AIDS Decade in Review With Larry Kramer, Richard Marlink, MD, and Pernessa Seele

Last Editorial Review: 10/23/2003

WebMD Live Events Transcript

It was the decade of protease inhibitors, safe sex, Lazarus, and survivor guilt. Join Larry Kramer, Richard Marlink, MD, and Pernessa Seele for a special interactive audiocast to reflect on AIDS in the '90s.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Event Moderator: Welcome to WebMD's special interactive audiocast! We have a great show today. The topic is "AIDS: Decade in Review," and to reflect on AIDS in the 90's, we have a wonderful panel of guests joining us for the hour.

Larry Kramer is a writer and AIDS activist. He is a co-founder of Gay Men's Health Crisis, AIDS Coalition to Unleash Power (known as ACT UP), and Treatment Data Project. He is the author of 'The Normal Heart,' 'Faggots,' and 'The Destiny of Me.'

Dr. Richard Marlink is the senior research director and lecturer at the Department of Immunology and Infectious Diseases at the Harvard School of Public Health, and executive director of the Harvard AIDS Institute.

We also have Pernessa Seele, who is the founder and CEO of The Balm in Gilead Inc., an organization working through African-American churches to stop the spread of HIV/AIDS in the African-American community and to support those infected with and affected by HIV/AIDS.

To everyone out there listening, remember, you can submit questions and comments for our guests at any time during this hour. Simply type in the question line and click submit or hit enter.

A big welcome to all of our guests, and thank you for joining us today.

Ms. Seele: Thank you for having us.

Mr. Kramer: You're welcome. Let's go.

Event Moderator: Well, we've reached the millennium, and AIDS has been around for over two decades now. Many people thought it would be over by now, that a cure would have already been found. UNAIDS recently reported that 2.6 million people died of AIDS in 1999, which is the largest number ever for a single year. The AIDS pandemic has taken 16 million lives since 1980. Fifty million people have been infected since then, 33 million of which are still alive, and 5.6 million of those infections occurred in 1999. Also very important to note is that 95 percent of infections are in developing nations, and these are the countries that account for only 10 percent of the world's wealth. So that's where the numbers stand at the beginning of 2000.

Mr. Kramer: Yes, but those numbers are just peanuts compared to what we're facing, and make it sound -- if I may say so, relatively puny. There was a figure in Time magazine in the end of their year issue, put out by Dr. David Ho at Rockefeller, who said that 1 billion people are going to be infected by the year 2002. One billion people! So that makes the -- you know, the few millions that you mentioned which are figures that our government puts out, usually woefully way behind, sound very small indeed, and terrifyingly small.

Dr. Marlink: This is Richard Marlink. Larry, I agree. It's sad though that after two decades, we still have to have these numbing numbers to gather attention, and the fact that the millions and the hundreds of thousands in this country don't gather enough attention is perhaps the sad part of that prediction.

Mr. Kramer: Well, we've had to fact that since the beginning. I think that maybe I would like to spend this hour scaring people, quite frankly, because I think that the passivity has become terribly, terribly dangerous. I think in America we somehow feel that it's gone away because of very wrong-headed articles in the New York Times Magazine and by people like Andrew Sullivan saying AIDS has gone away, and we've now discovered, very much so that it hasn't, and that these drugs that everybody said were going to cure us, aren't going to cure us.

Dr. Marlink: I was getting off a plane when that article came out. I had just gotten back from Africa, and it literally made me cry when I saw that -- the sentiment is AIDS is over, and we know it's not over.

Mr. Kramer: I think, for those of who follow the literature, the medical literature, what's no longer beginning -- what's appearing more and more, is terribly frightening reports that the proteases, the cocktails simply are not working in a larger and larger percentage of people, and that these new drugs that are coming out right, left, and center have such horrendous side effects that people simply are beginning to refuse to take them. I think, for instance, it's unconscionable  for a company like DuPont to put out a drug like Sustiva, which has side effects that are so overwhelmingly awful that my doctor here at NYU says that 50 percent of his patients can't tolerate it, and that's a new drug. How are we going to get drugs for Africa? How are we going to get drugs that people around the world are capable of taking simply if the stuff that they shovel down our throats here is so grotesque? You should read the list of side effects that Sustiva causes in people, that they even print in their ads. This is a third -- a second or third generation drug. I begged Dr. Fouche at NIH and he said he would follow through -- that we really must start putting pressure on the pharmaceutical companies to make us drugs that don't have such horrible side effects. A third generation drug should not be harder to take than a first generation drug, I'm sorry. I'm really passionate about all this. And more and more people I know are refusing to take drugs at all, which is very interesting. They'd rather just not feel that sick. And if the drug companies -- maybe that's the way to deal with the drug companies. If everybody would stop taking their drugs, then they wouldn't be making the billions that they make if they put out a new drug.

Ms. Seele: This is Pernessa Seele. I think that when we look at the global issue of HIV and drugs, and you talk about 1 billion by 2002 -- people infected, and most of those people being in undeveloped countries -- here in this country we are having a conversation about the option to take the drugs. The epidemic is -- in other countries they don't even have options to take the drugs, because there are no drugs, because taking drugs is really directly linked to your economic status. And so, when we look at the epidemic today, what are we going to do about the world and AIDS and people just don't have drugs. So I think -- the epidemic has gotten to a place where we have to look at so many issues in terms of -- in this country to get proper drugs that people can take and be effective -- at the same time, deal with the pharmaceutical companies to make these drugs available where anybody can take them in Africa. The census in Africa and India and third would countries -- unfortunately, they're not even at a place to say, you know, "these are the harsh." They are like "we don't even have drugs."

Mr. Kramer: It's interesting that it's not a campaign issue, that nobody is asking Gore or Bush what they would do about getting drugs that American taxpayers have basically financed into the hands at a reasonable price of the rest of the world. I mean, it's just an unconscionable greed.

Ms. Seele: That's exactly what it is, greed.

Mr. Kramer: It's murder. It's murder. We are murdering the rest of the world. We paid for these drugs to be developed and we have to pay through the nose for them ourselves.

Dr. Marlink: If I could interject -- this is Marlink again. The cost is a huge issue, and then the issues, as Pernessa was saying, even go beyond that in that both -- the basics needed in many places are from basic laboratory diagnostics, to treatment of opportunistic infections, to prevention of opportunistic infections, to basic nutrition, to care of the dying, or analgesics or pain medicines -- on and on. Those can be worked on and those also have their costs. But the other parts are also infrastructure -- we use that term too often, but that usually boils down to training, money, and structures -- both physical and administrative structures, that are long term, and it's not a quick fix and it's not until --

Mr. Kramer: That's why I think it's so important that if we're going to be the guinea pigs for these drugs for the rest of the world, which we're more than willing to be, somehow we have got to find a way to make these drugs cheaper and simpler while we test them to see if they're safe so they can then b sent overseas. That's basic. We've learned a lot from these drugs, but what we're learning now is that what we have to send overseas is, quite frankly, so awful that we can't send them overseas.

Dr.  Marlink: Right. It's almost regardless of the cost, they're not usable in most settings.

Mr. Kramer: They're not usable, exactly. And the other thing that nobody pays any attention to is that we simply do not have any data -- sufficient data -- to know which of these drugs works and in which combination. The drug company makes the drug, unleashes it on the world, goes on to merrily develop another poison without continuing to test the stuff that's out there. There is no database that is worth anything. We've had a terribly difficult time trying to get this project called Treatment Data Project -- Rodger McFarlane -- off the ground which, quite frankly, we were wooed by WebMD, they announced it publicly to the world that they were going to put this database online so that we could all enter our own data into a secure web site and we would have hundreds of thousands of people around the world plugging in their own data so we would know which combinations were working and what the side effects were. It's a wonderful idea and it's taken us two years of WebMD not answering our phone calls after having announced to the world that they were going to do it. I hope this will get to the eyes of somebody at WebMD, who'll just finally say, "come on, guys, keep your promise here." We need this database.

Dr. Marlink: That was the usefulness of the idea, and also the fact that that database does not exist anywhere --

Mr. Kramer: Anywhere. Anywhere.

Dr. Marlink: -- is a national crime.

Mr. Kramer: We're finding out, for instance, that 50 percent of people who take certain drugs die from liver disease rather than AIDS, because the drugs are so harsh on the liver. That would turn up in a database a lot faster than any other way.

Event Moderator: I'm going to interrupt you guys for a second to get to some of the questions that are coming in right now from the audience. Let's take a look at this one. It says: We've seen AIDS pass through the Reagan Administration, then Bush, and onto Clinton. Any comments on how the current Clinton Administration has fared in addressing the epidemic?

Mr. Kramer: He's as worse and just as bad as all the rest. I mean, the politics of this disease are so awful that -- you know, Clinton said all the right things. He didn't do any better than -- than certainly -- don't get me started; I hate them all.

Dr. Marlink: I think that when AIDS has taught all of us and -- it teaches us many things. One thing it does teach us is that leadership is required, and leadership is not necessarily who the leaders are. Leadership may not be the popular choice -- the person taking the unpopular choice, and really going down the path that --

Mr. Kramer: That's well said, Rick.

Dr. Marlink: -- is less traveled, and may take courage. Politics, by their nature, selects the people that are going to say what the majority want to hear rather than perhaps lead us.

Mr. Kramer: Did you read that article in The Times today about George Bush and the death penalty in Texas?

Dr. Marlink: No.

Mr. Kramer: He has put more people to death in the electric chair than any other governor in the history of America. I mean, this is a man that's going to help us? Thanks a lot.

Ms. Seele: I think that we have to look at -- it's not just a issue of what President Clinton has done. AIDS is such a big business and it's so political. It's not just one leader, it's looking at Congress. It's looking at the leadership in government. It's looking at political leadership in our own communities. And when you look at the whole picture, certainly we have definitely -- our political structure has always failed us when we have dealt with HIV. And I think the present administration has done some good, but have they done enough? Absolutely not! Absolutely not! But I think that we should look at the entire political structure and how the political structure has failed in this epidemic for yet another decade.

Mr. Kramer: I want to say -- this is Larry again -- that unfortunately, those who -- most of the activists, the AIDS activists, who speak for us now are so in the pockets of the bureaucracy of the drug companies of the anti AIDS, that they have become almost fascist in ramming down their treatment notions down the rest of us. The research that is done today is pretty much dictated by a small handful of pea brains called Treatment Action Group, TAG, which has a stranglehold on what is researched, what the drug companies release, how it's tested, and that is the guidelines that all of us are told to take all of this poison more and more of it -- that that all comes out of a handful of people, because -- namely because the rest of us aren't out there fighting, forcing -- the power is in numbers, not just in a few of us.


A Timeline of the HIV/AIDS Pandemic See Slideshow

Ms. Seele: Well, I also think that -- you know, Larry, we're talking about a decade in review. In the beginning of this epidemic, you and Rodger McFarlane and your crew, you all really, really -- you went to hell and developed a political structure that had to respond to HIV.

Dr. Marlink: He also told some other people to go to hell.

Ms. Seele: Exactly. But you know, when you came on the line, Rick, you talked about the lack of a serious response of people of color. As an African-American, one of our frustrations is that we did not see the political activism that has continued, that Larry and Rodger really made attention on this AIDS epidemic. And I think the kind of political activism that Larry did in the early part of this epidemic really made, made the politicians take note, and something happen. But that's gone today. And we are now looking at how do we now restructure that kind of political activism to get that kind of attention that we need today. The bottom line: Who cares about AIDS in Africa? Who cares about it? You're talking about -- well, for some -- some people do care more about AIDS in Africa than they do about AIDS in America. And that's a challenge that we have today. But something has happened in this past decade about the political -- not only just the response of the politicians, but the response of the community to make the politicians do what's necessary.

Mr. Kramer: Pernessa, that was so beautifully said. That's the tragedy that we have to confront every day. Nobody has an answer how to fix it, how to get everybody off their butt again, how to make people angry again. Everybody's feeling too good somehow, or whatever. I don't know.

Event Moderator: This brings us to our next question, which is: Can we stop complaining and look for some solutions? How do we do such a thing?

Mr. Kramer: We've got solutions. Never stop complaining, I'm sorry, you've got to let the world know when you've got something to gripe about. I'm sorry. The squeaky wheel gets the most grease, and anybody who says otherwise is a fool. The solutions in whoever, whatever, what dreamer ever asked that question, requires money, requires leadership, all the things we're talking about. And I don't know how you do those over night and I don't think anybody else does either.

Dr. Marlink: Well, I agree about the -- I didn't mean to laugh about the complaining. I think that the squeaky wheel does get the grease. This is Marlink again. Things can be done. They take work, and they take long term commitment. 

Mr. Kramer: Exactly. You have to get up every morning, every day, and say "what am I gonna do today to fight for this -- for my cause." That's what activism is about. You cannot take a vacation one day at all. You cannot take a Sunday off. You cannot take a Saturday off. It is never ending and it is exhausting, and no sooner do you think you've got something then it all evaporates in your hands. But you cannot stop, and people are simply not prepared to make that commitment, especially at a time -- for most people -- of economic prosperity.

Ms. Seele: I think when we look at the issue of tobacco in this country, and what this country has done around the entire tobacco laws -- you cannot smoke in a building in America. Basically, if you are smoking you go outside and smoke your cigarettes. But look how much money was poured into making America a smoke-free country, and it has worked. But it took commitment on all levels. And now we're in the third decade of an epidemic that kills people looking for -- in two years, 1 billion people infected, and we still don't have that kind of commitment on all levels. And that is the essential fundamental problem of AIDS in the world today, particularly AIDS in America, first world. If we are in this situation in our first world, you can imagine that there is no infrastructure in third world. But we have not -- if we can change the consciousness around tobacco, we should be able to do the same thing around HIV, but the commitment is just not there.

Mr. Kramer: Well, we also had an amazing man running the FDA on the tobacco thing, called David Kessler, who went after them tooth and tongue -- the tobacco industry, to make this issue finally come to a head. But we don't have that person working for AIDS in the government.

Dr. Marlink: Again, that's the leadership issue. In looking back -- this is Marlink again -- on the past 10 years, if that's the subject -- the one thing that developing countries have taught me or others, again, on the leadership issue is that in certain countries where leaders have taken a stand ahead of the pack, things have happened, even with scant or little resources. In Uganda and in Senegal -- in different parts of the epidemic, Uganda being at the forefront and one of the worst parts of the epidemic early on, really still took on prevention efforts which have helped show in sheer numbers, a curbing of the epidemic. In Senegal, they've prevented what should have been a terrible epidemic from happening. So leadership can make a difference, because it was all dependent on people speaking out and taking an unpopular stand at the time.

Event Moderator: I'd like to remind everyone listening that this is an interactive audiocast, so you may submit questions or comments for our guests by typing into the question line and clicking submit. At that, I'll move on to the next question which is: In which direction do you think that this pandemic is moving, considering the fact that there are rumors of real solutions, and by the way, I am committed day in and day out to this illness.

Mr. Kramer: What rumors of solutions? I haven't heard any rumors of solutions. All I see are actual facts that it's getting worse -- that everything is worse and worse, and that the drugs aren't working, and that people are getting sick from the medicine, and that people are beginning to die again.  What rumors that there's going to be a solution? I haven't heard that at all. I have only heard doctors say that -- in fact, only recently there were major doctors saying that the virus will never be eliminated. Who's the dreamer who's hearing these rumors?

Dr. Marlink: The combination therapies, as Larry's been saying, are no solution. They --

Mr. Kramer:  How are you supposed to take those? This is Larry. If after only two years, the combination therapies are beginning to make people so sick and kill them, how are you supposed to take them for the rest of your life? Get real. 

Dr. Marlink: Well, I mean also in terms of no solution, in that they're basically, at best, holding back the virus within a person or holding it back in general. When you look at the numbers, when you look at AIDS deaths or the numbers of AIDS cases leveling off or decreasing in this country, you're really looking at that holding back the dam. It does not mean HIV infections are decreasing, and it does not mean someone living with HIV is not still living with HIV, so I appreciate the toxicities, and the problems, and the costs, and the complications of taking the medications, but we should also step back and realize that they're not a cure and they're not a solution. 

Event Moderator: At that, let's move on to the next question from the audience, which is: Dr. Marlink, any breakthroughs occur in the 90's with regard to better understanding the virus?

Dr. Marlink: This virus is perhaps the best understood organism on the face of the planet. We've understood that it's actually not one virus, but a group of epidemics, and the virus has different types and subtypes. We've understood with the medications or the result of that, that there are certain enzymes and parts along the life cycle which can be attacked, although we pay a high price in attacking those parts of the virus life cycle. We've learned more about the structure and function of different parts from the genetic structure on up of this virus and how it affects our immune system. It is still eluding us overall, and I'm not trying to give the impression that we know everything there is to know about this organism, but we have learned a lot. I think the mixture of the advances in biotechnology in the past three years of automated genetic sequencing -- the same type of advances that are pushing the human genome project forward and being able to decipher our DNA in a much more rapid and sophisticated way than we ever have before has helped us realize that we are not dealing with one virus. We're actually dealing with subtypes of HIV that are evolving under our noses. We didn't realize this several years ago, the fact that Southern Africa and all the way up to Ethiopia and across to India are affected by a subtype of HIV called subtype C, which, 10 years ago, we were not even aware was on the map but now infects more individuals worldwide than all the other subtypes of HIV combined. And it has again taught the lesson, unfortunately, the tragic lesson that we've underestimated this virus again. 

When we started this conversation, Larry brought up the fact that we've seemingly underestimated in numbers, but now the dire numbers that were predicted 10 years ago are coming to pass, and new dire numbers up to the hundreds of millions, if not billions, are being touted now. Scientifically, we know more about this virus than any other, but it's only teaching us that we have so much more to learn. 

Mr. Kramer: It hasn't been transmitted -- what we know into medicine therapies that seem to work. So every time you read in the paper "oh, this new wonderful thing has been discovered at such and such a place, and it's been tried out in mice," and the next thing you know, they try it out on a person. By the time it's tried out on a person, usually as time has passed, it doesn't work anymore anyway. 

Ms. Seele: And we also have not translated that into prevention. We still don't know how to really get people to behave differently to avoid HIV. We are still in a situation where we think that this is a homosexual disease. And that continues to drive the prevention issues, the people just -- well, you know, "I'm not gay so I can have unprotected sex." We have not done a good job on educating our country, our community, the world, about how you get this virus and how you don't get it. And I think this continues to be a problem. 

Dr. Marlink: Well, Pernessa -- this is Marlink again -- it's actually been a failure. We can all look at the fact that because new infections in young people, women, and especially communities of color, are not part of the leveling off that is usually thought of in the AIDS epidemic in the United States -- we have failed in prevention. I'm sitting here looking out the window at Boston Latin High School being dismissed and hundreds of kids -- actually, young adults, many probably sexually active or about to be -- over half of the infections in this country occur in people under 25, and they've continued to occur in people under 25. This is a young epidemic usually, and prevention is not working. 

Mr. Kramer: I was just on vacation and I was talking to a bunch of mothers of kids who were in high school, and we got around to talking about that kids were having sex much more than they ever have before, and that they were having it younger, and that girls now -- it's become -- I don't know what to call it. It's become acceptable and indeed interesting to girls to have oral intercourse with the boy and to swallow his semen without any kind of condom, and they think that this is safe. This is all news to me, but it sure is scary. 

Ms. Seele: Well, we know that today, the average age for becoming sexually active is 11 years old. It's been documented, and most people don't want to believe that because little Johnny and little Mary, they're my babies. But the fact is that children are becoming sexually active at 11 years old. And adults -- we the adults have really failed our children. We should not have an 18, 19, 20-year-old, born during the AIDS epidemic -- we shouldn't have an epidemic of AIDS in that age group.  These are our children that were born during the AIDS epidemic, and we've failed our children in terms of educating them properly. And that's -- again, it goes back to commitment. You can turn on the television, you can turn on the radio, and sex in the marketplace, but AIDS education continues not to be in the marketplace. Until we put AIDS education side by side like we put sex -- I'm in Times Square. I cannot walk one block in Times Square and not see some kind of half sex immediately. I can walk from here to Central Park and not see one AIDS education billboard. Something is wrong with that in a country that is being devastated by HIV. 


What is HIV? See Answer

Event Moderator: I'm going to slip in two prevention questions, and then you guys can continue. The first one is: We've reached a point where children are being born into the world of AIDS. For the rising generations, there is no before and after. How does this impact prevention efforts? The second question is: If prevention is the problem, why is the money not concentrated there?

Mr. Kramer: I would like to say that -- I'm going to be the devil's advocate here. I have felt from the very beginning -- since the very beginning -- that education and prevention were not going to work. That didn't mean that we should use all of our efforts to keep up the front to try, but people are people and sex is sex, and you're just not going to be able to stop it. And people are people. And that is why I have felt it was so important, at least for me, to concentrate all my energy on fighting for a cure, fighting for drugs. That was the way we were going to get this thing out of the world, more than prevention, more than education. We have to put the pressure on everybody to do the research, to the drug companies, the government, whatever. Indeed, we can look to a lot of victories in this area, but the fact that there are drugs at all within 10 or 12 years is a miracle that no other disease has ever achieved. They're just not good enough drugs. But that's all the more reason we shouldn't stop our energies. We've got to double --

Dr. Marlink: Larry -- this is Richard again. No one wants to get rid of sex and no one thinks we'll get rid of sex, hopefully, but it's -- again, safe sex and the prevention efforts which we're not touting as working, but at least it is the way to prevent exposure to HIV and to talk to your kids about --

Mr. Kramer: Oh, Richard, I'm not giving it as any argument about that.  If you go to the movies -- I went and saw this wonderful movie last night called "The Cider House Rules," it's fabulous. And you know, these kids are having sex, unprotected sex, in the movie --

Ms. Seele: And that's what I'm talking about. There is no commitment. There is no commitment to AIDS prevention. Why in this day and age do you have a movie coming out with kids having unprotected sex? And we do not have the commitment to do prevention. I think prevention can work. We've seen it work in communities. But we have to have -- the message has to go forth further than "Let's go out and have sex, I met you at three o'clock, I'm having sex with you at six o'clock." And I think that that message is always the message that we hear, not the message of safe sex or abstinence or wait until you are -- that you know a person's name, for heaven's sake, before you have sex with them. 

Mr. Kramer: Pernessa, they want us dead. I wish people in the affected communities would realize that, that most of our enemies who are in control of the money, the government, the press, the churches, whatever -- you name it. They don't care if black people, and faggots, and junkies, and people who -- they don't care that we die. They certainly don't care about Africa and the rest of the world. That's our biggest problem. You listen to these political candidates talking. There's not one of them who's come out and said anything miraculously humane about fighting this plague. Not a one of them. Not Gore, not Bradley, certainly not the Republicans. Anyway, enough said. 

Ms. Seele: Well, Larry, I would definitely agree that in looking at the history of racism in this country, the hatred, the deep-seated hatred that America has towards gay people and black people is truly evident on how we address HIV. I think that's why we have to continue -- continue to work. We're kind of working like we worked on something in the 1920's, because everything really goes back to how much your hatred, your racism -- you know what I mean, and how you feel about another human being. And I agree with you. I agree with you wholeheartedly that we are fighting a hatred battle when we are talking about HIV in the gay community and the black community. 

Mr. Kramer: And we haven't got the forces. We don't have -- you know, the gay community was going to have a march on Washington and the gay community itself self-destructed the march, so we can't even had the march on Washington. Where are all the black people? Why aren't they in revolt? Where is Africa? Where is the uprising? That's the only thing that people pay attention to. For a few years, we had ACT UP making -- destroying St. Patrick's, getting all kinds of arrests, and out there really fighting. That's when we made progress changing things. And when you become passive like we all are now, we get nothing. 

Ms. Seele: Well, I want to say that for the African-American community, I think that we are beginning to mobilize in a way that we've never mobilized before around HIV --

Mr. Kramer:  That's because of you and people like you that are 20 years into --

Ms. Seele: Exactly. It's 20 years, and I'm tired.

Mr. Kramer: And I'm tired too, and Rick's tired. 

Ms. Seele: But at least we can say that -- I know that when we started talking to the church 10 years ago, there were no churches. Today we have churches involved. Are there enough churches? No. But at least there is a force going on now, there's movement going on. But it's slow. And that's the problem. 

Dr. Marlink: Pernessa, what about -- our friend Mario Cooper talks about a Blacked-Up with a "B." I mean, is this really going to happen beyond some extra money from Congress, which is great. Is it really going to be a national movement? 

Ms. Seele: I doubt it. I doubt it. And I doubt it because -- Rick, the challenge that we have in the black community, it's like we are so divided among ourselves over the issue of AIDS. It's economic status, it's social status, it's those people -- and we all don't feel the impact of HIV, unlike when Larry came along, the gay community felt the impact of HIV. 

Mr. Kramer: And we were scared you-know-what-less. But nobody is anymore. 

Subscribe to MedicineNet's General Health Newsletter

By clicking Submit, I agree to the MedicineNet's Terms & Conditions & Privacy Policy and understand that I may opt out of MedicineNet's subscriptions at any time.

Ms. Seele: But something happened in your movement, Larry, that you were able to mobilize the gay community in a way --

Mr. Kramer: Yes, but something has happened now that has -- the movement is destroyed. I mean, we've got -- I can't get 20 people to go picket DuPont for putting this poison drug, Sustiva, on the market, or going to Abbott for putting on Norvir which has now been discovered to cause liver cancer in so many of the people who take it. I mean, we should be chaining ourselves to these drug companies, but it's the very -- but it's the very people who were the activists 10 years ago, these idiots in TAG, who are telling people that these are the drugs they should take. 

Ms. Seele: But you see, that's my point. You now have people who are doing well on drugs, and you  have people who are not doing well on drugs. You have people who can afford drugs, and you have people who can't afford drugs. You don't have a cohesive unity of -- you know, when back in segregation -- I grew up in the segregated south. We were all colored people, all Negroes who could not walk in the front of the building. So therefore we could mobilize because we all felt, each of us, pain

Mr. Kramer: You were all the same, right. 

Ms. Seele: You know, nobody could walk in the front of the Capitol building. Now, you can walk -- it's about how much money do you have to walk in this door? 

Mr. Kramer: You're so right. I --

Ms. Seele:  So therefore, we don't all feel the same pain, and that's the problem of mobilizing around AIDS today, we're not all in the same boat. 

Mr. Kramer: I said to a friend of mine, David Sanford, who's editor of the Wall Street Journal, who has AIDS, and who just feels so awful from all of these drugs, and I said "why don't you get out there and say I feel awful from all these drugs?" And he said "well, because I'm alive."

Ms. Seele: See. 

Event Moderator: I'm going to interrupt you now to move onto some more questions. We have a lot of them coming in from the audience right now. 

Mr. Kramer: They're too -- they're too namby-pamby, the questions. 

Event Moderator: This one is: How important is the search for a vaccine?

Mr. Kramer: Oh, please. Could we go to the next question?

Event Moderator: I can go to another one. Dr. Marlink, do you think that immunological control of the virus might be possible in the near future?

Dr. Marlink: Not in the near future, but it certainly -- something happens in the immune system -- the dance that the immune system do and the virus do together that implies that the virus is somehow under control -- and I put that in quotes -- for some length of time without medications, etc. So, does that lean us toward the possibility of immunologic control? Does that show that it might be possible? Yes. How to do it? I don't think we're that smart yet. 

Event Moderator: Our next question is: How can academics get researchers and policy makers to start looking at poverty and political economy, and not culture and psychology, in understanding risk behavior?

Mr. Kramer: We've been talking about that all along. I don't -- I don't know. I mean, if that person who asked that question just did his work and did what he wanted people to think about, and stopped passing the buck, then that's a start. Next question. 

Event Moderator: What's the good news? Is there any?

Mr. Kramer: No. 

Ms. Seele: Well, I think that -- I think that the good news is that, you know, on this conference call you have a Larry Kramer, you have a Richard Marlink, and a Pernessa Seele, and I think the AIDS epidemic has brought communities together like we would never have come together before. And we are learning how to work together. We are having dialogue and having frank conversation on how we are the same, our similarities, and our differences. And I think that the AIDS epidemic is really doing a great thing in terms of breaking down some cultural barriers in this country, including racism on some level. And I think that's a good thing. I think that's a very good thing. 

Mr. Kramer: The person who asked that question wants us to say yes, so that they can go and go on their merry way and not have to do anything, not have to fight, not have to write a check, not have to make a phone call.  And that's the problem with all of this. Everybody looks for faint hope in these crappy drugs that are out there thinking that they're going to get people through. What we're saying today is they're not, and there isn't any good news, and you've got to be scared again. And it's only fear that's going to get people off their duff. 

Dr. Marlink: Yes. As a side note of -- and this is not a good news point, but what we thought was going to be one of the good news stories of this past decade, that is, in 1994, the showing that AZT or one of the drugs Larry was talking about -- the first antiretroviral developed -- would block the virus from being transmitted from mothers to their infants. Now, we've even shown that lower dosing -- just giving to the mother for a shorter amount of time, and then recently, giving one dose of another drug to the mother and one dose to the baby, would dramatically reduce mother-to-child transmission -- would prevent half of all the pediatric HIV infections in the world. And this now costs just a few dollars and it's still not available, since 1994, in 90 percent of the world. 

Mr. Kramer: Why isn't everybody throwing bombs at Glaxo Wellcome, the manufacturer of AZT, a drug that was financed, again, entirely by American taxpayer money? And Glaxo charges a fortune for it and refuses to sell it to the third world of anything remotely resembling a price that they can afford. 

Dr. Marlink: Well, they did reduce their prices but they do -- the tragedy is beyond -- it includes the company, it includes costs, but it gets back to what we were talking about before. It's a real commitment to get programs going, to get the logistics, the training, it's not as easy as the pill, but the pill is still not available. It's not that I disagree, Larry, it's beyond the pill, but it's still only a few dollars. The pill now may cost --

Mr. Kramer: And only a few dollars is more than what these countries can afford. 

Dr. Marlink: But it's not more than you and I can afford. And that means $10 can prevent an infection of a baby in Africa. It will train a nurse, it will provide the medication, it will do the HIV testing and counseling, and that is -- 

Mr. Kramer:  So we should start an organization that sends money for the drugs for Africa, much as we did with such things as famine in the past?

Dr. Marlink: I totally agree. 

Ms. Seele: But I also think that we need to talk about what's not available for communities in this country, because in many communities in America, we are third world countries. There are places here that -- drug companies are not looking at places in Alabama or places in Florida, or places in upstate New York, if you will, because they can't pay for the drugs. 

Mr. Kramer: One of my medicines just came in, and it's gone up to $1200 for a two-month supply. Isn't that unbelievable, that my insurance company is going to pay for that? And 35-40 million people don't have insurance? 

Ms. Seele: Right here in these United States.

Event Moderator: Here's a question for Pernessa Seele: What's the The Balm in Gilead doing?

Mr. Kramer: A lot. A lot more than the person who asked that question. 

Ms. Seele: The Balm in Gilead, we work with the African-American church to get them to address HIV/AIDS. Why? Because 90 percent of African-Americans go to church. That's the way we organize in our community. In our community, when you look at the political activism, when you look at how we get people out to vote, it is through our churches. It has been that way since 1779, when the first African-American church denomination was founded. So, what we do at The Balm in Gilead, we develop programs, we develop AIDS education programs and trainings to get the churches to talk to their constituents, their congregations, their community, because when the word goes forth from the church, something happens. When you look at the stigma of AIDS, the stigma of AIDS comes directly from the religious community, whether you're talking about AIDS in America, AIDS in Africa, AIDS in China, AIDS globally. People don't want to get tested, people don't want to get treatment. People don't want get prevention because AIDS is a stigma. If we're going to attack AIDS, we're going to have to attack it from -- let's breakdown the stigma. And that comes from the religious community. So The Balm in Gilead, we focus solely on bringing the right effective message from the pulpit to the communities on HIV education. 

Mr. Kramer: If you want to listen to one of our great heroes, you just listen to her. Pernessa is an incredible force in this country. This idea for this organization was hers, and this notion of using the churches to pay attention in the communities that had not paid attention, is hers. And she goes out there and she fights like a tiger. She doesn't have enough money, the organization doesn't have enough money, it doesn't have nearly the support it should have. If you want to write a check, you want to do something, write it to The Balm in Gilead. What's your address, Pernessa?

Ms. Seele: 130 West 42nd Street, New York, New York, 10036. Thanks, Larry. 

Mr. Kramer: You're welcome. 

Dr. Marlink: She taught us here -- 10 years ago she came up and from then on I think we've been -- at Harvard University, have been trying to follow her and others leads, and if there anything we can do, she knows -- she just calls us. 

Event Moderator: Tell us about the Leading for Lives campaign, Dr. Marlink, that began over at Harvard. 

Dr. Marlink: Well, that's one of the things that Pernessa and Mario Cooper, and NMAC, and others got started in 1996, to again draw attention to exactly what Pernessa is talking about. Can we help facilitate, mobilize, knock on the head, leaders in communities of color to take on AIDS, to be leaders in AIDS, and can we help those that are already leaders and trying to struggle in trying to create programs and do the work that they needed. So that was called at the time, Leading for Life, and it's worked both in front of and behind the scenes to help facilitate organizations like The Balm in Gilead who are already in existence instead of creating a new organization, is to try to promote what they do and network what they do -- work both with and without the government. We have a briefing on Capitol Hill on January 15th for the Congressional staff; we'll see who shows up. And so it's an effort really started by leaders like Pernessa --

Ms. Seele: And Mario Cooper. 

Dr. Marlink: Right. We've basically taken our lead, and I think that's what people should do is let those that will lead and see what the rest of us can do to help. In our own areas of expertise, then we need to stand up as Larry Kramer said, everyday, Saturday, and Sunday, and work in our areas and take the maybe unpopular stance, but the right stance. 

Mr. Kramer: May, is there a facility that people who sign on to WebMD can direct questions to WebMD on a daily basis? Because I really would like everybody who's listening or tuning in to send an email to the executive of WebMD saying to please honor their promise and start the database -- the Treatment Data Project. 

Event Moderator: People can write to [email protected] 

Mr. Kramer: We desperately need information from people who are taking these drugs on how they are doing. The only way we can get that is if we have a massive database which goes through an Internet provider or a service provider like WebMD, which promised to do it publicly, made an announcement, and has not lived up to its promise. 

Event Moderator: And we're going to move to one last question before we wrap things up, which is: Dr. Marlink, do you support what is being said about the combination therapy not being effective to control HIV?

Dr. Marlink: I think I just did, that the combination antiretrovirals may help about 1/3 of people in the long run. About 1/3 -- it looked like they 1) can tolerate them, 2) can stick to the very difficult regime and logistics of taking them, and 3), afford them. So about 1/3 can take them, but there is still -- even if you're in that lucky third and hard-working third -- because it's difficult to do, it's still not a solution. It's holding back the virus from replicating and reproducing itself, and essentially holding back the water like a dam's holding back the water, and it's not a solid dam. It's probably temporary and not a long term solution.

Mr. Kramer: What do you think of what Dr. Stephen Miles at UCLA has been saying, that we're on the wrong course and that the viral load is really not the important thing to be spending all of our time trying to control, that it's the immune system, it's the T-cells that have got to be protected, and that all of these drugs that we're taking -- we're going down the wrong road? It won't be the first time, but that is really terrifying. 

Dr. Marlink: It's like shoring up -- to me it's similar to you've had a flood and the dam's broken or the river's overflowing, and you've put your sandbags there and it's still raining, and the water is still rising, and you think that's the solution.  You do need the sandbags, yes, no doubt, to block the rest of the flooding. You do need the sandbags. But I think what Steve is saying is that that's not the solution. I think he's saying the same thing, that it's not -- we shouldn't put all of our efforts into creating more sandbags. 

Mr. Kramer: I think it's very interesting that I am hearing about more and more patients who are simply stopping taking the medicine. They're just too uncomfortable. And that is -- I don't know what that is going to do. 

Event Moderator: At that, we've reached the end of our show. I'd like to thank Larry Kramer, Dr. Richard Marlink, and Pernessa Seele for taking the time to speak to us today. 

Thank you to everyone listening and participating in this discussion online. I hope you were able to learn, and I encourage you to take action.

Point your browser to  for more AIDS resources, including the latest news, message boards, chat rooms, and live events with leaders in the fight against AIDS.

Tune in on Tuesday, January 11 at 3 p.m. ET, 12 p.m. PT, for AIDS Hour on WebMD, when we'll be speaking with Edward Hooper, author of the new book, The River: A Journey to the Source of HIV and AIDS.

Thank you, everyone, and good-bye.

©1996-2005 WebMD Inc. All rights reserved.

Health Solutions From Our Sponsors