AIDS Treatment News #162, November 6, 1992
John S. James

ATN: What would a good presentation to a presidential transition team look like?

TS: From a substantive standpoint, you need a fully expert and politically savvy document, one that all of the major leaders of the AIDS community have participated in; you need a consensus document from the community. The recommendations must be so well done and thoroughly researched that they are unassailable. If you ever give people information they can't trust, you're in big trouble; at this level of politics, you must give extremely accurate and useful information.

The document must be very specific. If you think that NIH should change how it does business, for example, you would want to tell how the changes should be set up, who would be in charge, what the components of the research objectives should be, what the budget would look like, etc. If it required a legislative component, you would spell that out as well (which Congressional committees the legislation would go through, etc.)

I would also recommend having a dossier on potential personnel, and the jobs that would be ideal for them.

ATN: Most of those I have interviewed don't want to discuss people yet.

TS: That is unfortunate. For one thing, there is going to be an AIDS policy coordinator ("AIDS czar").

ATN: There is talk about this being two persons, one in the White House and one in HHS (Dept. of Health and Human Services).

TS: What is most important to understand is what Bill Clinton thinks of this issue. Clinton wants somebody in the White House. I imagine this person will be in charge on these issues, and not share responsibility with someone at HHS, but oversee responsibility for all AIDS issues. This is not just an HHS role; the AIDS czar at the White House is also going to be looking into issues like mandatory testing of Job Corps applicants, and the defense department. For example, the recent controversy over the $20 million dollars appropriated specifically to study the gp 160 vaccine raises huge issues over how well we're coordinating the research on a Federal level. $20 million to one drug because of a lobbyist. [Note: Sheridan had represented Genentech in opposing the earmarking of that money for studying a particular kind of vaccine. Many others have agreed with this position; for background, see "Lobbying for an AIDS Trial," Science, October 23, 1992, pages 536-539.]

Clinton wants somebody in the White House to be in charge. The politics is, what does Bill Clinton intend? Do we agree with his commitment to this? I think we do. Then the issue is what can we do to use this position and this commitment to the best possible advantage for people with HIV.

The first level of a good (transition) document and presentation is to understand what the politics is giving you, and then take advantage of those things. In social work, there's an old saying that says start where the client is. In this case the client is Bill Clinton, and we need to know where he is. I think we do know, that he's with us by and large. He knows what he's doing, and is willing to do what we think is good to do, but we need to be coordinated in our approach.

We should not have multiple and conflicting recommendations going into the transition team. If the National Commission wants to coordinate this, that's not a bad idea. But these decisions need to be made now.

Also, we should be coordinated with, but not necessarily the same as, what the gay and lesbian community is doing in getting gay and lesbian people appointed to positions in the new administration.

ATN: This kind of thinking has been lacking. In the last few months, when a Clinton victory became possible, many people started saying, "Oh -- we better start working out what we want."

TS: The onus of responsibility here, in taking advantage of any change of political leadership, is on the shoulders of those in the AIDS community who claim leadership. Our inability to coordinate our efforts, to better present substantive information, and to have consensus on recommendations, will hurt us. We have to agree with each other before we can expect the President of the United States and the whole administration to agree with us. But on the big picture, we have had difficulty allowing people to lead.

ATN: I'm hearing wide agreement on the need for consensus if we are going to have influence in the transition. But to get that, people are staying with generalities.

TS: That reflects our politics, our inability to have tough conversations with each other, to sit and work out consensus. That's not simple. But if we can't do it, we have lost the opportunity. If we don't know what we want, how are we expecting to tell the United States government? If you put out platitudes, if you don't take the opportunity to talk about people who would be good, if you can't put away personal ego, vendetta, jealousy, then we're in the wrong epidemic.

ATN: It might help to outline what you did in the transition in 1988. TS: In 1988 we got the national leadership of NORA (National Organizations Responding to AIDS) together, and we asked for substantial input from experts in the research community on the NIH part of it. We identified all key staff members and worked with them closely. In November 1988 we scheduled a meeting with the director of the transition team for Bush, we met with all the people who had any influence in the transition on health and social services issues of AIDS. Bush himself happened to come in on this conversation, and sat for a few minutes and discussed what our recommendations were. We were the first ones there, we had our document ready. We knew there would be a new president, and whoever it was, we were going to say the same things to them.

ATN: What went wrong in the Bush administration? Why wasn't that early momentum sustained, at least as far as us being able to express what we wanted?

TS: We were good at expressing it. The Bush administration had the largest distance I had ever seen between policy and politics. George Bush will do anything politically; he will talk to anyone, say anything, he is incredibly "out there" in conversations with people. He would come into the room with AIDS activists and talk about the issues, and his hopes for doing better, being compassionate.

But after that was over, there was never any serious presidential leadership. That's what it takes. It will take a president to say to the heads of the agencies, to the AIDS czar, "This is what I want done." That's what George Bush personally was never capable of doing. He was not capable of saying out loud that this was an issue of importance to him. And that message got across to everyone loud and clear.

If we still have Bush after the election, then there's a lot that needs to be done in terms of pressure points, and serious work with the Congress and the president. But if Bush wins this election, I think it's clear that he'll perceive his win to be that right-wing coalition; what he will be forced to do is to set things up for Dan Quayle in 1996, and that doesn't bode well for us at all. I think we will have a worse, more entrenched, more resistant presidency. With no threat to re-election, I think George Bush, having sold his soul already, will simply pay the rest of the tab. The possibility for changes with the re- election of a president is very limited -- only a shuffling of people within the agencies and the cabinet.

ATN: If Clinton wins, one issue is whether the AIDS czar will have to be an M. D.

TS: I don't believe the AIDS czar needs to be an M. D. He or she will probably need a scientific advisor, probably an M. D. The central criterion for the AIDS czar job is a personal relationship and respect with the president of the United States. That is what will get the job done. If people are not working together, that AIDS czar has to be able to go to the president directly and get results. Otherwise what we will have is NAPO (National AIDS Program Office) transferred to the White House. We don't need that. What we don't need is another level of bureaucracy.

We do need political and policy sophistication to get some very important work done. The AIDS community has the opportunity now to lay out the blueprint for that substantive work in the transition process. But doing so requires substantive and political work internally.

ATN: One concern is that we clearly need more coordination, including across institute boundaries at the NIH. But NIH has a strong tradition of independence of the institutes. And the scientists like the investigator-initiated free-form grants, as undirective an approach as possible. The scientific community is in a position to drag its feet and hurt things no matter what the push is from the top. How do we avoid that?

TS: We need to recognize that the U. S. Public Health Service, and therefore the National Institutes of Health, is a government agency. They are responsible to serve people, taxpayers in the U. S. What they do scientifically is not appropriate for political manipulation. But what they do with the money they spend is something they should be held accountable for. We cross those two lines all the time. Accountability is different than manipulation. Politics is about accountability. NIH gets its money through Congress; that's politics. They're accountable to Congress for what they spend and do.

But when Congress says spend $20 million for gp 160 (a particular kind of vaccine), that's wrong, that's manipulation of science using a political process. These are two different things. But it is naive of scientists to say they don't want politics interfering with their work. They should work for a private research entity and not the U. S. government if this is their major concern.

ATN: That can be a hard distinction to make.

TS: It shouldn't be. Government agencies are paid for by the taxpayers. We have the right in a democracy to expect them to do things on our behalf. Reasonable expectations and accountability should be clearly understood by government scientists.

ATN: But if it boils down to who's in charge, then how do you leave the gp 160 to scientific judgment, and still have political accountability, that the public wants improved treatments?

TS: The public wants improved treatments, and there are 11 vaccines that have been produced by private-sector initiative, and here's $20 million to figure out what works. But to say here's $20 million for one drug because the company has a lobbyist, that's manipulation. There's a certain level at which politics can and should ask for accountability; but there is a fine line between legitimate accountability and micro management, political interference and manipulation. The NIH wouldn't exist without politics; but we have to be very careful about how far anyone goes politically to manipulate what it does. There is clearly a distinction (between accountability and manipulation). Clinton has already set a tone, that we can do better, and our institutions can be more accountable for their work, and should be more responsive to the needs of people. That's a tone that gets set only at the presidential level.

Another lesson of the gp 160 incident is that we will need a much more vigilant advocacy effort, to find out about such problems earlier. To be good politically, you have to be able to get things done affirmatively; but you also need to know what's going on so that you can protect defensively when necessary.

ATN: How would you summarize what we must do for the transition?

TS: You need good substance, very specific, very well researched. You need good people to recommend for key jobs. And you need to do good politics to get that presentation seen, talked about, and acted on.

ATN: One 64-dollar question. Who in the AIDS community would you see as taking the lead in this? The National Commission just had layoffs.

TS: The National Commission may be appropriate. They just got an appropriation of over a million dollars; they have the money to do it. I can't think of anything more important for them to do. You don't need legions of people here; you need a community that wants to work together, and you need leaders that can build consensus, and somebody that understands politics. It's not that big a deal.

Maybe a foundation could hire someone, a neutral party to come in and broker these matters. It could be a firm, or a single person with respect and credibility. But the time to do it has on some level already passed. This is an immediate priority, and if it's not done well, it could put us five steps behind where we could be. If we get Bill Clinton and yet lose the ability to take dramatic steps because we didn't do our homework well, then somebody is indictable to people with HIV. This opportunity is gold, we've never had it before in this epidemic. George Bush was Ronald Reagan in another body; we didn't have the mindset, leadership, public statements. Now we have these wonderful tools to use -- but for little gain if we let them lie around and we don't build.

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