OCTOBER 15, 1993

GAY PEOPLE'S CHRONICLE

ACT UP meets 'AIDS czar' Christine Gebbie

On Monday October 4, ACT UP Cleveland held a meeting with Christine Gebbie, U.S. AIDS policy coordinator (the "AIDS czar”), in Cleveland. The duties and reporting structure of the position as created by President Clinton, and Gebbie's personal qualifications, had all come under fire from ACT UP nationally when the appointment was announced.

During the extensive interview, the AIDS policy coordinator responded to a number of issues. In this installment, Gebbie discusses the "single drug" trial of gp160; and the "McClintock Project," a Manhattan Project-style approach to curing AIDS, supported by ACT UP.

In addition to Gebbie, ACT UP Cleveland members Marcos Rivero and Joe Carroccio; and Elren Belton, who is active in the Leadership Coalition on AIDS, participated.

ACT UP: What is going on with the gp160 controversy, about MicroGeneSys wanting $10 million for their product if the [National Institutes of Health] conducts a multi-vaccine study.

Gebbie: Are you caught up on the fact that we've already gotten a House vote to reprogram the money and we're waiting for the Senate?... It passed the House on a voice vote last week, so now it takes Senate action. The White House is on record asking them to do it.

Now that you can see how corporate greed gets in the way of medical research, how do you feel about the McClintock project that would remove conflict of interest?

The gp160 thing takes place with congressional action. Where a corporation got congressional action.

For a specific product.

Yes, for a specific product and a particular study. I'm not quite sure how we cure Congress from doing what they do, no matter what we do so, let's set that aside. We do need to find a way to bring the corporate pharmaceutical interests, and the research interests, and the community activist interests, together around HIV research. I'm not sure the McClintock project, the way it's outlined, is the way to do it, but I'm absolutely convinced we need to do it a different way, and I'm going to be at the second version of the Madison meeting, as we try to move that along.

There are also some other meetings, with NHHS [National Health and Human Services] to look at the drug development process. I will probably have someone on my staff working on a special project around this, possibly a young man named Terry Beswick, who used to be with Project Inform. He's now with the Human Rights Campaign Fund, and they have offered to loan him to me for four months to work in this area, if it works out... It is an area of great concern to me, and I don't want to lose some of the good that corporate investment has done. We've gotten some drugs through corporate experimentation and development, but there has also been some interest in where corporate ownership of a patent, or the fact that a corporation couldn't extend the patent, has limited what they've done in research, and it's that kind of thing that we've got to work our way around with some changes in law, and changes in communication patterns.

Are you familiar with the term “jawboning," where the president calls industry heads down on the carpet and says, "Hey, what you're doing is wrong”? Is there any talk of the president doing anything like that with the pharmaceutical industry?

I think he might, if we had a project where we thought we needed to do that. I know some people thought that it might work with MicroGeneSys. If we had decided that that study should go forward, I think that might well be an approach we'd try that with. The problem is, it's the wrong study.

If it's a single-drug study it's the wrong study, but if you compared it to the gp120 vaccines, or a multi-vaccine study it would

be better scientific research.

A little better, but I tell you, talking to a lot of scientists that I've talked with, it would be even better to spend the $20 million on an early Phase study, that is more of a building block research, that the multivaccine study is still jumping ahead. And while it's a little bit better then gp160 alone, it would cost more than $20 million, and that is not a good investment. That's why I said, let's put all that money back into the basic research, but yes, if we had one company, for example MicroGeneSys holding out, and all the other drug companies were ready to come to the table and put their product up, I have no problem with using the power of the White House to be one way of saying, let's get going here, get with the program.

The other question would be, since we're talking about the power of the White House, wouldn't this be a good area for you to show the AIDS community what your power as AIDS policy coordinator can do?

Well, I think I already have. I believe it's the letter I wrote to Congress on White House stationery that got us moving, that got the House vote. There were people over there mumbling around about doing it, but they wanted to know if the administration would back them if they did it, and that my having sat with Defense, with HHS, talked to the activists on the phone. I talked to the New York chapter [of ACT UP] several times, I spoke with David Rogers at the New York Institute, to be sure I knew what the science was, to then write a letter to say, this is the good science. I think that's what made a difference.

What can we do to help?

Write to senators to concur on the House amendment on the gp160 study.

Belton: In every state. Our Senators are fairly receptive to the AIDS community here.

Then re-enforce them to talk to their colleagues who are going to be on the Defense conference committee to support the amendment on the gp160 study.

On the meeting that was held in Madison, Wisconsin in July, where the future of AIDS research was discussed, what was your opinion on the outcome of that meeting?

I think it's an excellent beginning. You may recall, I wasn't even officially on the job, and I was only there for one day of a two-day meeting, but I was very pleased. I know people were concerned that Project Inform, or ACT UP, would be yelling at everybody and the researchers would get huffy, and it would fall apart. None of that happened at all. The reports that I had about the first day of discussions around specific research projects were very positive. The common understanding about where studies of protease inhibitors needed to be prioritized and so on, felt very good to me. And the movement that second day, toward a common understanding about how we come together at a table felt very good to me. That's why I'm sorry it's taking so long to get the second meeting.

Which will be in November.

It will be in November and it's still on my calendar. I don't know if I'll be at every minute of it, but I'll be at as much of it as I possibly can.

What seems to be the biggest obstacle at this point as far as developing a project like McClintock? It seems to be the conflict of interest issue and scientists giving up their stock options.

I don't think so. I think the biggest obstacle is that in general, the scientific community doesn't feel we have the building blocks to be that targeted. That we need a lot more very basic science, and that we need three or four basic projects going simultaneously. That in fact we got where we are today because we leapfrogged into the anti-virals. Without studying the pathogenesis of AIDS.

Yes. And if we lock too soon into what people call a Manhattan or McClintock project, we'd be doing the same thing again.

Go chasing after something new, a virus or immune restorative, and miss that basis, and so I think we need to talk about basic science, which is a much fuzzier piece of research. How we target people there, and then build on that in a timely way, in the anti-viral, in the immune restorative, in the supportive therapies that we haven't been studying at all. Now, there are a lot of these things that are helping people live longer that nobody has been researching.

Like alternatives.

Yes, like alternatives that are helping people and we don't understand why, and then to understand the behavior pieces. Why is it some people do well on a research study, and other people fall off the regimen every third day. What are the behavioral pieces that make that go together, because that is a part of the puzzle which will also help us with prevention, so you're getting

my long answer as to why talking about it like it's a single, get-a-person-to-the-moon study, just doesn't work.

But finding the way to break out of the old pattern in which researchers and academia thought they were above anybody telling them what to do... somehow we all have to come to the table together, and say there is room for all of us here, . which is a huge social shift.

It's looking at the future of medicine in a whole different light, which would have far-reaching implications into other dis-

eases.

And very positive ones. I think we can get there if we're patient with one another. ✔

Next issue: Part Two of the interview covers needle exchange programs and the controversy about Gebbie's health department activities in Oregon and Washington state.

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