The next battleground: AIDS in India

Road sign in Spiti Valley, Himachel Pradesh, India
Road sign in Spiti Valley, Himachel Pradesh, India

Every day across the globe, 5.000 people are infected by the virus that causes AIDS. More than 14 million people are believed to have been infected so far, mostly in Africa. A new battlefield is now emerging in the war against AIDS. In 1993, an estimated 2 million people in India had HIV. Experts predict that the figure could exceed 30 million people by the year 2000.

Producer: Eric Beauchemin

Original broadcast: October 10, 1993

Gold medal, Asia-Pacific Broadcasting Union, 1994
Silver medal, New York Radio Festivals, 1994

Transcript

Every day across the globe, 5.000 people are infected by the virus that causes AIDS. More than 14 million people are believed to have been infected so far, mostly in Africa. A new battlefield is now emerging in the war against AIDS: India, where 30 to 50 million people could be infected by the year 2000.

Radio Netherlands, the Dutch International Service, presents a Research File special: “The Next Battleground – AIDS in India”. The program is produced and presented by Eric Beauchemin.

The most conservative estimate in India is 2 million HIV positive. And in India, this epidemic is going to grow in the next 7 years to a figure of 30 to 50 million HIV positives, which is 3 to 5 times the number of the world’s HIV positives today. By next year, India will top in HIV positive cases. It will be the one single country having the highest number of HIV positives.

The full impact of the AIDS epidemic in India will only become clear in the next few years. But already Dr. Ishwar Gilada and his Indian health organization are predicting that the economic and social costs will be staggering. The Indian government is slowly waking up to the fact that 1 Indian in 20 may be seropositive by the turn of the century, in six years from now. It’s beginning to take steps to stop the spread of the disease, but for many, it’s too late. Tony, who’s 28, works as an HIV/AIDS counselor for the Indian Health Organization, the IHO, at the Salvation Army in Bombay. He’s known he’s had the virus for 1.5 years but isn’t sure how he got it.

I had an accident, and I received 2 bottles of blood. I used to go out also to the red light areas. So I don’t know exactly how did I get it. EB: What has happened as a result of you now that you have HIV? In the beginning, I was very much depressed, thoughts of suicide and all these things. But slowly, gradually, after coming here to the Salvation Army, the IHO, I’ve got a lot of courage. They told me exactly what is wrong with me, that I only have the virus in me. I have to take certain precaution, look after my health and all. And otherwise I’m a normal person. EB: Do your friends and relatives know that you have HIV? Not everybody. I just told my family at home and one or two close friends of mine. Their reaction, to be very frank with you… Of course, they did get a shock, but there was no difference. ?? Normally I was staying with them. I was very lucky in that way. EB: Is that what happens to most people or do most people have problems with their family? I should know better because I conduct the positive people meeting over here at the Salvation Army. I know that there are different cases of people who have been frank enough and told them what is their problem. They shun them. This is all due to ignorance. EB: What are you doing to make people more aware of AIDS? We have been try to give them some more information, the family people, and maybe the public. They should know exactly what is different between HIV/AIDS and all that. You see, I would just like to tell all the other persons who are tested HIV positive not to worry. OK, inside they will feel depressed but you have to take life as it comes.

Not far from this outpatient clinic for people with HIV or AIDS is Bombay’s red light district. According to some estimates, in this megalopolis of 15 million people, over half a million men come here every day. It’s virtually impossible to describe Bombay’s red light district. Girls, who can’t be over 10 and who usually come from Nepal or Burma, dressed in colorful saris with loads of make-up, sit or stand over there with ravishing women in their 20s and to women ravished by the trade, who look like grandmothers but who are probably no older than 40. A visit here can go for less than a dollar. Over 50% of the prostitutes are HIV positive. Pritti Pai runs Prerana, an organization which helps the women and their children.

We’ve tried in the past when brothel keepers come and asked us: you know, we have this HIV woman, why do we do with her? We’ve educated brother keepers and saying that no, you don’t throw her out. It’s not important really to throw her out because she’s not in danger. If you can, as a group, help her and see to it that she doesn’t continue into the profession, that’s great but the fact is that 90% of them just can’t continue in the profession. We have women who were HIV positive and they don’t believe it at all. They just don’t believe that they are HIV positive. They feel that it’s a myth. HIV is a myth.

It’s a myth that has already killed over 100.000 people in India, a myth that has left over 200.000 people with full-blown AIDS, a myth which is spreading the way it does across the world. In India lie in Africa and other developing countries, heterosexual sex is the main form of transmission. But according to Ashok Kavi, the editor of Bombay Dosht, a monthly for gays, the virus is also being spread through male-male sex.

I’m not going to tell you the figures, but it’s bad. That’s all I can tell you. I think that gay infections are going to rise very rapidly in the next five years. If you look at the transmission flow pattern in America, or pattern 1, first it was detected in the gay community because of its mobility, its rest and recreational policies, that sort of thing. The vector in between was the bisexuals, through which it perculated into the heterosexual community. Now the exact opposite is happening here. Here, if the transmission was heterosexual and accepted as so, again it is the bisexuals who are bringing it into the gay community. So there will be a delayed reaction but it doesn’t mean that we are not going to be affected by it. Unprotected homosexual transmission rates will increase very rapidly in the next 5 years. They will touch about 50%.

The virus has already permeated so much of Indian society that even if a comprehensive plan were to be implemented today, millions would die. It’s this horrifying specter which got the Indian government to move. A year and a half ago it established the Indian National AIDS Control Organization. The main priority, says the program’s director, Dr. P.R. DasGupta, is to control the spread of sexually transmitted diseases or STDs.

We realize that in India the extent of STD is very high, and if a person is suffering from STD, the chances of that person acquiring HIV is 30 to 40 times more than a person who is not suffering from STD. Therefore, in our program, we lay a very heavy emphasis on control of sexually transmitted diseases as well because STDS are curable. They can be cured. HIV cannot be. Therefore, in our program, we have placed a very, very strong emphasis on control of STDs. And that way we realize that we only can do by involving the general practitioners because unfortunately in our country the tradition has been to do it through specialized STD clinics, while these specialized STD clinics as a concept is not bad. The real problem is nobody who is a first timer would like himself to be seen outside the STD clinic because that is the surest sign to get stigmatized. What will the neighbors think of him?

In a traditionally conservative society like India, sex has never been the easiest of subjects to broach. Sexual taboos remain strong, but Dr. Khadakovich of the World Health Organization’s global program on AIDS in India, says attitudes towards sex are beginning to change, at least at the government level.

The central government, the ministry of health, most of the state governments have been sufficiently alerted and understand that this is not an excuse and this is not a barrier for the virus. We’re doing a lot of advocacy work, showing the examples of Bombay, Calcutta, STD surveys in different places, patterns of sex, patterns of injecting drug users to motivate people who still do not believe that the problem will be here. The problem is here and will extend.

And that message, says Dr. Gilada of the Indian Health Organization, a non-governmental group, is slowly filtering down to the people.

Sexual attitudes are changing, but I don’t know whether there will really be sexual devolution. The sexual attitudes will change where people will try to minimize partners, but I can’t say that they will only stick to one. So, at this stage, we can’t only stick to one kind of messages that practice monogamy or practice celibacy. We have to give dual messages: that it is better to practice monogamy. But if you can’t, then use condoms. The sale of condom has gone up. The distribution of free condom has also gone up. It would have been also very well, but in the family planning program of India, they never promoted condom in a very active way and a big way because they onus of family planning or avoiding pregnancy was always on woman. And she was asked either to use IUD or pill or get abortion done. The man was not interested to use a device.

In the heart of Bombay’s red light district, Pretti Pai runs a center for the children of prostitutes, some of whom are HIV positive or have AIDS. She says that while condom use is increasing, many men still have to be convinced of the need to protect themselves and their sexual partner.

The whole HIV/AIDS prevention was so wrongly addressed to the prostitutes because we’ve worked in the field and we know that…not only Indian women tell me but the whole of the world, how many women would really have the negotiating capacity with their own husbands? That, well, I don’t feel like having sex tonight or I think you should use a condom because I do not want to have children. So it’s not that we are telling the women: don’t be aware. We tell them that you can at least do it. We never tell them anything. We actually have a dialogue as to what is feasible and what is not feasible. Most of the time the discussion is around if a customer says yes to using a condom, then what is the right way of using a condom? What is the right way of disposing of condom? How after ejaculation see to it that the penis is out of the vagina and that the condom is removed because even then the condom is of no use if you say, no, no after the ejaculation and the condom is still there. These are the things we discuss with them. But at the same time, we feel that if the men are more aware, then automatically the women are taken care of. If the society is really concerned about the health and welfare of these women, then they should actually be getting the men aware about how using condoms is not only safe for them but also safe for others. It’s no point just getting at these women and telling them: use a condom, use a condom, use a condom because the man will say: OK, if you’re acting tough, I will go to someone else. If she knows the client and if the client says, well I’m your regular customer and today I feel like going without a condom, she takes that client. Even if a woman has 10 customers per day and out of those 10 customers even 1 customer decides to have unsafe sex, this woman continues to be in danger. This woman is never safe. The whole issue is that all 100% of men should be made aware and only then would this woman be safe.

So what is the National AIDS Control Organization doing to try to increase awareness? Dr. DasGupta again.

We’re of course trying through the publicity but the real problem is that there are many people in our country who do not have access to the print media or even the electronics media. Therefore, in our kind of a context, such kind of messages of communications would have to depend very largely also on other mediums like folk entertainment channels, interpersonal communication, etc. So we are trying to do it on all fronts. We are trying to find out what are the popular channels through which one can reach the people.

To reach the 4 to 500 million people in India who are functionally illiterate, Dr Gilada says there’s no need to look for innovative solutions. An excellent method of communication with the poor is already in place.

If you see electioneering of this country, it reaches everybody. Why can’t we reach AIDS through that kind of pattern? We just perculate (?) AIDS through election mechanism. There is not a single party in this country which has made AIDS as one of the manifesto. So, had they made AIDS as a manifesto, it would now reach everybody. But they do not consider AIDS as their problem. They consider AIDS as somebody else’s problem. Though as an AIDS physician, as an AIDS clinician, I’m seeing patients from all walks of life, whether they’re politicians, whether they’re film industry people, whether they’re businessmen or industrialists or lower class, middle class, upper class people. But I cannot come out openly with who I am treating with. And therefore people from that category, they do not know that they already have HIV cases in their families or in their group. They do not consider that it is their problem because everybody thinks: it cannot happen to me. It is always a kind of escapism or denial or blaming other. Denial would be that somebody is going to the prostitutes every day. He’s not got AIDS, so I’m just going once in a year or once in a blue moon. How can I get? Or I don’t go there. I bring in posh girls or from good society, college girls. Here is a behavioral problem. Even there is a college girl or it’s a good society girl or a common prostitute, it’s a behavioral problem. That, people don’t understand.

While it may be difficult to convince adults of the need to have safe sex all the time, doctors are hoping that they will have more success with teenagers and college students. Dr. P.N. Segal, the coordinator of the AIDS program of the Voluntary Health Association of India, believes AIDS education can be introduced in schools and colleges through the back door to avoid opposition from conservative parents.

It may not be said as sex education. It can be a normal physiology or human body, its functions. After all, each person has a right to know about the functioning of one’s own body. And in that process, they can be told what are the various diseases, and one of the diseases which can be covered is sexually transmitted diseases and how they can be prevented. Because, in that way, people won’t say that we are only talking of sex only. Ultimately, we have to accept the realities of life. Sex is one of the activities of life, and the earlier we accept it, the better it would be.

Even if Indian society does face up to AIDS and everyone starts practicing safe sex, a lot will still need to be done. Much of the blood supply is contaminated with HIV, and Indian simply doesn’t have the financial resources to screen all blood donations. The blood supply is also under threat, says Dr. DasGupta because India relies heavily on professional donors, and they are often carriers of diseases and viruses, including HIV.

What we intend to do then is apart from providing HIV testing facilities, we also place a very strong emphasis on augmentation of voluntary donation of blood. We think that in the ultimate analysis would go a long way in improving the quality of blood.

Dr. Gilada, who has been at the forefront of the battle against the AIDS epidemic in India is tired of hearing about all the plans being drawn up. What is needed, he said, are not plans but action.

Till today, 50 to 60% of the blood supply in this country is not yet safe, while the worst of the worst countries in Africa started HIV screening in ’85, ’86, ’87. And from ’87 onwards there’s universal screening everywhere. And you must have been reading now the legal cases in Germany. The infections occurred between July ’85 to October ’85. And they’re suing the entire government in Germany. Those people are being paid compensation. Here, the infections are happening today.

Dr. Gilada is not the only one to be angry at the government’s dithering. But Dr. Segal says the accusing finger shouldn’t be pointed at the central government, which is fully aware of the seriousness of the upcoming AIDS crisis in India. The problem lies at the state, and particularly at the community level. His organization has been carrying out AIDS prevention work in the northeastern state of Manipur, where drug addiction is endemic, due to cheap heroin being smuggled in from neighboring Burma.

We have educated the easy availability of syringes and needles to the drug addicts so that further transmission can be slowed down. But this was not done. Government put restrictions about the sale of needles and syringes with the doctor’s prescription. With the result that injecting drug users had improvised their own injecting equipments in the form of plastic ink droppers, which is used as syringe and had their own hypodermic needle and they continued sharing the injecting equipments. With the result that the infection kept on spreading in the community.

The sharing of syringes, contaminated blood and still a lot of unsafe sex…all the ingredients needed to produce an unprecedented AIDS epidemic. What makes it all the more frightening is that despite the government’s awareness campaigns, many people I spoke to – even well-educated people – did not know how to protect themselves and others. No wonder that the number of HIV positive people – currently 2 million – is doubling every year. No wonder either that Dr. Gilada believes that between 30 and 50 million people will be infected by the year 2000. And, as if all this weren’t bad enough, there’s worse to come. AIDS specialists are worried than even more people will die from HIV-related tuberculosis than AIDS. Dr Bhagwan of the Virology Department of the Victoria Hospital in the southern city of Bangalore has been doing research on HIV-related tuberculosis.

Many of the tuberculosis patients are suffering with HIV. The prevalence of HIV in tuberculosis is high. I don’t have any clear evidence of which is first, but logically thinking they have developed HIV infection first and after that they have gone into the tuberculosis.

People with HIV or AIDS are more susceptible to getting tuberculosis because their immune system is weak. Tuberculosis, if not properly treated, can kill within a few years. So people with HIV or AIDS generally die of that and not AIDS. This is the most frequent scenario in Africa, where 60% of the people with AIDS die of tuberculosis, a disease common in Africa and India. If the African scenario becomes prevalent in India, and Dr. Bhagwan believes it might, it would threaten the health of the general public in two ways: firstly, while the virus which causes AIDS is only spread by exchanging bodily fluids, like semen or blood, tuberculosis requires no physical contact. The organism that causes TB travels through the air, and India has all the conditions needed for it to spread like wildfire. People are very mobile, traveling from one part of the country to another. Trains and buses are often overflowing and hygienic conditions tend to be bad. People often also spit and clear their noses in the streets, thereby releasing the tubercle bacilli which cause the disease. Dr. Bhagwan again.

The tubercle bacilli multiplies rapidly in these patients. And so there’ll become open cases very quickly and spread into the general population is also more. Open cases of TB in general they are a threat to the public unless they are isolated and treated. They’re a threat to the public. They can spread to their family, their surroundings, the environment itself.

The second threat these people pose to the general public is that they often develop strains of tuberculosis which are drug resistant, so the patients cannot be cured. So, the greater the number of people with HIV or AIDS, the greater the likelihood of drug-resistant strains spreading to the general population. Doctors predict that within the next decade, India will experience not only an exponential growth of HIV and AIDS cases but a similar increase in cases of tuberculosis.  In the worst case scenario, some AIDS specialists believe HIV-related tuberculosis could be even more devastating that AIDS itself, which is why Dr. Bhagwan says that treatment of TB is just as crucial as treating HIV and AIDS.

More than controlling HIV, I think they have to control tuberculosis also along with the HIV infection because once the tuberculosis develops in them – and the relapse rate is very high, seems to be very high in these patients – so, once they are not treated properly, they come to the hospital again and again. These people have to be treated completely and they should be certified as negative and they should be followed up for break down again.

It’s only when you realize that all the conditions are present in India for the epidemic to spread along the same lines as it did in Africa that you begin to fathom the full potential of AIDS in India. The costs of drugs, care and treatment are expected to skyrocket in the coming years. The Indian government is receiving assistance from the World Health Organization and non-governmental groups to fight the spread of the virus. It’s also been granted a loan by the World Bank. It’s a drop in the ocean, but better than nothing. But as officials scramble to stop the virus from spreading further, I asked Dr. DasGupta if NACO, the National AIDS Control Organization, had any plans to provide special facilities for those already infected who will go on to develop full-blown AIDS.

You must realize that you cannot create a special class of patients. In India, as I told you, the existing caseload and existing morbidity is fairly high, you cannot afford to treat or create certain special support facilities for AIDS patients without creating a totally hostile reaction in the society. And that, in turn, will play its own role in stigmatizing the AIDS patients as well. I don’t think we can afford to do that unless we are in a position to provide special support facilities for all those who are suffering or who are disabled to lead any productive life. Until that is done, I think we can’t even dream of that.

According to official statistics released by NACO, the number of people infected with the AIDS virus is around 15.000. About 500 have developed full blown AIDS. Those are the official figures. They belie what is happening in reality. The AIDS clock now stands at over 2 million infected, according to Dr. Gilada, and it has just begun to tick. Dr. DasGupta of NACO again.

The government did respond slowly to this disease but that is because in any developing country it is usually the problem when the cause to consequences chain is long. This very, very long acting disease, it needed time for the people to recognize that there could be such a long chain. That might be one of the factors and of course the resource crunch was another factor. There was always the question of whether one devoted more funds to AIDS, probably it would mean cutting down the malaria control program or some other program which were claiming more lives than AIDS were supposed to be claiming. We find right now that it’s not the constraint of funds which is inhibiting the program. It is rather our own creative ability to tackle the problem which is perhaps standing in the way.

Dr. Gilada of the non-governmental Indian Health Organization has a very different assessment of India’s response to AIDS.

A lot is being done but it is not commensurate with the problem which we are facing, and not certainly with the speed with which HIV is increasing. HIV has been detected in this country in 1986. The major action started in 1992. So I think we lost a precious 6 years of time. But it is better late than never.

Indeed, because the epidemic hit India much later than other regions like Africa and Latin America, Dr. Khadakovich of the WHO’s global program on AIDS believes India is in a favorable position to avoid other countries’ mistakes.

They know what to know, while those people in Africa and eastern Europe didn’t know…there was no knowledge from anything: how to behave, how to prevent discrimination, how to prevent even identifying people infected for HIV. Everyone was rushing to identify and they didn’t know ?? India has an advantage of this knowledge.

Whether India uses that knowledge or not remains open to doubt. AIDS is on few people’s lips in India. It hasn’t sunk into the national consciousness as it has in the developed world. Pretti Pai, the director of Perana, which works with Bombay’s prostitutes and deals with many women who carry the virus says we really shouldn’t be surprised.

In developing countries, people die. People die every day. So they think, well we die of HIV/AIDS. Of course, we have seen a handful of them who’ve thought that’s the end of life. I remember a woman – I think it was in 1989, 1990, I’m not sure. When this lady was diagnosed HIV positive and we were trying to tell her this, you know, for her it was the end of the world. And then she said, OK, I will go back to my village and I’ll somehow survive. She repeatedly tried to tell us that if there was some medicine that will cure me, will you call me back? Because in my village, I’m sure that medicine would never come first. If it comes first, it will come to Bombay. So, will you call me? Will you treat me? And oh God. Even now I get goose flesh when I think of it. It was so sad and exactly about a week later or 10 days later, the clinic told us: we’re sorry. We had messed up with the report. She’s not HIV positive. And when we told her this…I mean, I can still see that relief. And she said, God, I cannot tell you. I went to so many temples and so many mosques and just praying that this wasn’t true, and see, the god has heard me. And it’s not true at all. There are women who aren’t, but they are few. Like there was this woman who was HIV positive and we were trying to talk to her and she said I’ll tell you something: you all look so disturbed but this is not the time to tell me because I have just come to give you this message about my son. I’m going out with one of my clients for 3 days and I’m in a nice mood, so probably we should discuss these topics after I come back. And the whole office, they were disturbed. They were looking at me as to how is Pritti going to tell this beautiful lady that she is… And she was really beautiful. Oh, what a lovely face, that she is HIV positive. And everybody trying to look at me as to how I’m going to really start this whole topic and this lady casually says: OK bye bye. And she’s out of the room. These have been different kinds of reactions. I’m not a representative of the lay public in India, but you ask them and they’ll say: oh, yeah, I know it’s sad but what can we do about it? We are anyhow dying.

This type of fatalism combined with widespread ignorance and indifference doesn’t augur well for the fight against AIDS in India. The World Health Organization, which monitors the development of AIDS across the globe, believes that AIDS will develop India much like in Africa through contaminated blood and heterosexual sex. Within the next decade, India will probably become the country with the highest number of HIV cases, but the percentage of people affected will be lower than in many African countries. At the fledgling National AIDS Control Organization, doctors remain optimistic that they will be able to slow the spread of the disease. But Dr. Gilata, the director of the IHO, the Indian Health Organization, who’s spent the past six years of his life trying to educate people about AIDS, is beginning to lose faith.

I used to be optimistic till last year. But ever since we have seen the third phase of the epidemic in a very serious way, where we are seeing housewives with HIV positivity, and the number is not a small number. It’s 1 percent in Bombay, and we are seeing the newborns with HIV, well we really call it the third phase of the epidemic. It has moved from prostitutes to their clients to their housewives and their children. It is a devastating disease and in Bombay, despite all this awareness, education, training programs, despite IHO being active for the last 8 years, so several organizations working, still we have a lot of problems, still we are seeing a lot of new infections. Lot means lot of new infections, especially in young people. I think 70% of my patients are between the age of about 20 to 35 and everybody thinks how many cases are there on record? 400 cases, 450 cases? Recorded cases may be 450 but already 100.000 people have died of AIDS. There are already 2 million people with HIV infection, already. And at present it is doubling every year. So, if you delay any action by one year, you’ve doubled the problem knowingly. It is a really devastating disease and people have to work on war footing.

“The next battleground: AIDS in India” was produced and presented by Eric Beauchemin. Technical production: Floris van Hoorn. This has been a Radio Netherlands’ presentation.