin to provide. The 4th round of proposals for the Global Fund will close in April, and there is a movement among activists in India to submit a proposal focusing on ARV access. But one has to wonder what
will be the Fund's reaction, given that India has been unable to even begin to make use of nearly $200,000,000 that has already been approved.

Activists from TAC in South Africa, Healthgap in the United States, as well as from Brazilian NGO's, were present at activities during the World Social Forum, and discussed implementation of collaborative actions that would provide support from the International Community to Indians living with HIV.

Compounding India's AIDS problem is that fact that homosexuality, even among consenting adults, remains illegal, meaning that most gays, lesbians and transgendered people remain hidden which compounds prevention efforts.

Paradoxically, the streets of Mumbai remind one, at least superficially, of San Francisco's Castro street gay district, in the sense that it is culturally acceptable for men to walk down the street hand in hand. In a half hour walk through the crowded Colaba district, I counted at least 30 male couples, generally in their teens and 20's, walking hand in hand, but in Indian culture this is completely acceptable behavior for heterosexuals.

The extermination of Men who have Sex with Men in India

More overt homosexuality is not visible in bars or other socially tolerated venues, but is dramatically visible at the urinals in the huge restrooms in the commuter railroad stations that wind their way through Mumbai. There seems to be a section reserved for "cruising" among gay men, and there were dozens of men presumably "seeking sex with men" present at the Churchgate station men's room during rush hour one evening. Equally visible were many men who were obviously cruising a darkened section along the beach just to the South of the famous Taj Mahal Hotel in Colaba. So if Indian authorities, who tend not to visit such places, try to deny the existence of a substantial community of men who have sex with men, they are sorely mistaken.

According to "Fridae" an Asian Gay and lesbian network, there is a whole gay culture associated with the railroad system. "Tuesdays is for Dadar railway station...Wednesday is for Bandra station, platform one booking counter...the crowd here tends to be what the snobbish upper crust of Mumbai would refer to as the lower classes...on the express trains, the second to last compartment is often the cruising section of the train."

Mumbai, a city of 14 million, has only one gay bar that is only open one night a week, but there is an underground network of contacts and parties and there are several gay associations as well. But the law against "unnatural acts," enacted by the British in 1871, carries stiff penalties, and, even if rarely enforced, casts a deep shadow over India's gay community which is highly repressed by culture as well as law.

According to Indian gay activist Ashok Row Kavi, Director of the Humsafer Foundation in Bombay, (quoted in an interview written by Perry Brass in Gay Today) "Indian gays are a product of Indian civilization. We will be reflecting all the contradictions of Indian Society....Gay men in huge numbers are infected. I estimate over 60 percent HIV prevalence in the 520,000 Men-Having-Sex with Men sector in Bombay. But they are dying futile, unsung deaths."

According to Row, the Indian term for gay sex "is 'musti,' or mischief. and young Indian boys who engage in gay sex are often joked about....Musti is considered something that takes place along with marriage but never in place of it. Musti, then is something to be joked about, it is never serious, and the deeper romantic feelings that Western gay men often have about their relationships are alien to Indian culture."

Rainbow Planet, a Coalition of NGO's that supports sex workers as well as sexual minorities in India, held a well attended plenary session at the World Social Forum in which various sex workers, as well as transgendered, lesbian and gay people gave testimonies as to the abuses and discrimination they are constantly subjected to.

*Richard Stern
Agua Buena Human Rights Association
San Jose Costa Rica
Tel/Fax 506-2280-3548


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