Bob Hattoy is one of America's most famous AIDS poster boys, courtesy of Presidential candidate Bill Clinton's invitation to speak to the nation at the 1992 Democratic Convention. Together with fellow PWA Elizabeth Glaser, who also spoke at the Convention, and PWA Mary Fisher, who gave a similar speech at the Republican Convention, Hattoy earned a permanent footnote in the nation's political history.
But today, Glaser is dead. Fisher is relatively quiet, raising her children. And Hattoy, now a White House staff liaison to the Interior Department, is angry and ashamed that the Clinton administration hasn't delivered on its promises. But he still loves Bill and Hillary Clinton and still believes in them, even if their staff and appointees have let him -- and the AIDS community -- down.
And when Hattoy gets angry, the President pays attention. "I was sitting at home, watching 'Your Daughter Dresses Like A "Ho" Makeover Day' on Ricki Lake when the phone rings. It's Betty, the President's secretary, and she tells me the President wants to speak to me. I think she's kidding, but Bill gets on the phone and says, 'Bob, my friend, I understand you're frustrated.'
"'Frustrated?' I told him. 'I am tired of being blamed as a problem. I am not the problem. I speak out about AIDS and your staff blames me as the problem. AIDS is the problem.' And then I gave it to him for about 25 minutes, letting him know that there is a significant disconnect between what he personally believes about AIDS, where his administration is on AIDS and where the AIDS community thinks he is on AIDS.
This conversation occurred on the eve of the December 6 White House AIDS Conference, billed as a forum for Clinton to hear community voices and raise the public's AIDS awareness. Hattoy told Clinton that the President needed to open up the Conference and make it more inclusive of those who are actually on the frontlines of the epidemic, to let the people involved ask questions, to really give himself the opportunity to hear what people are feeling, saying and doing about AIDS.
Hattoy then told Clinton that of the six PWAs on the election team whom Clinton knew personally, five are dead: Patrick Lippert, Pedro Zamora, Pam Shaw, Bruce Decker and Elizabeth Glaser.
"I'm the only one living and I feel like I've got a responsibility to them, and the nation, to keep the pressure on for real action. The President didn't know some of these people had died, and was, I think, affected by the news," Hattoy told me.
"My feeling is that Clinton is far more willing to do much more on AIDS, but his political advisors won't let him. Our job is to keep the pressure up, to make his exertion of leadership on AIDS not just the right thing to do, but the easiest thing, politically, for him to do. The straight, white boys who run the White House are terrified of AIDS and they can't separate AIDS issues from gay and lesbian issues. Because of the gays in the military debacle, they think anything gay-related is a loser for them, politically.
"Can you believe, they actually told me I wouldn't be in the same room as Clinton during the AIDS Conference because 'there aren't enough chairs.' That's when I went ballistic and told the staff that I was going to speak to the President whether they let me or not. They realized they were going to have to deal with the press when I tell them that Elizabeth is dead and I don't know why I'm not in the room. The more I thought about it, the angrier I got. I called George Stephanapoulos, who agreed my exclusion was bullshit. He told me he would check it out. Then I went home, turned on Ricki Lake and the phone rang."
The organizing of the White House conference was one of the most cynical manifestations of the Clinton administration's AIDS legacy. Run by political operatives rather than policy personnel, the conference was, from the beginning, an exercise in re-election strategizing, not the launching pad for presidential action it was billed to be.
The President's AIDS Commission, led by Los Angeles physician and Democratic fundraiser R. Scott Hitt, is chock-full of Clinton campaign contributors and old hands from Democratic party politics. Virtually all of them are well-intentioned and a number are among the most respected AIDS advocates in the nation.
But as a body, they have so far functioned as little more than a Clinton campaign cheerleading squad.
One member of the Commission, attorney Robert Vogel, called me from his office in Chicago, telling me that I was hurting PWAs because of my criticism of Clinton. Other members of the AIDS Commission, as well as key Clinton fundraisers in the gay community, have said similar things.
Criticism certainly wasn't tolerated at the Conference itself. NAMES Project Quilt founder Cleve Jones was one of the select 175 people invited to participate. But Jones almost didn't attend because of what he termed a "thought police" mentality among organizers. "They assigned us to one of the seven breakout groups but wouldn't even tell us which one until the day of the conference. How could anyone adequately prepare?
As it turned out, Jones was assigned to the prevention subgroup. "That was fine, since I wanted to advocate for needle-exchange programs. The group was great and we agreed, using in the strongest language possible, that needle-exchange programs were the prevention priority. But when the report came out, as recorded by the pre-appointed secretary from the Commission, supposedly summarizing our views, the language was incredibly watered down, to the point where needle exchange was just one on a long list of appropriate prevention measures. That wasn't the sense of our group. We believed -- and expressed -- the view that needle-exchange programs were one step the President could take immediately that would save lives immediately."
Jones was scheduled to speak at a protest press conference organized by a coalition of public and private AIDS groups, including POZ. Held in Lafayette Park, across the street from the White House, a protest speaker would have to leave the Conference. Jones became livid that White House personnel told him "flat out" that he wouldn't be allowed back in to the Conference if he attended the protest.
Jones' story of subtle intimidation is echoed by the experience of a number of others, including me:
I was told by Richard Socarides, the White House liaison to the Department of Labor who was involved in selecting the participants for the Conference, that my views were too controversial for me to be invited. POZ was, in fact, repeatedly turned down for press credentials. Finally, less than a week before the event, the White House chose to make one pass available to POZ with the caveat that we not ask the President any questions (see Bobbing with Bill).
Bob Hattoy's fury, which led to the President's Ricki Lake-interrupting phone call, was fueled in part by an explicit threat he received from a Conference organizer that if he spoke at the protest press conference, he would be fired.
Then there's what happened to Mario Cooper, a longtime Democratic party stalwart, manager of the 1992 Democratic Convention and former board chair of AIDS Action Council, the principal lobbying voice for AIDS issues on Capitol Hill.
After two months of not returning Cooper's calls, White House liaison to the lesbian and gay community Marcia Scott (one of the key staffers on the conference) called to assuage Cooper over his concerns that the President was not being served well by the poor work of the Conference planning staff.
Cooper was particularly upset that, according to Scott, "political calculus" wouldn't allow the Clinton administration to have a serious discussion about or implementation of needle-exchange programs.
Needle-exchange programs -- whose effectiveness has been recognized privately by senior policymakers such as David Satcher, head of the Centers for Disease Control and Prevention (CDC), Phil Lee, assistant secretary for Health and Human Services (HHS), AIDS Policy Coordinator Patsy Fleming and leading activists across the nation -- have been shown to dramatically reduce HIV transmission rates.
Moreover, needle exchange is absolutely fundamental to getting the epidemic under control in communities of color. Cooper, who is African-American, was furious that the President would not even consider such programs. "How can they have an AIDS policy with any integrity without advocating and implementing needle exchange?" he asks.
The Presidential actions Clinton actually announced at the Conference were merely a series of new committees and task forces to issue yet more recommendations. He reiterated his pledge to veto the most extreme GOP Medicaid cuts, but made no commitment to protect that program -- much less Medicare or welfare, on which many PWAs depend -- from the bulk of the proposed dismantlement in benefits.
Clinton failed to even utter the words "needle exchange," but that omission was minor compared to HHS Secretary Donna Shalala's nerve in claiming to the press that "controversy over [needle-exchange] research" prevented taking any action on such programs. The CDC -- overseen by Shalala -- sponsored one of the three studies that proved decisively that needle exchange prevents transmission without promoting drug use, which is the legal criterion established for the administration to lift the ban on using federal funds for that purpose.
Jane Silver, director of public policy of the American Foundation for AIDS Research (AmFAR), was also angry with Shalala's comments. "We need to figure out how to remove prescription and paraphernalia barriers. To cloud the debate by questioning the research is really dishonest," she says.
Treatment Action Group founder Peter Staley said he was appalled at what Shalala said. "She's trying to rewrite scientific reality," Staley says. "To say there isn't scientific consensus on needle exchange is a lie. They shouldn't try to fool the world by questioning the science, which only jeopardizes the chance for local funding -- which is what we must rely on since the administration won't extend their political capital. Shalala only undercut our main alternative to federal funding. It was a really stupid thing to do."
The fact is, any actions the White House does take on anything AIDS-related, including needle-exchange programs (see the POZ-endorsed recommendations on p. 31), are likely to be the result of the community pressure, protests, sometimes obnoxious voices and relentless activism. They are unlikely to be the result of lobbying by apologists, access-seekers, White House dinner guests and inside players who have sold out their community in favor of their careers.
All of the so-called AIDS activists inside and outside of the administration should know that their work on Clinton's re-election, and indeed their role in the history of the epidemic, will ultimately be judged on what actions Clinton takes. A conference is not action. And we're still dying.