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Gay Men's Health Crisis
Larry Kramer and the Politics of AIDS Research

February 1, 1995
GMHC Treatment Issues 1995 Feb 1; 9(2): 4

Larry Kramer co-founded GMHC and founded ACT UP. In 1986, Kramer began publicly pressuring GMHC to start a treatment newsletter and hire Dr. Barry Gingell, a noted physician and PWA, as editor. Shortly thereafter, in 1987, Treatment Issues began publication with Barry Gingell as its first editor. Since that time, Kramer's AIDS activism has focused primarily on AIDS research and, as he describes it, "the fight for a cure." He maintains a wide network of contacts among AIDS researchers, physicians, activists, government officials and those in the media and has not hesitated to attack, often in bitter and personal terms, individuals and organizations (including GMHC) with whom he may disagree.

Larry Kramer is described in The Gay 100: A Ranking of the Most Influential Gay Men and Lesbians, Past and Present (Citadel Press, 1995) as, "Rude, opinionated, inconvenient, invaluable, and irreplaceable, he is the most influential gay man in America today. The organizations he helped found have become some of the most important institutions in contemporary gay America's struggle to survive. If the community does in fact survive, it will owe that survival in no little degree to Larry Kramer." Dave Gilden and David Gold of Treatment Issues spoke with Larry Kramer in his Manhattan apartment and got his views on the politics of AIDS research. Overall AIDS Research TI: Where do you think we are in terms of the AIDS research effort? KRAMER: It's hard to know because there's no one in charge and it seems to be worse under Clinton. He has been grotesquely and tragically useless on AIDS. In terms of AIDS research, we were actually better off under Bush. Everything seems more fractured and splintered. There's less communication than ever.

The Office of AIDS Research [OAR] has been an enormous disappointment. It's split whatever NIH effort was going on into different camps that don't seem to get along well. Fauci, Gallo, Paul and Broder -- nobody talks to anybody else.

The most interesting research is being done outside of the government at places like the Aaron Diamond Center, the Salk Institute, Dr. Cecil Fox's Molecular Histology Lab, and at various drug companies. All this has little to do with government. So one wonders what we get from the $13 billion a year that goes to the NIH. Did you know there's never been a cure for any major illness that has come out of the NIH? TI: What about William Paul [Director of the OAR]? KRAMER: Bill Paul is a nice man and a smart scientist, but he has no sense of urgency. He is a wimp. This would not have happened but for the lessening of ACT UP's energy.

TI: But before the OAR reforms no one at NIH was looking at how AIDS research dollars were being spent.

KRAMER: The OAR changes killed our only friend down there -- Tony Fauci [Director of NIAID, the NIH institute with the largest AIDS research program]. He invited us in. It was a courageous and generous act that allowed the activist community to get what power it does have.

TI: What about the Director of NIH, Harold Varmus? KRAMER: Harold Varmus, like William Paul, has been an enormous disappointment. He is not interested in AIDS and does not appear capable of making everybody sit down at the same table and talk -- of being the general.

TI: What are your current thoughts on Tony Fauci? KRAMER: Well, your publication has been harsh on Tony, and there are things to be harsh about. But emasculating Tony, which is what has happened because of the OAR reforms, resulted in us getting something worse. When we got rid of Dan Hoth [former assistant to Fauci and director of the Division of AIDS -- DAIDS] what did we get? Jack Killen [current Director of DAIDS].

TI: But Tony Fauci's job is to attract quality people to NIAID and oversee operations such as the ACTG [AIDS Clinical Trials Group], which is a mess.

KRAMER: Tony hasn't been a very good administrator, but he's a brilliant scientist. And it's hard to get anybody to work for the NIH because the salaries are so low and because the place is such a cesspool of mediocrity. Why has Tony become the lightning rod of all the anger? Why did nobody go after Sam Broder [the outgoing Director of the National Cancer Institute -- NCI]. Or Varmus? The same thing happened here in New York. We spent so much energy going after Ed Koch and never went after Cuomo, D'Amato or Moynihan. These people, in some instances, were more important than Ed Koch.

TI: What about Robert Gallo's work? KRAMER: Some very important work has come out of Gallo's laboratory at the NCI and we need him to continue. Two of the most important people in AIDS research, Bob Gallo and David Baltimore, have been crucified by Congressman John Dingel for exceedingly petty reasons. We've lost two of the smartest brains in AIDS research because some idiot Congressperson who doesn't know anything about humanity has killed them. David Baltimore should have been in charge of all AIDS research in this country.

TI: What about the AIDS Drug Development Task Force that was announced with great fanfare last year? KRAMER: It meets once every three months, which is shocking. A number of members would like it to meet every month. They've asked Kessler [FDA Commissioner David Kessler] to meet every month and he has refused. So I called David and he said there simply isn't enough stuff to push through for a monthly meeting, which is kind of scary. Secondly, he wants to get the Abbott protease [inhibitor] out fast and doesn't want to upset the apple cart. So let's see what he does with the Abbott compound. If the members themselves can't get the damn committee to meet every month, how can I do it? [But] Kessler is the least of our problems at this point.

Approving AIDS Drugs TI: So you think the protease inhibitors are ready for accelerated approval? KRAMER: Absolutely. Why aren't we fighting for the Abbott protease the way we fought to get aerosolized pentamidine approved? We fought so hard in the early days of ACT UP to get a bunch of lousy drugs released. Now, when there are decent drugs on the horizon, nobody is fighting for access. You're talking to someone who could make a good case that we don't need an NIH, an FDA or an ACTG. We know more about AZT and how it works from patients taking it than we have learned from a billion dollars' worth of trials. This is what makes me so angry with groups like TAG [Treatment Activist Group], which are advocating a return to a rigid system of drug approval that we spent so much time dismantling.

TI: Some would suggest that we don't know how to use these drugs or if they are beneficial.

KRAMER: Well, large simple trials may not give you the answer. Chemotherapies for cancer have been in existence for 40 years and still haven't produced consistent results. Doctors can learn more about how to use a drug from personal experience on their patients than from clinical trials that may take ten years.

TI: So, if a drug has anti-viral effect and a known toxicity profile it should be approved? KRAMER: Yes.

TI: But just because a drug is safe, doesn't mean that it works.

KRAMER: You'll find out soon enough. And "safe" is a very loaded word. Chemotherapy is not always safe. "Effective" is the better word. There are very few drugs that work across the board and do not have side effects in somebody.

TI: But if a person is taking a bunch of drugs we may not know whether one drug is useful or not.

KRAMER: Enough is known about the Abbott drug for it to be available right now, period. It is criminal to withhold that drug.

We are in desperate straits and we need drugs out there faster. Researchers who we all respect think that the Abbott protease is good, including David Ho [director of the Aaron Diamond Center]. I would rather listen to David Ho than to the 25 mediocre doctors who are going to do an ACTG trial that will take four years.

I have no faith in the drug delivery system in this country, as it presently stands. That includes the NIH, which is a cesspool of utter mediocrity, the ACTG which is $68 million down the toilet every year, and the FDA. There are cheaper and more efficient ways to collect data, such as using small quick trials and private physicians as data collection points.

TI: But what if the effects of the Abbott protease inhibitor as a single agent are only for three to six months? KRAMER: Well, so that's three or six more months than most people have. It's probably not the cure but it's the next step, at a time when AZT isn't working on a lot of people.

TI: Are you concerned about raising false hopes with the protease inhibitors? KRAMER: There's nothing wrong with hope that may not pan out. Hope keeps you alive. No hope, you slit your wrist. Both hope and panic can be useful and humane tools.

Overhauling AIDS Research TI: Are things going to get worse, in terms of AIDS research, under the Republican-controlled Congress? KRAMER: I don't think it makes any difference who's in office -- who's the President or who's running Congress, Republican or Democrat. It's taken me fifteen years to come to this dreadful conclusion. What people don't understand is that you have to change the system, but the system doesn't change. It is run by civil service bureaucrats and laws on the books since 1776. No one ever bothers to change the system of how research is done, grants are funded or people are hired.

TI: So how would you change the system? KRAMER: It will require a revolution and it's simply not going to happen. The more sensible question is, what can we do, that is possible, to make things go faster? Prevention education does not seem to work. Rates of HIV infection among young gay men continue to go up. That does not mean we should give up educating, but we must spend more time pressuring the system so that research moves faster. And if you want some suggestions I've got them.

TI: Go right ahead.

KRAMER: To begin with, the people who are important in AIDS research have to meet on a regular basis. The important ones in government, Fauci, Varmus, Paul, Kessler, Phil Lee [Assistant Secretary of Health], and Patsy Fleming [the new White House AIDS Coordinator] have to meet once a week and somebody has got to push them into establishing clear goals -- and meeting them.

These people, believe it or not, do not speak to each other on a regular basis. Everybody has their own little fiefdom and that's grotesque. If I'm running a large corporation that's going to be any good, all my department heads would have to meet with me on a regular basis and show results. All these people report to Bill Clinton and Donna "Do- Nothing" Shalala. So, the apparatus is there. Hopefully, Patsy Fleming will somehow bring this about. But I'm told she feels she can't step into AIDS research. If that's true, and I hope it isn't, then Patsy Fleming is useless.

Second, combinations of anti-viral drugs must be studied more quickly and aggressively.

Third, why isn't anybody doing any major research on monkeys? This has been advocated by Dr. Cecil Fox. When it was put to Bill Paul and Tony Fauci both said, "Oh, yes, we're rushing to work on monkeys." Well, nothing has started on the monkeys. Why isn't combination therapy being studied on the monkeys? Or immune therapies like cyclosporine? It's just ludicrous. There's been a monkey model for this illness for how long? Why aren't GMHC and other groups providing pressure in this area? This is probably the biggest oversight going right now.

Fourth, research on monkeys must be done by virologists, not by veterinarians. Evidently, part of the problem is that a lot of the monkey work is being controlled by veterinarians who do entirely different kinds of experiments than virologists. They do not understand AIDS the way a virologist does.

Fifth, why isn't more work being done with infected babies? This is an ideal chance to use early intervention. How much earlier can an intervention be than in an infected baby? Here again is a population of patients that we're overlooking.

Sixth, we need to get more drugs into the pipeline. Drug companies must be convinced to screen their chemical libraries. I'm grateful to David Ho for explaining this to me. The large companies, which have libraries with more than 100,000 compounds, should be screening their compounds against assays to study anti-HIV effect. This is one reason there are so few drugs in the pipeline. Why aren't we pressuring companies to do this? Some kind of apparatus has to be set up whereby companies are encouraged to do this, through tax credits or whatever. And, again, you come up against the terrible lack of somebody in charge who can convince the drug companies to do this work.

Seventh, we need to make better use of data from the AIDS cohort studies. People who have data from the cohort studies, like those in San Francisco or at the New York Blood Center, have refused to share this data with other researchers. It is simply tragic that the New York Blood Center doesn't automatically provide these samples when a reputable scientist comes along and needs access to them. And no reason is given. These studies were funded by the government. What kind of attitude are we dealing with here? Eighth, we still don't know enough about pathogenesis of this illness -- how does the virus get into a person, step by step? What type of immune response do we need for a vaccine? Why aren't we making greater use of monkeys for this type of basic research? Ninth, it's wrong that the smartest researchers are forced to spend 30 to 40 percent of their time running after money. There's got to be some emergency mechanism set up so that the brightest scientists are allowed to have more free time to research. The dreadful thing about the current system is that it rewards the mediocre and punishes the smart. We're never going to get any kind of cure that way. Again, this is an area where private foundations should step in more. The Howard Hughes Institute, which has a gigantic amount of money, should take even more of a lead in this.

Tenth, we've got to figure out how to attract promising researchers into AIDS. In this respect, the NIH can learn from the drug companies. Corporate people set goals, pay people a decent salary and give them decent benefits to achieve those goals. If those goals aren't reached, then they are out of a job. That's why the most exciting AIDS research is taking place outside of government.

Now,these things are not impossible to do. The fact that they are not being done brings us back to the same problem -- nobody is in charge. There's no person with guts, persuasive powers, administrative skills and scientific knowledge who is in charge. Fauci, Varmus, Phil Lee, these are people who are not particularly strong at being leaders.

TI: Who, in your mind, is this kind of leader? KRAMER: We tried Lowell Weicker, Lee Iacocca, Roy Vagelos and Admiral Watkins. The world is not short of these kinds of people. Major corporations around the world are run by them. These people are identifiable, and they're not controversial. Admiral Watkins did an amazing job on the AIDS Commission with a bunch of people who hated each other. So did the late David Rogers. Why is this useless President refusing to cast a net for someone like this? The Community Response TI: Why has the community been ineffective in the area of AIDS research? KRAMER: I have come to the terrible and sad realization that I don't know why people don't fight when their lives are threatened. We don't and we haven't. A few of us have died fighting. There's been an effort, but certainly not commensurate with the power and money that this community has at its disposal. I will obviously go to my death not knowing why.

TI: You've criticized major AIDS service organizations such as GMHC and APLA [AIDS Project Los Angeles] for not devoting enough resources to treatment advocacy.

KRAMER: I have, and I continue to do so. It is an abdication of these organizations' primary responsibility, which is to fight for the lives of their clients. The leaders of all of these organizations need to be more visible in the area of fighting for AIDS research.

TI: But the core work of these organizations is to provide direct services to people with HIV, most of whom are in desperate need of such services.

KRAMER: Why does it have to be either/or, direct services or fighting for a cure? GMHC and APLA get a lot of money. These organizations were not started just to be one thing! TI: But some suggest that it's easy for Larry Kramer, who lives on Fifth Avenue and East Hampton, to say we shouldn't spend so much money on direct services.

KRAMER: I've never said that at all. I've said that you should spend more money and energy fighting the system and fighting for AIDS research. These organizations rarely seem to confront the system.

TI: What about our organizations in Washington, such as AIDS Action Council? KRAMER: Who are they? AIDS Action Council has been like so many other AIDS organizations -- a waste of money. It has been run by people who are not very good and has achieved very little. It was set up initially by Paul Popham and myself to be a Washington presence separate from GMHC because in those days GMHC was looked upon as hogging everything and other AIDS organizations around the country resented it. So we attempted to set up an organization that would represent everybody. But it turned out to be mostly funded by GMHC -- and still is, as far as I know. The fact that GMHC continues to give money to it is something that I've never understood. GMHC would be better off funding its own Washington lobbyist. [Editor's note: Derek Hodel has recently been hired by GMHC in a newly created position, Director of Federal Affairs.] It's a never-ending pattern with our Washington organizations. We send people to DC to fight the system, they get invited to lots of lunches and become part of the system.

TI: So how do you avoid that? KRAMER: You avoid it by asking for a return on your money. If GMHC is funding AIDS Action $200,000 a year, you say, "I want to know what I'm getting for my $200,000 a year." You set goals and demand results, like in any corporate environment. And quite frankly, if that were the case, you would have stopped funding AIDS Action long ago.

TI: How do we get more government monies allocated for AIDS research? KRAMER: Everybody fights for more money, but the real issue is making sure the money is well spent. You can get more money for the ACTG, Bill Paul, and for an awful lot of inferior entities but it's not going to solve the problem. The problem is seeing that the money is spent wisely and given to smart people so that things move faster. Again I use the example of the monkeys. Do you know that because of the bureaucracy and red tape, it takes two years to requisition a monkey at the NIH? So it's irrelevant that the money is there. You can't get the monkey because of red tape. So AIDS Action, Patsy Fleming, the OAR, GMHC or APLA must all exert pressure to eliminate these delays.

The "right wing" and the "religious right" never give up. They know that they are going to have to fight until the day they die. And there's no wavering. We give up very quickly. We must get a different mind-set on this, that you just simply cannot stop fighting.

TI: So, what needs to be done? ACT UP is kind of burned out.

KRAMER: I don't know whether what ACT UP does works anymore. You can make the system work by raising our voices and reaching increasing numbers of people. For a while ACT UP was able to do that. We're weak now because our voices are not heard. So organizations like GMHC, which have the money to mount campaigns and fund lobbyists, must be more aggressive. And other tactics have to come in. We should begin a series of protests against the media. The New York Times still does not have an AIDS reporter investigating this issue like they would a USAir crash.

TI: The Wall Street Journal just transferred their AIDS reporter out of AIDS.

KRAMER: That's appalling. The important media sources don't write about AIDS. McNeil/Lehrer and Nightline never do AIDS stories. I've long advocated nonspecific underground guerrilla activities. This is a war, a plague, and we're treating it as if it's not. On a community-response level, we are exceedingly passive and docile. I get particularly angry when we have resources that we don't use. By that I mean boards of directors. I have gone after GMHC in print any number of times because you have powerful people on your Board, people who have connections with powerful people. Why are these contacts not utilized? I was overwhelmed with anger when I recently discovered that the President of the Board of Harvard AIDS Institute is Maurice Templesman, who was Jackie Kennedy's friend. I called Max Essex [Director of the Harvard AIDS Institute] and asked if he ever requested Templesman to speak out or do a benefit. He said, "No, maybe I should ask him to do something." It's that kind of attitude. Scientists are wimps when it comes to politics.

You have the same kind of important people on your Board. And you don't use them. The corporate world works because companies have powerful boards. No gay organization ever uses its board effectively.

Treatment Decisions TI: How do you make your own treatment decisions? KRAMER: It's hard and it's not comfortable because doctors don't agree with each other. And that's very confusing for everyone. But people have access to more information than they think. It's vitally important that everybody who's HIV- positive take charge of his or her illness powerfully. And that is not impossible to do. It just requires a lot of work. It requires reading publications like your own excellent one, which I tell everybody to subscribe because you put out stuff that nobody else does. And reading John James' newsletter [AIDS Treatment News] and the stuff that comes from PWA groups, as well as talking to doctors and other patients who are plugged in. It's like researching a term paper and going to all the sources you possibly can and then making your own decision. I know it's not easy.

It's not easy with any serious illness, particularly where there are different points of view. So you have to learn how to read your own blood work, ask your own questions and realize that your doctor, whoever he or she may be, is not going to be on top of your case with the thoroughness that is required. You have to see when things go up and down on the medicine you take, how you feel from it and what it does to your blood over a period of time. Find a doctor you feel comfortable with. Be assertive and tell your doctor everything. But it's not easy.

TI: Tell us about your plans, aside from activism.

KRAMER: Stephen Gendin recently said to me, "It's all your fault because you gave us such hope. You said there was cure." Well, I still believe there's a cure. And I've never lost hope. That helps keep me going.

But I have this perennial conflict between being an activist and wanting to be an artist. And I'm embarked on a very long novel. I also have a lover for the first time in a long time and that's made me exceedingly happy. We bought a house in the country and I want to live there with him, write my book and play house. But I feel guilty that I'm not out there being what everybody wants me to be. Like most of us, I don't have that kind of energy anymore.

I outlined ten things that would help the system go faster. Yes, it would be wonderful if there was a leader to appear who could push all these things. But, there are things we all can do. We have to keep pushing and pressuring a research system which moves far too slow.