Newsgroups: soc.culture.indian Path: ultb!ultb!glp5941 From: glp5941@ultb.rit.edu (Greg Pratt) Subject: AIDS Epidemic in India [ARTICLE] Message-ID: <1991Dec17.191059.15973@isc.rit.edu> Keywords: AIDS, discrimination, medicine Sender: news@isc.rit.edu (USENET News System) Nntp-Posting-Host: ultb Reply-To: glp5941@ultb.rit.edu (Greg Pratt) Organization: Rochester Institute of Technology, Rochester, NY [USA] Date: Tue, 17 Dec 91 19:10:59 GMT The following article was typed in from Issue 590 (November 19, 1991) of _The_Advocate_, a well-known gay and lesbian magazine in the United States (and without their permission). Naturally, there may be a couple of unresolved typos (I already found one, but it was copied verbatim from _The_Advocate_; they apparently screwed up the spelling of "Gautam"). This article is a little scary. Again, I am sure that there are many people who will shrug it off, but hopefully some of you out there might become at least a little more aware of what is happening in India, right under the noses of many unsuspecting people. This article is quite long; however, PLEASE read it as you are able. I'll refrain from any further comments for now, as I would like for people to judge it in its own right. However, please keep in mind this article is, even in my view somewhat biased (not that it isn't a little bit needed). _The_Advocate_ is mainly a gay publication, and because the gay community has been hit so hard by AIDS, most people within that community (including myself) do not have a lot of pity on people who are looking to get rid of AIDS by isolating the people who "supposedly" are the primary carriers. (Send me e-mail rather than a public reply if you wish to debate that opinion specifically.) India Fights AIDS with Prisons and Chains ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Ignorance Keeps South Asia at the Mercy of the Epidemic by Arvind Kumar Churachandpur is a small, sleepy town about 40 miles south of Imphal, the capital of Manipur State in India. This mountainous region in the remote, easternmost part of India lies on the border with Myanmar (formerly known as Burma). In between the heavily forested hillsides are rich, fertile valleys full of paddy fields, where heavy monsoon rains create an ideal environment for growing rice. With only 2 million residents, Manipur is one of the least populated states in India. The problems of poverty and overpopulation that plague the rest of the country do not seem to effect Manipur quite as much. But in Churachandpur, the administrative center of the Manipur South district, there are other problems. The Gamnaum Christian Home in town holds some 85 patients, all of whom have tested positive for HIV, the suspected AIDS virus. At this rehabilitation center, something is desperately wrong. Here the patients spend their days and nights in chains. Their hands and feet are shackled to prevent escape. There is no treatment, no therapy for them -- only prayers and lots of copies of the Bible. This is a privately run medical care facility funded by one of the many evangelical Christian organizations that operate in India. Intravenous drug addicts are supposed to receive care and treatment here. None of the inmates have developed full-blown AIDS. They have only tested positive for HIV. It is generally known that merely testing positive does not mean the individual will develop AIDS immediately. But medical knowledge of this sort is not widely available in Churachandpur. The authorities at the Gamnaum Christian Home say they are afraid that the inmates might escape, go back to drugs, engage in unsafe sex, and further spread the disease. Hence the shackles. There are big and small Churachandpurs all over India, where HIV-positive men and women are being denied treatment and jailed. People suffering from full-blown AIDS are dying because they are being refused treatment of any kind. LITANY OF EVILS ~~~~~~~~~~~~~~~ At the All India Institute of Medical Sciences (AIIMS) in New Delhi, India's premier hospital and medical institution with the best doctors and the most advanced facilities for medical care and treatment, there has emerged a pattern of AIDS phobia and discrimination. Senior doctors at AIIMS were scheduled to perform a lifesaving operation on an African envoy on Jan. 15, 1990. However, on finding out that the patient was HIV-positive, doctors refused to perform the operation, an organ transplant. The envoy died five days later. The _Times_of_India_ newspaper broke the story on Jan. 19, 1990, and it created an immediate uproar. The Health Ministry was force to launch an inquiry into the incident, but little came of it. Policy at the hospital remained unchanged. When Venit and Rohit Oberoi, two brothers who have suffered from hemophilia since birth, became infected with HIV in July 1990, they were referred to AIIMS, which had received a special $80,000 grant for an AIDS unit. _Indian_Express_ reported, "Vinit's blood samples have been returned untested by the laboratories, nurses have jeered at him, and doctors have asked them to stay away from them." The brothers went public with their story, even appearing on Doordarshan, the national television network, but to no avail. To this day, they continue to be shunned by the medical establishment in India. Last August, a pregnant woman from Arga was admitted to AIIMS but was refused treatment when it was found that she was HIV-positive. The head of gynecology, Dr. Kamal Bakshi, decided to go on leave as the patient was going into labor. The head of AIDS research, Dr. A.N. Malviya, claimed his department did not have the facilities to treat HIV-positive patients. In Bombay, about 30 kidney patients have been refused the dialysis they need to live because they test HIV-positive. The cruel irony of their cases is that they are now being turned away by the same hospitals where they were infected in the first place. Also in Bombay, a 3-month-old HIV-positive infant died at the Sir Jamshedji Jejahoy Hospital last August because no doctor or nurse would agree to tend her. FEAR AND DENIAL ~~~~~~~~~~~~~~~ "AIDS is still seen here as a disease of the poor, the illiterate, the prostitutes, and the deviants," explains Dr. Ishwar Satyanarayan Gilada of the International Health Organization, a group formed by hundreds of concerned Indian doctors. Based in Bombay, Gilada is regarded by many to be India's top AIDS expert. "I hate to say it, but we need an Indian Rock Hudson to die here before this attitude will change." And attitudes in India are slow to change. Centuries of Islamic and British rule have left their mark: To even talk about sex in public is taboo. This is why a sexually transmitted disease like AIDS is proving to be doubly traumatic for a society like India's. The trauma is far from over; it has only begun. The statistics are alarming. According to a World Health Organization (WHO) report, the government's own estimates of HIV infection in India have been revised this year with an almost hundredfold increase: from 4,515 cases at the beginning of the year to between 300,000 and 400,000. The actual number is believed to be close to 1 million and growing, according to WHO. "The conditions are here for and AIDS epidemic as bad as the one in Africa," says Dr. H. L. Sell, regional advisor on health and behavior at the WHO office in Delhi. "AIDS will play anarchy in India," warns Gilada. "It will be chaos everywhere. And even now, no one seems to care enough to do anything to control it." Unfortunately, most efforts by government and health authorities have been in the direction of testing, surveillance, and criminalization of the disease rather than prevention or cure. `WANTED FOR AIDS' posters carrying names and photographs of known HIV-positive individuals adorn the walls of the Lok Nayak Jaya Prakash Hospital in New Delhi and are even posted on some city streets. "AIDS in India is being treated like a crime, not an illness," says Dr. Bindu Desai of India Alert, a Chicago-based human rights organization. In the absence of a clearly formulated AIDS policy, bigots of all persuasions -- homophobes and misogynists, to name two -- are formulating public policy with no supervision. The best known example of this is Dr. A.S. Paintal, the ex-director general of the powerful Indian Council of Medical Research (ICMR) in New Delhi. He has been vocal and unapologetic in his views, singling out women as a "lousy lot...having AIDS being poured into them because they did not stop cohabiting with foreigners." Paintal has also claimed that there are no homosexuals in India. More than a decade after the emergence of AIDS, there is still no systematic screening of blood and blood products in private clinics, blood banks, and public hospitals in India. The Indian government has allocated significant resources towards AIDS research and prevention. In 1990 it set aside $15 million over the next three years for an AIDS control and prevention program. It has also funded 40 test centers in the five major cities of India: Delhi, Bombay, Calcutta, Madras, and Bangalore. But many of these test centers exist only on paper. As of this writing, only one of the eight sanctioned centers in Bombay was up and running. The AIDS ward in AIIMS consists of only two beds. "Even those two beds usually remain empty," charges Siddhartha Guatam, and AIDS activist in New Delhi, "because those who need them are not being admitted." It is not clear that the funds allocated for AIDS research are being used for that purpose. The _Times_Of_India_ reported that leading health authorities, including members of ICMR, concluded that AIDS prevention in India was best pursued through India's knowledge of "religious scriptires...and yoga practices." "For the Indian Council of Medical Research to say this," counters Gautam angrily, "is highly irresponsible." INDIAN PRIDE ~~~~~~~~~~~~ Indians pride themselves on being the oldest living civilization in the world. But in the 20th century, India seems to be struggling to find its place in the world. More than 40 years after winning its independence from Britain, its problems are far from solved. Secessionist struggles rage in Kashmir, Punjab, and Assam. Hindu-Muslim rivalry and religious riots are all too frequent. The problems of poverty, illiteracy, and hygiene remain acute. The arrival of a lethal and incurable disease such as AIDS clearly caught the country off guard. India's first encounter with AIDS took place five years ago, when a person infected by a blood transfusion during heart surgery in the United States, died of complications from AIDS in July 1986. "Since the beginning, when the first AIDS case showed up here," charges Gilada, "the government has taken a head-in-the-sand attitude toward this disease." The government's own HIV screening program did not begin until October, 1985. Until four years later, only 2,167 people had tested positive for antibodies to HIV. Medical experts insisted that the government's figures had no relation to reality. As late a 1988, Paintal, the government's chief medical researcher, was proposing a law to ban sex between Indians and foreigners. "The African nations weren't careful," he was quoted as saying at the time. "The foreigners gave it to them, and now they're giving it to us." A barrage of domestic and international criticism put a stop to his proposal. When Goa, the internationally known beach resort state, recorded its first AIDS case in 1989, the state government immediately enacted a law that permitted the testing of any Indian or foreigner suspected of being HIV-positive. Those who tested positive could be isolated in a hospital or prison. Dominic de Souza, a Goan employee of the World Wildlife Fund, was found to be HIV-positive and was kept in solitary confinement at the local police station for an entire month. Public protests by Gilada's organization secured not only the release of de Souza but also the repeal of the draconian law. What concerns Indian AIDS activists now is the proposed AIDS Prevention Bill that the government has been trying to pass since 1989. If passed, the bill would enable health authorities forcibly test, isolate, and detain any HIV-positive person or anyone even suspected of being HIV-positive; it would not require authorities to inform those tested about the nature of the test or its results. "This is a foolish, hysterical response to a major public health challenge," charges Gautam, a lawyer at the Delhi High Court. "It is a classic case of a medical problem being used to further a puritanical, moralistic, antipeople agenda." A similar bill is up before the Legislative Council in Maharashtra State, home to India's second largest city, Bombay. The bill calls for the arrest and segregation in detention camps of those found to be HIV positive. The secessionist National Socialist Council of Nagaland, a political group seeking human and civil rights in several northeastern provinces, has taken the ultimate step. After a three-day council meeting at its regional headquarters in Imphal, it announced on January 15, 1991, that if the group attains majority political power, all prostitutes and drug addicts suffering from AIDS in Manipur and other northeastern states of India would be executed. "It is shocking," admits Gautam. "It shows the kind of extreme fear that still prevails in India about AIDS." FIGHTING BACK ~~~~~~~~~~~~~ The impetus for a positive response to the AIDS crisis is coming not from the government or the medical establishment but rather from small nongovernmental organizations. Some of these are based in India and work on a volunteer basis on public-interest issues. Similar organizations of Indian expatriates in the West have also pitched in. Together, they are playing the crucial role of watchdog. Perhaps the most significant of these is the Delhi-based group AIDS Bhedbhav Virodhi Andolan (ABVA, the AIDS Antidiscrimination Movement), which was formed in late 1988 with the goal of providing support to HIV-positive individuals and lobbying for better medical care on their behalf. "For a small, all-volunteer group such as ours," says Gautam, one of seven core members of ABVA, "it's a major struggle. Still, we have been able to put a lot of pressure on the government concerning AIDS." On the eve of World AIDS Day (Dec. 1) of last year, ABVA organized a demonstration in front of the offices of the Medical Council of India to protest the mistreatment of HIV-positive and AIDS-affected individuals in Indian hospitals. Some 200 protesters carried placards with slogans such as `DO NOT MOURN PEOPLE WITH AIDS, JOIN THEM IN THE BATTLE'. ABVA constantly monitors the mistreatment of AIDS patients at local hospitals and writes letters of protest. It recently drew attention to the New Delhi Municipal Corporation Hospital's dismal record of infecting 17 out of 56 hemophiliac children with tainted blood. A group of concerned Indians in the United States has been watching developments in India with mounting concern. When Rachna Kamtekar, an India Alert member, visited India, she ran into Gautam and took a whole dossier of AIDS-related material with her back to Chicago. What she and other members saw convinced them that they had to get involved. They began circulating petitions and letters of protest to various government bodies and hospitals in India, urging better care for HIV-positive and AIDS patients. This summer, on a visit to Great Britain and the United States, Gautam met with Indians active in the local AIDS organizations in London and New York, he convinced them that something had to be done to put pressure on the Indian government. The result was a series of simultaneous protests at Indian embassies around the world: London, Toronto, New York, Chicago, and San Francisco. The date of the protests, Aug. 13, was chosen for its proximity to the anniversary of India's independence on Aug. 15, 1947. "The discrepancies between official and unofficial estimates [of HIV infection in India] galvanized us," says Harsha Ram, a member of the South Asian AIDS Action of New York. "At this rate, India could become the next major scene for AIDS in the world." "We need to learn that AIDS is a disease, not a crime," says India Alert's Desai, who helped organize the protest outside the Indian consulate in Chicago. "The outlook on AIDS in India is extremely grim. We are sitting on top of a volcano." COMING OUT ~~~~~~~~~~ The recent protests have also drawn openly gay and lesbian South Asians. (South Asian is the modern term for the Indian subcontinent. It consists of countries such as India, Pakistan, Bangladesh, Nepal, Bhutan, and Sri Lanka. South Asia is often confused with, but very distinct from, Southeast Asia, which encompasses countries such as Malaysia, Indonesia, the Philippines, Cambodia, Laos, and Vietnam). Organized gay and lesbian groups of South Asians were unknown as recently as 1985. In a society that is afraid to discuss heterosexuality, homosexuality may as well not exist. The old British law making sodomy a crime punishable by a life sentence still remains part of the Indian penal code. India's first gay and lesbian group made its debut in Bombay in 1990 with a magazine called _Bombay_Dost_, while gay and lesbian support groups formed in New Delhi, Calcutta, and Madras. India's gay and lesbian revolution was not restricted to its major cities. A publication called _Freedom_ began publishing from the small town of Gulbarga in Karnataka State around the same time. Some changes have been evident in the Indian government's approach to AIDS in recent months. "The rhetoric has changed slightly," says Gautam, pointing to the government's new media campaign that carries messages such as "Kissing and hugging do not spread AIDS." AIDS-prevention posters and advertisements are now beginning to suggest the use of condoms as protection against the virus. "For the Indian government, this is a radical shift," Gautam notes. WHO's Sell is more upbeat. His organization has just applied for a $55-million World Bank loan for AIDS prevention in India. He takes a kinder view of the human rights abuses that have occurred in India. "Every government in the world has gone through the phases of denial and horror about AIDS," he says. "The problem is not unique to India. Now the climate [in India] is very good for intervention because everyone is taking AIDS very seriously." If the World Bank loan comes through, Gautam says, "We are pushing for assurances from the government that all this money won't go towards just saleries, that some of it will actually be used for AIDS prevention, screening of blood products, etc." India's first group for people with AIDS is being formed by de Souza. Despite the small gains, India is not yet safe for those who are HIV-positive. "Sending HIV-positive individuals to a government hospital may be the worst thing for them," Gautam says. What disappointed him most has been the medical community's response to AIDS. "Doctors have been at the forefront of spreading misinformation about AIDS in India," he charges. "They have blamed prostitutes, blood donors, and all other marginalized groups in society for AIDS without any statistical data to back up their claims." Now there is additional cause for concern, not from within India but from abroad. ABVA has learned that WHO is looking for a site to test an AIDS vaccine. The vaccine, which will most probably be developed in European labs, will most likely be tested on humans in Africa or India. A WHO source who declined to be named says that a team has already visited India to search for possible sites. ABVA is strongly opposed to the trials. "Indians are being targeted as guinea pigs," says Gautam, noting that the target population will almost certainly be picked from the lower classes of Indian society and will be given little or no say in the testing process. At the August demonstration in San Francisco, there was a sense or urgency. "I feel very strongly about what is happening," said Nina Kabir, a Bangladeshi. "If we don't act now, it'll be too late." "It is already too late," says Gautam. "I feel quite pessimistic." But other activists remain optimistic. They believe they can change the world by trying. They may not be able to check the spread of the virus, but they may yet be successful in awakening our sense of compassion and fairness. "We can treat AIDS," says Desai, "with kindness, with dignity, with love." -- Greg (Gregory Loren) Pratt Rochester Institute of Technology Snail: CPU 1519 25 Andrews Memorial Drive Rochester, NY 14623-5689 USA glp5941@ultb.isc.rit.edu | GLP5941@ritvax.isc.rit.edu | GLP5941@RITVAX.BITNET