A Human Question: 15th International AIDS Conference in Bangkok 3
Director: T. Jayashree
Duration: 00:41:15; Aspect Ratio: 1.333:1; Hue: 346.168; Saturation: 0.114; Lightness: 0.350; Volume: 0.101; Cuts per Minute: 24.118; Words per Minute: 125.875
Summary: Tracing the story of the global struggle to make HIV/AIDS drugs more affordable and available, A Human Question raises key questions of whether private ownership of knowledge can be at the cost of human life?
Shots of Richard Gere walking about, drinking something
dr. suniti solomon
Helen Gate from the Bill and Melinda Gates Foundation introduces the panel.
Hi. Good afternoon. I'm Helene Gale with the Bill and Melinda Gates Foundation, and thank you for coming to this media briefing on Fighting AIDS in India. It's a pleasure to have you here with us to spend about an hour getting updates on activities going on in India, the epidemic in India, and hear from some key people who are doing work to look at stemming the tide of HIV and provide care to people living with HIV in India. As I think many of you know, India is one of the leading countries in terms of number of people infected with HIV. It's estimated that somewhere in the range of 5 million people in India are already infected with HIV and the epidemic is spreading rapidly. The number of HIV infected people has increased 10% each year for the last two years. So clearly in this country with over a billion people, the impact of even a small increase in HIV infection could have a huge impact in terms of the global numbers of HIV. So there's really an urgency and a window of opportunity to make a difference in fighting the spread of HIV in India, halting the spared, but also an important opportunity to provide high quality care to people already infected with HIV. I'm going to...we're hoping to be joined by Mr Prasada Rao, who's the Secretary of Health for the Indian Ministry of Heath and Family Welfare. But we're not sure yet whether he's going to be able to come and talk a little bit about India's response...the government's response to the epidemic. But in the meantime we have three outstanding presenters - first, we'll have Suniti Solomon who is the Director of YRG Care. Suniti is a medical doctor who treated the first case of AIDS in India in 1986. We're also pleased because she's on the board of the organization, the activity that the Bill and Melinda Gates Foundation supports in India - Avahan, which Mr Ashok Alexander will speak more about. And to my right is Mr Ashok Alexander, who is the Director of Avahan which is the Bill and Melinda Gates program in India. And to my far left is Richard Gere, who is the Director of the Gere Foundation's HIV activity in India, and as many of you know, is also a star of stage and screen. So we're happy to have Suniti Solomon, Richard Gere and Ashok Alexander join us for this press conference. I'm going to first turn over the floor to Suniti to talk about some of the work she's been involved in, in providing care to people living with HIV AIDS in India.
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Suniti : When I first detected the person with HIV in India in 1986, I never ever dreamt that India will have 5 million people in the 15 years the virus has been around, which roughly shows that 1 in every 7 persons in the world with HIV is an Indian. And we have a billion people already. When I started my organization - I was working for the government for 20 years as a Professor of Microbiology in Madras Medical College when we found the positive people - and then I found I needed to do more than just being in the government. So I took early retirement and started my organization with about 3 people in the organization. We couldn't get an office to start HIV work because people were so discriminating - persons with HIV - the stigma towards the disease was so high, that we couldn't get an office. Finally, we found 3 rooms in an apartment, and my laboratory was 4 by 4 - a kitchen. Today we have built 3 floors, we take care of 7000 patients, we have 140 people working in the organization, and we have a laboratory which is 4000 sq. feet, and we do all the tests right from the hemoglobin to the resistant testing of the virus. And that is what we have achieved in the last 10 years.
Talks about the changing climate of HIV in India over the past 15 years and her own work.
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Discusses HIV infection rates in India and its reliability.
Now as to the numbers, everybody wants to know - is the 5 million right? 90% of people in India don't know they are positive. We used to see one patient a week in 1994; today I see 25 new patients a day. So that's where we're rising. So we definitely know the trends. The numbers are going up. Not much of incidence studies have been done, we just do the sentinel surveillance and the prevalence, and the prevalence in different states, especially in six states of India, is going up. Now also I would like to tell you that this disease is not just a medical problem in India - it is much more than that. It is a cultural problem. Because in India there are a number of cultures. For example, people have to get married, and marriages are not made in heaven in India, they are arranged, and so we arrange marriages for positive people, and that's a big help we're giving to people with the infection. ___ discord in couples, there's a fertility pressure on the woman, and we're helping with artificial insemination, so marriages would continue to survive. Otherwise the women are willing to pick up the virus rather than give up the marriage. 80% of women I'm taking care of have a single partner, and that's their husband. So there are a number of cultural problems. Now when it comes to drugs, ARV's, when we first started in '96, 2% of those who need the drug were on the drug. Today 40% of those who need the drugs are on the drugs in my organization. The government has planned to roll out, and they did on April 1st, but it hasn't been real. We've had lots of problems with it.
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The other important thing YRG Care is doing is research. And we do research that is useful for a developing country. For example, to follow up patients, to monitor them when they are on art, is more expensive than the drugs themselves, because the drugs cost 30$ a month for my patients. But testing them every 3 months will cost about 10$ for __ and ___. So we have validated tests which are much less - it costs 2$. So this is the kind of research and operation care research YRG care is into. On the whole, I would say it is a one-stop shop starting from prevention to research - almost the whole range of things we are doing at the Centre.
Discusses the research undertaken by YRG Care.
Helene : Thank you, Suniti. And next we'll hear from Ashok Alexander. As I mentioned, he directs the Bill and Melinda Gates Foundation India AIDS Initiative. And we're pleased that Ashok joined the organization about 18 months ago to take over the program after we announced a $200 million commitment to working with India to halt the spread of HIV.
bill and melinda gates foundation
Discusses Avahan and its work.
Good Afternoon. We call our India AIDS Initiative Avahan - that's a Sanskrit word which means a call to action, and it's an appropriate name for our initiative because the epidemic as we see it, working on the ground now in India, is progressing quite steadily, quite inevitably, and we believe that it will inevitably reach some kind of tipping point in the future, and that will be a very dangerous point. So we are here in India to mount a very aggressive programme focused on prevention. We have a short period, we believe, to do that. The consequences of an AIDS epidemic in India would be very severe, particularly severe, the socio-economic consequences. We have, for example, a population of young people - people under 24 is more than 51% of the population, far higher than China and many other countries. We have made...the Foundation has made an outlay of $200 million over 5 years to tackle this epidemic. Now it's a complex epidemic, and perhaps in many ways might be unique in some aspects of the epidemic.
aggressive programme focused onp revention
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Discusses the scale of the HIV epidemic in India.
One aspect of the epidemic is the sheer scale of India. So we're talking about an epidemic which is now highest in six states. Several of those states if they were countries would be featured in the world's top 10 countries. Distances are very large. It takes almost as time to get from Delhi to say, Bagalkot in North Karnataka, as it does from Delhi to New York, one of our intervention sites. Diversity - these states are not uniform, so that has intervention implications. Each state has typically 25 to 30 districts, and the districts are sometimes like small countries, very different from each other though they may be next to each other. Third, the fact that the most vulnerable groups are also very mobile. So it's not as though CSWs can be found in a brother in one location. They are typically moving around very large sections of the country - both the clients, as well as sex workers, as well as labour, all kinds of risk groups are moving around. That mobility adds to the complexity. The fourth aspect, I think, of the epidemic is resources. Resources available to tackle the epidemic in India are very scarce. There's about 19 cents per capita that is going into tackling this epidemic in India. Countries that were successful in tackling the epidemic spent a lot more. Uganda, for example, spends $1.85 per capita, Thailand closer to a dollar. Finally I would add, what is I think the biggest barrier to our prevention programme which is indifference, stigma, apathy, a lot of denial. There's still ways to go in India before we're seized with the gravity of the epidemic, and the worry is that by the time that happens, it'll be too late.
barrier to prevention
scale of the hiv epidemic in india
Discusses the overall approach of the Avahan programs.
The approach that we're following is to work in six states and on the national highway system, and to focus on high risk populations, primarily sex workers and their clients, and a few select districts. We're trying to bring a package of good intervention, making sure condoms are available, that STDs are cleaned, and provided good medical service, good communications, and that we do all of our efforts by mobilizing the communities themselves, as opposed to an outside-in approach. All of this will be supported by efforts in communications, in advocacy, in research, in capacity-building, so that we try over time to build a sustainable solution owned by Indian partners.
high risk populations
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It's too early to talk about what we've achieved. I think we've only stARTed, but I think perhaps we can talk about a few good things that have stARTed happening. We have moved sizeable amount of our grant into implementation, a $130m to be exact is at work already. We have I think a very exciting set of partnerships falling into place. We have a partnership with the Indian Oil Corporation, not your typical NGO, it's India's largest company - they open up gas stations right along the highways. We have good partnerships going with government at every level. We have a great partnership, I'm happy to say, stARTing with Richard and his group. So all kinds of partners coming together here, and I think that's an exciting aspect.
Talks about Avahan's achievements over the years.
indian oil corporation
I think, finally, I'd like to say that we making some bold experiments, and if they work we'd have something to show for the impact of those experiments. We're trying to create a national franchise of STI services, we're trying to build scale in what we're doing by creating alliances of partners, we're tying to put both public and private partners together, and we're trying to be innovative in the way we evaluate our program and attribute impact to it. So thank you. That's my summary at this stage.
Talks about the innovation in Avahan programs.
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Helene : Thank You. We'll now turn the floor over to Richard Gere. We, as Ashok said, recently stARTed a collaboration with the Gere Foundation. We're really please to have that partnership, and really pleased that Richard has lent his celebrity status, but more than that, his commitment, his time, his energy and his resources to working on fighting AIDS in India
Richard Gere : Thanks, Helen. Um...welcome. I haven't done this too much, but I'm going to do it now. I want to thank the Gates Foundation for really being a leader in this work in India. There is no way that that many of these programs that are coming together would have happened without their leadership and ability to see things in the whole, in the round, holistically. It's the first time, I think, that anyone is coming to India programmatically, and with a large overview of the different ways we can attack this mammoth problem. We're playing a very small part in that, but we want to do a good job, and I think we're beginning now to see how we can do that. About 3 years ago, after a few false stARTs and maybe a little naivetÈ about how we were going to deal with the problem in India, we decided the best thing to do to use my energy effectively in my foundation was to evolve a model which is initially fired by what I can bring best to this, which is my ability to organize the creative community in any country I work in. And so immediately we stARTed to organize the film community in Mumbai, very much with the help of my great partner her, Parmesh Godrej, and I think we were very successful with that. What we were less successful at was gaining access to media companies in a very serious and committed way as partners, and that really stARTed to happen again about...a short time ago. I actually was being very frustrated in my attempts to energize the media community in India, and it was a phone call that I had with Roger ____ in New York - who invented News Corporation, and was an old friend of mine from movie days when I had done some research on media consultants, and that's where he had stARTed his career. I asked him for some advice on how we could stART to organize media in India, and he said, look, I think where you want to go is James Murdoch, who was Rupert's son, who was running Star (he's with Sky now) out of Hong Kong, and that included India. We got on the phone and we stARTed talking, and very clearly I could sense that this was someone who cared, and who wanted to be a good citizen, his own words, a good citizen in India. And so we stARTed then engaging, in a very open and creative way what we can do, not in the usual sense of using the media outlet as, would you put one of our PSA's on at 2.30 in the morning, but to take them on as partners. And it meant a lot of talk, a lot of negotiation, a lot of nurturing from both sides, learning about the disease, educating not only executives but staff, and below staff. And then at that point, really being creative and saying, AIDS is a product, how do we sell the product, how do we sell this product AIDS in terms of what is the disease, how do you get it, how do you protect yourself from it. And it stARTed a whole level of creativity that's not normally used in the PSA world. A true partnership that is creative and vital.
Discusses the process of organizing the media in India around the issue of HIV/AIDS and the achievements of the Gates Foundation in Inidia.
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We evolved a program, which I think is unique, actually - a 3-year programme with Star that includes many many thousands of PSA's which in the end, I think, amounts to about $14 million worth of PSA time, but it's actually more than that, because of the creative involvement of Star. That's evolved also with other companies that we're now dealing with and negotiating very specific programs - one is NDTV, which is the CNN, essentially, of India. Sun TV in Chennai, which is in the south in Tamil Nadu, which has the highest prevalence rate in India. They have access to about 80% of the television families, households in India, in the south. It's quite extraordinary. They're also bringing their creativity, and invention, and energy to this. Another way, we're seeing this holistically, is to use print and radio also. Hindu is becoming a partner with us, and I think what we want to do is, for instance, if we have a telethon, which we may well do in India, or do some specific work in terms of concerts with MTV, we also have partnerships with Hindu in terms of having foldouts or giveaways inside, which would be a card, a keeping card - would be highly decorated...something a mother and a family would want to keep and put in that a drawer with medical things, which would have pertinent information about HIV/AIDS. And a hotline number, and part of our strategy and our model is to create this hotline. And I think of the events that we're planning for this next year, that is really the outcome we're looking for.
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Talks about the basic model of using celebrities to speak directly to the people.
The model that I think is really important is holistic in terms of all society and I think, if you're going to leave anybody out, you're going to be unsuccessful. And I think that's why it's been unsuccessful originally in the US - it took many years to get a handle on this problem. But the basic model is using celebrities - in a broad sense - culturally iconic people, whether they are actors, athletes, musicians, dancers, poets, whatever it may be, people who reflect the heART of the society and can speak directly and very quickly to the heART of the society, married with emotionally involved people from the leading industries. And then from the plastic industries as well. My friend Parmeshwar comes from one of the large industrial families and want to create programs that is actually teaching and educating within industry itself. It's a very powerful way to deal with people, how the family deals with health, how your employer has expectations but provides care, and provides education and possibilities, and strategies for you. The next marriage we have is really the people we serve, which is the NGO community, and Dr Solomon really is one of the key people in that area. They're the ones on the ground who're everyday working with people, the ones who understand the issues of the disease itself, and strategies to eradicate it, which is very much dependent on the culture it arises in, as she said before. And India has its own peculiar and unique problems.
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The other part of the community, it's the last one I go to, frankly, is government. And in this case, the leadership of government is going to be incredibly important. But it may not be the first one one would want to go to, and I think that's why Gates has been so extraordinary in this. They have in fact been providing the leadership that normally would be coming from government. I think the hope is here now that the train is in motion, the new leadership, which has been talking about AIDS, which is not afraid of the subject and demonstrated commitment, will be a true partner in leadership in the eradication of HIV/AIDS. So I'll stop there.
Talks about the importance of government leadership and how the work of the Gates Foundation has strengthened policies working with this group.
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Ashok : Before questions, I was just asked to make an announcement here. Richard and his group - one of the first things they did - with remarkable speed they produced two PSA's. I don't think that Richard knew that we were ready to air those, but they're only 25 second each. The person in this PSA is Rahul Dravid, the vice-captain of the cricket team
Gere : Another important partner is Kaiser Family Foundation, who really have been the strategic partner for us in teaching us how to use media properly. They're really an extraordinary group, who understand the issues of health and communication. And we would not be here without them. ...(followed by PSA and general banter)
kaiser family foundation
Audience Member : I'm very interested to know about the gender dimension in India. It's obviously quite unusual compared to what we're used to in Africa. Could you amplify that situation, and what it means for women in particular?
gender and HIV/AIDS in India
Discusses gender and HIV/AIDS in India.
Suniti : I think, like in Africa, the women are at the receiving end of this epidemic, because as I told you in my talk, 88% of the girls who are infected have a single partner. The interventions by the government and the NGOs have been at the high-risk population, that's the sex-worker group, and I think they are much much more empowered today than the housewife in India. So a sex worker can tell the client, use a condom or get lost, but a housewife can never do that in India. So they need to be empowered. The woman is the one who is at the receiving end, the man gives the infection to her, she nurses the guy after that, then the children get infected, and finally when everything is lost she has nothing. The inheritance doesn't come to her, she is left with the infection, and when she is dying, she is dying on our shoulders, who are taking care of people with the virus. I forgot to tell in my talk that we have not received 1 Rs for care for people with HIV for today. All our funding has been for research and prevention. So what we get from care is, I'm looking up at Richard now, because we don't get very often Richards and Gates coming up like this, and definitely we need money to help the women who are in trouble in India.
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Audience Member : My question is to the entire panel. Ashok, you mentioned that you were facing apathy and indifference. How much of that is the result of the government? How much apathy is there in the government? My second question is, has the private sector in India been at all involved in the fight against AIDS? India's not a rich country, but I know there are several people like Gates and Gere. Have the private businessmen contributed any money to this fight?
Talks about the problem of apathy and indifference.
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Ashok : Very quickly, I wouldn't single out the government as the culprit, the reason behind the apathy. If anything I think government is doing more and more. But the apathy and the indifference comes from the general public, it comes from the media, it comes from business houses. I think India is very slow to wake up to this epidemic, so I would say the apathy is quite widespread. I'd also say that there are two or three or four great examples of business houses doing great stuff, like IOC, our partner, or the Tatas. But by and large, Indian business is doing very little today to support the epidemic and that's one of the things we hope to change.
Says that apathy as an issue is a broader problem and goes beyond just the government.
apathy as an issue
Helene : Just to add to that, on the board of our project we do have several prominent Indian businessmen like Mr Ratan Tata who has a huge trucking empire, and other business leaders like that. We hope that this is one of the areas that we can work on, really engaging the business community more to get involved in the fight against HIV/AIDS.
engaging the business community
Gere : I'd like to also say that Godrej Industries is also been someone who stepped forward because of Parmesh and Adi, her husband. But this also, from our point of view, is critical to deal with the problem. There's no question about it, that it has to come from private industry, and I see it from my own sector too, the celebrity, the creative community has to step forward in a way that they have not. They're willing to, but we're in the process of organizing in that way to make it effective. But again, I think it's desperately important that private industry does take the first step here. But it's all meaningless if the government doesn't take it seriously.
Talks about other examples of how the business community has become involved.
Suniti : I can give you a little bit about the industry and what we had to do with them. Many of the industries in India in the early days used to do a mandatory testing of all their employees, and we managed to get a patient from one of these big MNCs and we landed in their office and said, this is not right for you to do it, and we got the vice-president from Washington to fly in, and that was Ford Motor India, and then she understood that we needed to train people, or give awareness to their employees, so through the industry we're getting money now for care of our patients, for every person trained in an industry we get 2$. So Ford Motors India had 2000 people; we made $4000 which was enough to treat many many poor patients, and following this 26 industries we went into. So I think by giving awareness both to the management and to the employees, we can prevent the virus in most of these industries.
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Talks about mandatory HIV testing.
Audience Member : Could you elaborate on the problems you were discussing in the program to roll out ARV drugs, the government program?
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Suniti : The government in December, this was our previous government, you all know our government changed in the last election. The previous government had promise that April 1st, they would roll out ART to 100,000 people in the next one year. So on April 1st, 11 government hospitals in India did roll out, but the numbers hadn't come anywhere near what we thought would come. And the other major problem is training of doctors to handle ARVs, explaining about the side-effects; the other very important is the adherence to the drugs, and people, I think, didn't realize that it's a lifelong treatment. And the first line of drugs are quite cheap. It's roughly about $240 per year, that's what the Clinton had negotiated, it's something like 40 cents a day. So if that is the first line of drugs, we already have resistant strains going around in India. In a study we did, we found 11 % of people who are ART-naive, are resistant to MMRTI, which is the first line of drugs, which means we have to go to the second line which is more expensive. So I think we need to take into account capacity-building, having counselors for adherence, and be ready to switch on to the next level of drugs before we had planned to roll these out. I think that was a little mistake, but then, we're trying to make it up.
Talks about the program of roll out of ARV drugs.
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Gere : I'd like to add to that. You have to understand that the government last year budgeted for a little over $5 million for HIV AIDS - total. Not a lot you can do with that.
Audience Member : I'm wondering if it's possible in every part of India to have free and anonymous testing and counseling.
free and anonymous testing and counseling
Ashok : Right now you have voluntary counseling and testing centres under the government apparatus in every district in India, and these tests are subsidized, so in theory a large number of people can avail of these services. The challenges are actually of adequate counseling around the VCT, but more fundamentally around the stigma associated with it which prevents people coming forward. So think it's more on the demand side that you have an issue as opposed to the supply, VCT at least.
Discusses voluntary counseling and testing centers in India.
voluntary counseling and testing centers
Asks about anonymous HIV testing and the role of nutrition in the epidemic.
Audience member : Can we not have HIV anonymous? That's number one. Number two - the recent study of John Hopkins University along with WHO has proved that nutrition plays a very important rule in childhood disorders, including early deaths, etc. In your treatment, have you used diet and nutrition? If so, how much? Why do we always begin and end our discussion with only ARVs which are known carcinogens, which were withdrawn in 1965? How can we give known carcinogens to mothers and their children? Are we not mutating the DNA?
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Suniti : I'll do your first question - nutrition. Yes, we very much know before ARTs were available, we concentrated on nutrition and it was easy for me to find 365 good friends out of one billion people in India, and I made sure that on their birthdays they donate me 1000 Rs and I give food to all my patients. They get 3 meals a day, free of cost, and the same question you asked me I was asked in Barcelona, and I said the same thing. And there was one person from the Andrew Zeigler Association in San Francisco, who said from today you don't need to collect money from your friends. I have 365 friends in San Francisco, so I get 40 dollars a day from her. And that's how we give patients good nutrition - it's very very important. And I know treating opportunistic infections and giving chemoprophylaxis can help to get a good quality of life. But from our experience, we found that ART go far above all this, and if a patient can get ART, I think that's the ultimate. Because I treat it like a chronic disease today, not like a killer disease anymore. And your second question, I think Helene will answer.
Andrew Zeigler Association
Discusses the importance of nutrition in YRG Care programs.
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Helene : Well I was just going to say, about whether or not these drugs are carcinogenic, that's not been the evidence, and what Dr Solomon said, there's been global evidence that ART has really change the face of HIV disease around the world. So it's something that now has years of evidence of being effective in slowing down the rate of progression, in slowing down death, and other opportunistic infections in people living with HIV. I will say though, I think, one of the things, as your question stARTed out with, why do we always talk about ARV's, I think that there are other things that can also be done for people living with HIV in the meantime, while roll out of ARV takes place. So nutrition is one, treating TB, which is the single leading killer of people living with HIV in developing countries, other opportunistic infections, and so there are many things which I think sometimes we don't think about, because there has been such a focus, a rightful focus but ARVs are still going to take time, and there are things like, particularly, treating TB that can be done now for people living with HIV.
global evidence about ART
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Ashok : I'd just like to make a small point on this nutrition - not about nutrition, but there's always a risk that you can seek out a simple answer to a very complex problem. Nutrition is a basic problem in India to a bunch of poor people, HIV thrives because of poverty, and women sell themselves for a dollar for transaction because they don't have the nutrition to give to their child. So the notion of... centres of excellence like Dr Solomon's are hardly one or two in the whole country, the vast majority can't even get food, leave alone good nutrition. So I think it's a very complex epidemic, and we can't have...unfortunately we don't have very simple solutions like this.
Talks about the fact that HIV/AIDS is a complex epidemic with many dimensions.
centers of excellence
(Audience Question)-Tape Change