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