AIDS Decade in Review (cont.)

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 service@webmd.net.

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 my.webmd.com 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.



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