The Next Wave:
New Strategies and Responses to HIV/AIDS in India, China, Russia

Sujatha Rao
National AIDS Control Organization, India (NACO)

Asia Society, New York
May 30, 2006

Thank you, ambassador. Ladies and Gentlemen,

I am extremely honored to be here this morning, to be able to share with you some of my experience with what work we are doing on HIV/AIDS in India, which is a concern globally, largely because after South Africa, we have the largest number of people infected with HIV/AIDS. In terms of proportion to population, 99-percent of India's population is still uninfected. We have 0.9-percent of the people infected with this terrible infection.

India's response has been very comprehensive and one needs to study in from a historical perspective, in terms of how the first infection was detected in 1986 and how India has been responding to the infection. Phase I was largely from 1986 to 1999. It took us almost a decade to really understand what HIV was about. We went through the typical phase of denial. We did not understand its relevance, we did not understand its importance, and we did not understand its epidemiology.

During the first phase, '93 to '99, we spend much of our time and resourced trying to look at access to safe blood. At that time, data showed that 9-percent of the infection transmission was through infected blood. We had to set our house in order and show that we provided safe blood; so much of our attention went into modernizing blood banks and trying to see that the access to safe and uncontaminated blood was ensured.

We brought the infection down to about 1.5-percent; that's the latest data, which is a pretty good record. We also had spent a lot of time on trying to raise awareness, and that brought us to a lot
of challenges. India is a very traditional society, particularly when it comes to talking about sex. It's the land of Kama Sutra, so it's not that we don't know about sex. So it's foolish to say that
we don't know all about sex.

But the point is talking about it; these are just simply dos and don'ts that are conventionally put on board on how children behave in the families, how the families are structured around these issues, what you say and what you don't say in schools. Even now, when we go to schools and some of the places and tell them, "You must tell about sex and sexual education." The parents react by
saying, "Don't tell our children all about those dirty things."

So this is the kind of response that we still get, but it's come a long way, certainly it has come a long way. Those were the days when we were battling with trying to understand how to raise awareness on the infection and the way it was spreading.

In 1999, we went into phase II. In the first phase, we had experimented and carried out, very successfully, some pilot projects and the lessons learned were that infection was really concentrated among the high-risk groups, namely commercial sex workers.

We found a very concerted policy plan, and this experiment was carried out in Calcutta where a very high, 6,000 to 8,000 sex workers lived in the brothel, one of the largest brothels after
Bombay. There the infection rates really came down because there was universal acceptance of use of condoms. STD rates came down and infection rates were contained.

As contrasted to Bombay, which again had a huge brothel in Bombay itself, I think of over 80,000 sex workers. There almost 55-percent of the commercial sex workers were infected. Anecdotally, now a large number of them have died. They couldn't get access to this information and condom use was very low. Each sex worker tended to have anywhere between 5 and 10 partners a day, so that's how the infection was spreading in the country.

We said, "This needs to be looked at and this is an area where we really need to focus our energies."

Phase II really got into a really comprehensive strategy to work closely with these commercial sex workers, injectable drug users, particularly in the Northeastern part of the country Manipur,
bordering the Myanmar and Burma, where a lot of drugs get imported into the country. You'd find in the tiny state of Manipur, I'm told, that at least 40,000 youngsters in the age group of 18 to 24
infected with HIV, largely because of injectable drug use. So it's a huge social program, therefore IDU also became one of our important areas of concern.

The third, which has recently come into our vocabulary, is men having sex with men. I must confess that this was not really seen as such a big problem until a mapping exercise was taken up of all the commercial groups in 2002/2003, and we found that men having sex with men is a very huge number of people in India. It is so intertwined with the cultural practices that it's a very different approach all together, so we really need to be addressing strategies on how to access them with information.

So we focused a lot in this phase II on these three high-risk groups, particularly the commercial sex workers. The coverage is pretty good; almost 60-percent of them we've been able to access.
Condom use is almost 50-percent among them.

Infection rates of STDs have certainly come down. Now that we have a mapping exercise, it's going to be possible to really to do a saturation policy. A saturation policy is what we're going to be launching.

Right now, we have over 1,300 NGOs working with these groups, largely commercial sex workers in IDU. As I said, MSM is gaining importance. We're trying to recognize this lifestyle, and we're trying to develop capacity among the NGOs on how to address them and how to access information. When we say information, it's not just merely going and telling them about the condom, but telling them about the infection, getting them access to services, getting them access to services for treatment and condoms.

Also, in terms of getting access to getting their status tested through VCTC, that's Integrated Counseling and Testing Centers. But I must say that awareness among all these high-risk groups,
according to our surveys, is quite impressive at over 72-percent, but behavior change is slow in coming. That's something that we need to be working on.

As of today, the phase II has come to a closure where the officials are trying to take stock of what we've achieved, what has been our response, what do we do now, where do we stand? In October, we're launching a phase III part of the project. Our stock-taking has shown that we've come a long way. The epidemic has matured and so has our response.

Today there are 5.2 million people infected according to the latest survey, versus 5.1 million last year. If you look at the trend, we have about 750 sentinel sites. I'm told that is the largest in the
world. At these sentinel sites we collect about 400 samples from each that are anonymous and unlinked. These are then tested at a national reference laboratory, so the quality is absolutely,
undoubtedly good. These sentinel sites have shown two or three disturbing trends.

While the good news is that it hasn't really exponentially grown as expected, I have a caveat that I'll come to later on that, it has also shown a disturbing trend of feminization of the epidemic. We
have almost 38-percent of women infected, which is much, much more than what it was a few years ago. It has gone into the rural areas. About 57-percent of the infection is in the rural areas.

Previously, we had thought that HIV was a fairly urban phenomenon, but now it is getting into the rural areas, the rural households. This means it is really the rich populations, the migrant workers
and the truck drivers, who tend to come to chronic opportunities in the cities and take back the infection to the wives.

If the epidemic is a little contained, it's possible that it's because the wives are not, in turn, having several sexual relationships; it's stopping at the home. But nevertheless, it's creating a huge social problem in the highly infected areas of the country of sub-epidemics within this epidemic.

In the highly infected areas, I hear very disturbing stories about women and how the discrimination and stigma hurts them much, much more. They are far more vulnerable than an HIV-infected man.
Families would sell their assets, their land, their goats or sheep, whatever they had to provide medical treatment, for example, to the man. But when it is his wife who is infected, or she is widowed, she is often thrown out of the house or left without any security. I hear, this is in pockets, stories about she has been forced to prostitution just for her children and herself to subsist.

This has now provoked us to come up with a very strong law, which is going to give extensive rights to children infected with HIV and the women, and this draft law is almost ready. We are going to be placing it on the table of the House in the monthly session of the Parliament. I think that is going to be our major focus now to fight stigma and discrimination and protect women and children. This is the social out-fall of this epidemic, which is not very easily understood or spoken of, but the feminization of the infection that is causing me great concern and is something that we're certainly going to be focusing on. The second is the young, 15- to 29-year- olds, almost 35-percent of them belong to this age group.

In several pockets, sexual permissiveness has come again. Taboos and inhibitions, as a whole, young people are getting more vulnerable to this infection. We need to reach out to them quickly. We have a strong school education program. We have a strong program that reaches out to them in the universities, but it is the workplace and it's those who are not attending a formal institution structure; that's where our challenge lies. Among the young, the 15- to 29-year- olds, HIV/AIDS is probably one of the highest causes of death. It's the third of the fourth cause of death among this band of 15- to 29- year-olds after accidents and other causes.

So what has been our strategy? India, if you really look globally, India's strategy has really been one of the most comprehensive one. I believe strongly that the strategy is sound; it is based on
evidence, epidemiology, and the way the epidemic is unfolding. It is based on the reality that we see in India. The strategy really consists of an uncompromising adherence to the policy of prevention. We believe that preventing this disease is going to be the most effective component, but certainly it cannot be that you only do prevention. We are looking at the continuum of care, the care and support where you provide treatment for opportunistic infections. We provide treatment and access to other services and, finally, treatment itself that is affordable. In the AIDS case, we provide ART.

It is in this context that I would just like to run you through. The prevention strategy is not only working among the high-risk groups, it is raising of general awareness of people on HIV infection,
ensuring blood safety and ensuring access to STD services. The prevention policy itself is whole package of basic healthcare and basic services related to HIV. Also, those who are infected by TB get access to treatment. As you know, we find that 50 to 60-percent of our HIV-infected persons are succumbing to TB. We did a study and we found that among them, they came to us so late that even after being treated on DOTS, 58-percent of them died. So this whole co-
infection between TB and HIV is something that's getting a lot of attention. We have about 11,000 microscoping centers where DOTS is provided, and that's where we are now trying to train the lab technicians to also do HIV rapid test and really and fully expand access to rapid testing of the status of people who are infected with HIV.

The final component, which is very critical in the prevention strategy, was started two or three years ago and is gaining rapid momentum and that is what we call ICTC, Integrated Counseling and Testing Centers. This is where we have a trained counselor and a trained lab technician. It is in these centers where we have done a lot of advocacy. We are doing a lot of awareness and asking people to voluntarily come forward and get themselves tested.

I'm not so sure about whether testing should be made mandatory or not. The policy currently in India is that it has to be voluntarily. The Civil Society is not willing to accept the concept of mandatory testing. There are two states, one of them from where I come, and the epidemic is the highest in my state, where the Chief Minister has been making statements that he would like mandatory testing before marriage.

He is responding to a social crisis in that state where young women have gotten married to HIV-positive men and the men have died. They have become widows and they don't know where to go. It's made a lot of people say, "This man has cheated on us." There are instances where the man knew that he was HIV-positive and yet go married.

In response to this kind of crisis, there is the stock of mandatory testing, but I'm so sure whether that would be a very efficacious way of going about this problem, largely for two reasons. One is
that just before you are getting married you may make it mandatory. First of all, because of the Hindu marriages, we don't have the concept of registration. How many of them would really come in for registration is one issue.

The second is that the infected person could be going through a window period and may not get detected. So what is the whole point of making this a mandated requirement? The third is even if it were, the Civil Society is very concerned that even if you did have mandatory testing and it is found that one of them is positive, the blame is likely to come on the woman and the marriage or the engagement would be broken off saying, "She has HIV." So the confidentiality of it all gets exposed and the woman is then condemned forever as HIV positive. She can go to counseling or not, but nobody will believe her.

So these are the kinds of apprehensions that go into this who concept of making it mandatory. Therefore, we are vigorously following this policy of expanding access very quickly, as fast as
we can, to ensure that people walk in and get themselves tested. The response has been fantastic in the six states that we have set out this policy in the last two years, more particularly in the last few months; we've set up over 2,700 centers in these six states. We ran a campaign for the ICTC in the last 15 months and we found a 40- percent increase in people coming forward to take the test. That is strongly indicative that with a strong demand generating policy in place through the ICTC campaigns and by putting the supply position in place, there will be people who want to come forward and get themselves tested. It is very useful because we see the HIV-positivity rate in these ICTCs to be 7, 10 or 12-percent. So this is helping us to identify, counsel and also reach out to the HIV- infected in time.

The care and support is the second segment of the whole continuum of care. Here we have largely NGOs who run hospices, if I may put it that way. Largely because men and women, particularly the poor are infected. Either they're too poor to spend money and get themselves treated, or they are being thrown out of the house, whatever the case may be. But it is these people that are provided with treatment in the hospices by the NGOs. They give them food, given them love,
give them care and it's very, very popular. Right now, we have 85 of them. In this case, we are trying to link them up to the [inaudible] centers with medical treatment of much better quality than the NGOs have been able to provide and expand to 500 or so within the next year or two. This is found to be very popular because people are able to go there whenever they fall sick, get better and get back to work, then they come back again if they fall ill and are taken care of.

There are two others aspects that are important to the treatment. The next part is the third part of the strategy's treatment. Two years ago we started when we announced the public policy that we
would provide ART to our HIV patients; that was sometime in May 2004 and we launched the first AIDS centers. Today we have 52 centers. Almost 30,000 people are getting free treatment. Another 10,000 to 20,000 are getting from the private sector on their own, largely because they probably don't want to come to government centers for HIV care, mainly because of stigma and fear of recognition and probably they can afford to buy their own drugs.

Our estimate is that about 50,000 people in India are accessing antiretroviral treatment. At present, right now, we have done the training, we have the equipment, we've purchased the drugs, in a month's time we should be expanding and opening another 46 centers, taking the total number to 100 centers. We should be able to provide feasible access to ART to 100,000 people.

The challenge is in identifying these people and ensuring that they know their risk status, and that they're able to take advantage of the availability of the service and come forward. I am quite sure
that that's not a big problem because, informally, I am told already that almost 65,000 people have registered in the centers for treatment. I am sure that I will be able to reach my target of
100,000 which, under the Global Fund Project, was put as end of 2007 or 2008. I think in a couple of months we should be able to reach the target. This shows a huge demand for ART treatment and brings alongside testing and counseling facilities. As people get to know their risk status, they are coming forward to the government centers and taking care and treatment from us.

What is really of concern, again, is that recently, in the last couple of months, we've got the Indian Association of Pediatrics to come up with a treatment protocol for children. We only have 1,300
children on treatment. Epidemiologically, the estimations show that we should be having at least 30,000 to 40,000 of them. But we have only 1,300, so that's a huge gap and we are aware of the gap. We now have the treatment protocols done. In June, we are going to be talking to the pharmaceutical industry and trying to get them to manufacture the drugs and the medicine in children's dosages. Once that's done, about 10,000 children will able to get access. The Clinton Foundation has generously come forward to help us procure these drugs. They are cheap by your standards, but by our standards they are quite expensive for pediatric drugs.

I know in the US it is nothing much, but in terms of the Indian Rupee, it's a lot. Therefore, I want to make mention of the Clinton Foundation's generous offer. We are very grateful to them. The
Global Fund is also another source, but this was so ready that we got plans done and the next day they said, "We are willing to help you." So I should be able to roll this out. Once the response picks up, we should be ready for 30,000 because now the protocols are done. We are also developing about 7 to 10 premier institutions for allied health and developing the capacity among pediatricians and the other staff. You need the critical equipment for the backstopping of this whole activity.

Finally, the mother-to-child transmission should, of course, come under the prevention, but since it is so involved with drugs, I tend to keep it under treatment. That's another area of great focus where we need to do a lot more. Mother-to-child transmission; here again, we've changed our protocols and the treatment regimen. We were on a particular treatment which is very, very, very inexpensive, but now we have taken much more of the combination drug regimen. So that
[inaudible] again a whole capacity building in terms of training, in terms of logistics, in terms of ensuring drug adherence, and in terms of reaching out to the mothers.

Finally, what is of great inspiration to me, I would say while in this program, is that there is a huge network of the PLHAs that we've been able to form. Increasingly and rapidly, we are able to
get the people living with AIDS to work in the program with us. They work with us as outreach workers and we want to formalize their involvement right from top to bottom in all levels of our work. I feel that they bring in a lot of compassion, a lot of feeling, a human face to the whole program, and inspire their other colleagues along also.

To the Civil Society and the GPA strategies, I think we have a huge number of partners with whom we are working. Finally, the challenge will be in trying to come up with a comprehensive that will keep a fine balance between prevention, support, and treatment because all three are critical and we just simply cannot give up any one of those components. So that is the challenge. Thank you very much for this opportunity. I am grateful to you for inviting me here.