What’s Wrong with the AIDS Movement? Why We’re Losing the Fight to Stop AIDS


Sean Strub
Sean Strub

On World AIDS Day, Sean Strub, the respected AIDS activist and founder of POZ magazine, delivered a speech in San Francisco at the National AIDS Memorial Grove in Golden Gate Park. With no punches pulled, Sean sharply critiques the AIDS establishment and the gay establishment and challenges both to return to the basic principles on which the AIDS fight was originally led — by the HIV-positive themselves. The institutional AIDS and gay communities both need to take a hard look at themselves, and hear Sean’s challenge to return to first principles. In the Bush era, we are losing the fight to stop AIDS, deliver care to the infected, and prevent rising new infection rates. Sean explains why, and offers a cogent way out. I couldn’t agree more with his searing diagnosis. READ THIS SPEECH! — Doug Ireland

As we stand here on World AIDS Day, in this magnificent setting, our theme, and my assigned topic, is “Embrace Life.” But I may not address it in quite the way the organizers intended. I find it hard to Embrace Life when . . .

A judge in Mississippi, this past summer, barred three children from living with their aunt — simply because she has HIV.

I find it hard to Embrace Life when, just two weeks ago, the FDA succumbs to religious conservatives and announces plans to require warning labels on condoms, casting doubts on their effectiveness in preventing disease.

And how can I “Embrace Life” when last month, Gary Carriker, a gay man living with HIV in Georgia, was sentenced to several years in prison. His crime? Not disclosing he had HIV to sexual partners. None have sero-converted. But that didn’t matter. Nor does it matter, under Georgia and other states’ laws, whether condoms were used. Or how risky or safe their activities were.

These horrific examples of stigma and fear-mongering tell us much about where we are today in fighting AIDS in the United States. Even while there have been important medical advances and expanded access to treatment around the world, people with HIV now face political opposition more extreme than anything we’ve seen since the start of the epidemic. This is not just rhetoric. Many of our hardest-won victories, from science-based prevention to health-care access to basic human rights, have, with the rise of George Bush and his evangelical constituency, been rolled back. Five years ago, for example, it was unthinkable that America’s war on AIDS would become a war on condoms. Today it hardly makes headlines.

Today, people with HIV are more stigmatized and less empowered. But ironically, we formed our best strategy to respond to these threats more than two decades ago. And we have forgotten it. I want to review the roots of our movement, explain how our amnesia has caused this crisis, then propose how, I hope, we can start moving forward again.

Bobbi Campbell and His Lover
Bobbi Campbell with His Lover

Way back in 1983, a small, courageous group of guys with AIDS — including San Francisco’s Bobbi Campbell — met at a gay health conference in Denver and wrote what has come to be known as the Denver Principles. Do you remember the Denver Principles? Written at a time of great social fear and political hysteria, they spelled out the rights and responsibilities of people with AIDS. Back then, the average survival between diagnosis and death was mere months, although many died within weeks or days of a diagnosis. Despite that terrible prognosis, these men asserted an identity for those who had the disease. I quote:

We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term that implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”

They demanded the right to “be involved at every level of decision-making and, specifically, to serve on the boards of directors of provider organizations.”

They also articulated responsibilities, including that “people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.”

Michael Callen
Michael Callen

It was a powerful and radical concept. In the history of humankind, never before had sufferers of a disease united to assert their rights. When Bobbi, Michael Callen, and the other guys stormed the podium at a gay health conference, to read their manifesto, they got a ten-minute standing ovation. Ginny Apuzzo, the conference co-chair, said “there wasn’t a dry eye in the house.” Those present knew history was being made at that moment. The Denver Principles expressed a fundamental truth: to be successful, the fight against the epidemic must include the people who have the disease as equal partners in the battle. That model empowered our community to create a massive AIDS service delivery system, from scratch, in a remarkably short period of time under difficult circumstances.

Do you remember the horrific stigma so many of us suffered during those earliest years? When those who hated and feared us sought to shame us into invisibility? To even quarantine and incarcerate us? When they would not work at our side, want us to live in their house, touch their dishes, use their towels, or hold their children, it was our empowered voice that educated them. When the nation’s political leadership failed to address the emerging crisis — and was content to watch us die — our collective empowerment gave us the political muscle to force change. When we focused on empowering people with HIV, that’s when we were truly embracing life. But today, our focus on empowerment has become a slogan rather than a system. So our political muscle has atrophied, paving the way for greater stigmatization and disempowerment.

Campaign to End AIDS, DCA few weeks ago, I joined the Campaign to End AIDS events in Washington, DC. It was organized mainly by people with HIV and two groups — Housing Works and the National Association of People with HIV. Both those groups’ boards of directors comprise a majority living with HIV. The C2EA events — rallies, a march, civil disobedience actions and lobbying on Capitol Hill — were inspiring. But attendance was shamefully sparse because most major AIDS service organizations did not provide organizational or promotional support, let alone bodies. In the 1980s, many major AIDS service organizations, like AIDS Project Los Angeles, Gay Men’s Health Crisis, the Chicago and San Francisco AIDS Foundations, and others, would have been central to organizing such an event. Back then, their groups’ board members and executive directors were getting arrested in civil disobedience actions in front of the Reagan’s White House, which, believe me, wasn’t any worse than the one we’ve got now.

So why have our leading AIDS organizations mostly abandoned grassroots activism? One big reason is that, back in the 1980s, most AIDS service groups were controlled by people with HIV and by those who were terrified they might have HIV. That gave those agencies a sense of urgency, anger, and, yes, desperation that is absent today. The stakes felt higher to the board members themselves. But the crisis is not absent. In fact, it is more urgent and desperate than ever. Worsened by a presidential theocracy that is pushing its morality on America. Anti-science, Anti-condom. Abstinence-only. Criminalizing people with HIV. None of this is about promoting public health.

It is about their campaign against sex. Bush’s implied message is that only immoral people get HIV.

That’s because, to them, the only “proper” sex, the only “good” sex, the only “permissible” sex, is the sex that only two heterosexually married people can have.

Did you read a few weeks ago about a new vaccine to fight the cervical cancers caused by the Human papilloma virus (HPV)? It’s 100 percent effective when given to girls before they are sexually active. But the abstinence-only crowd opposes it because it would “send the wrong message.” In their Orwellian logic, letting women die, whether from HIV or cervical cancer, sends a better message, one they think will frighten people into the Bush-defined morality.

Same with condoms. To them, condoms are dangerous because they protect against unwanted pregnancy and harmful infections and therefore decrease the fear of sex that makes abstinence possible. That is why — bizarrely — we must warn our youth against them. As for HIV and those of us who have it, we are being used in the same way — as a weapon in their war on sex.

But let’s be frank. We are also to blame. It is not all George Bush’s fault. We have allowed our AIDS service organizations and our community leadership to become politically neutered and institutionalized to the point where the voice of people with HIV has often become absent, or relegated to tokenism.

We have disempowered ourselves by retreating from one of the most important Denver Principles. The one calling on our organizations to include people with HIV in all levels of decision-making — and I quote — “specifically to serve on the boards of directors” of those organizations. The culture of these boards has changed dramatically since they were first founded. Originally, they were comprised almost entirely of people who were sick or those who thought they might be. When the HIV antibody test arrived, it forever divided the gay male world between those who were positive and those who were negative. But we also lost the unifying uncertainty of fear and, over time, the presence of people with HIV on these boards has lessened and lessened. I’m not saying fear is our savior. But unity is, and the Denver Principles can help us regain it.

AIDS has become a huge industry that has made careers, fame, and fortune for many. But the rush over the corpses and voices of people with HIV in the pursuit of power, institutionalization, and fundraising has been disgraceful. Part of the reason is because of the lessened presence on these boards of people who were fighting for their own lives. We did some research at POZ last week to see how people with HIV were represented on the boards of major AIDS organizations today. What we found is disturbing: GMHC: 13 on the board, only 2 HIV+; God’s Love: 26/1; APLA: 20/1; Chicago AIDS Foundation: 40/2; Whitman Walker: 42/4; SF AIDS Foundation: 16/6; amfAR: 25/1. And even of these few positive people on these boards, it should be noted that they are all chosen by HIV negative majorities and, in many cases, the people with HIV chosen to serve on boards are also employees of other AIDS-related agencies, both factors which can sometimes cloud or compromise priorities.

These groups were founded to confront and challenge a status quo that was killing us. It still is, but the organizations we created to lead that charge have abdicated their responsibility to confront it. What’s more, they have cast us out — us people with HIV — from their board rooms, and that has been costly indeed. As HIV positive representation on these boards declined, ASOs began to “tone it down” to qualify for as much money as they could grab from government sources. Advocacy has taken a back seat. Prevention programs with integrity and results became secondary to those that could get funded. Complicated and controversial, but important, issues — like fighting criminalization — have been abandoned.

AIDS service organizations have forgotten that part of their service they were founded to provide, perhaps one of the most important services they can provide today, is advocacy, activism, and leadership in the communities where the epidemic is hitting hardest The philosophy behind the Denver Principles pioneered an extraordinary model of partnership between the agencies and the communities they serve. But from a pioneering model of partnership, many agencies are now reverting to the Denver Principles’ dreaded “victim” model. Is that what we want?

I’m not saying big AIDS service groups’ funding fears, if they take an activist stance, are entirely irrational. But their timidity, paranoia, and, in some cases, absolute cowardice is costing our movement integrity and lives. It extends the epidemic. It DISEMPOWERS US. It allows George Bush and his Republican right-wing moralists to define the debate and dictate AIDS policy. And, the parallel trends — fewer HIV board members, on the one hand, and increasing timidity in the activist arena, on the other — is damning.

But the Republicans are not the only problem in Washington. The Democrats haven’t exactly demonstrated awe-inspiring courage. And this, too, I blame on the silencing of people with HIV. During the last presidential election, the Kerry campaign encouraged AIDS activists to keep a low profile. So we didn’t cloud their quest for the Soccer Moms and Nascar Dads. John Kerry’s campaign had no prominent openly-HIV positive campaign official. Not one. There was no dedicated HIV/AIDS community liaison or issues person. There was no “Friend of John” with AIDS visibly advising Kerry, as Bob Hattoy did for Bill Clinton. The DNC and the Kerry campaign were ashamed of us. And we felt it.

And how about the Human Rights Campaign — the largest gay rights organization in the country? It grew fat in the 1980s and ’90s on the donations of people wanting to fight AIDS. But today HRC has relegated AIDS to a part-time priority. It’s one of several issues a single HRC lobbyist handles. With their vast nationwide network, imagine how much more powerful our Campaign to End AIDS lobbying on Capitol Hill could have been if they had gotten behind it?

Perhaps worst of all in Washington is the self-proclaimed “national voice on AIDS,” the AIDS Action Council, a lobbying and advocacy group funded by the major AIDS service organizations. Shortly after they were founded, AIDS Action Council led the effort to raise AIDS issues in the 1988 presidential race, even holding press conferences in Iowa during their caucuses. But in the 2004 presidential race, they refused to endorse a non-partisan voter registration effort — AIDSVote — designed to empower people with HIV.

That effort, like the Campaign to End AIDS, was also led by people with HIV and organizations dominated by people with HIV. Think about that. The self-proclaimed “National Voice on AIDS” would not even lend its name — let alone financial or organizational assistance — to help positive people participate in the process. They were simply too cozy with or afraid of the Bush administration. They did participate in fundraising events for a Pharma front group fighting the use of generic drugs in Africa and in events “celebrating” — their word — Bush’s second inaugural and Republican electoral successes.

I fear I may sound like I’m singling out one or two organizations or individuals. I’m not. These examples are symptoms of the broader problem. We, as a community, have minimized the voices of people with HIV and largely abandoned the Denver Principles mandate to fight the epidemic in partnership with people who have the disease. I want to say a particular word to the Executive Directors and Board members who may cringe or turn defensive or even angry at this criticism. I beg you to listen and hear what I am saying. I appreciate your work. I honor your work. I am alive, in part, because of your work. But if you recommit yourself and your agencies to the Denver Principles, you will become more effective in your work. Bring people with HIV into your organization’s decision-making — at all levels — and we can together reverse the disturbing twin trends of increasing stigmatization and decreasing empowerment.

I am sometimes told that the problem lies with people with HIV. That we must get more involved. But for positive people to be involved as equals, rather than just as tokens, we need the commitment of our HIV negative allies. They must help guarantee us a seat at the table. Help guarantee we have the skills and training appropriate to actually contribute something. Many, many, people with HIV have the will and ability to serve on boards and provide leadership, if given the forum, support, and training. Greater empowerment of positive people means less stigma. Fewer HIV infections. Better health outcomes. With renewed vigor — and a recommitment to the Denver Principles — we could fight the Bush theocracy’s murderous policies, the criminalization statutes, and the lackadaisical community leadership. That’s my message.

I want to leave you today with a modest challenge. Let’s urge all AIDS service organizations to adopt a plan mandating that 1/2 of their board members be people with HIV, including clients of their agencies. Housing Works is a huge agency — $40 million per year budget — and its by-laws mandate that at least one-third of its board members be HIV positive clients, but they also provide the training and support for those people with HIV to serve effectively. It isn’t just about the numbers, but also about providing that training and support to create leadership amongst the formerly dispossessed.

I’m not suggesting a timetable; some organizations could do this quickly, others might require several years. But it’s a worthy and essential goal. This is the time of year when many of us make charitable gifts to AIDS organizations. I urge you to be generous, but I also urge you to add a note to your check. Ask about HIV positive board representation and their plans for increasing it. That will help get the attention this issue needs.

In the darkest days of the epidemic, when we were all frightened, when we were all suffering, when we were all angry, we knew what to do and we did it. The Denver Principles are the Magna Carta of AIDS activism, our Declaration of Independence, Constitution and Bill of Rights rolled into one. Returning to that original vision, heeding its clarion call and empowering positive people as equal partners, is our only hope for renewed life. Lets embrace it.

Sean Strub is the founder and publisher of POZ magazine, a publication for people with HIV or AIDS. This speech was first published in Direland, Doug Ireland’s blog.