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Turning Remembrance into Action

"We must make people everywhere understand that the AIDS crisis is not over; that this is not about a few foreign countries, far away. This is a threat to an entire generation, that it is a threat to an entire civilization..."

April 21, 2010
The Denver Principles Empowerment Index
by Sean Strub

POZ founder Sean Strub delivered the keynote speech at the opening of the 5th anniversary commemoration in Washington, DC, of the Campaign to End AIDS (C2EA). The speech details his plan to measure HIV/AIDS groups against the ideals of self-empowerment in the Denver Principles. Below is the full text of his speech, which was delivered on April 19, 2010.

For those of you who don’t know me, I’ve been HIV positive all of my adult life. Like so many others, I acquired the virus when I was a young person, back in 1979 or 1980. At one time I weighed about thirty pounds less than I weigh now, I was covered with Kaposi’s sarcoma lesions and was very sick. I’m somebody who was fortunate enough to have access to and respond well to combination therapy when it became available in 1996. I’m probably healthier today than at anytime in my adult life.

Today I work with the Center for HIV Law and Policy on a campaign to combat HIV criminalization, and I’m also involved with the North American chapter of the Global Network of People Living with HIV and AIDS.

I’ve been asked to talk about the Denver Principles and their relevance today. The first question is, Why do we revisit the Denver Principles? It’s very simple, they’re the foundation of the People with HIV Self-Empowerment Movement. They show us how earlier activism influences our struggle today and what we can learn from that experience.

The Denver Principles are also the foundation of building a grass roots movement, one led by people with HIV, into a powerful voice. They also give us an opportunity to participate in the broader global movement towards the Greater Involvement of People Living with HIV and AIDS– greater and meaningful involvement, sometimes called GIPA.

Self-empowerment is what enables us to demand resources from government for treatment, care and prevention. Self-empowerment is what gives us the authority to speak to complex ethical considerations with research and treatment; like pre-exposure prophylaxis, the proposal to give HIV meds to those who are HIV negative but believed to be at high risk of acquiring HIV; or the “test and treat” proposals that we’ve been hearing so much about lately, that propose to test everybody and put virtually all of those who test positive on treatment, whether they need it or not.

With “test and treat” we’re asking or recommending to people with high CD4 counts, again, for whom there is no demonstrated benefit, to go on lifetime treatment, to participate in an experiment, for a presumed “community benefit” to prevent the spread of HIV rather than individual benefit. We don’t know whether above 500 CD4-cells it makes sense to start treatment or not. But “test and treat” advocates want to put those people on treatment, despite the absence of conclusive evidence that it will benefit them and with a very significant chance that it could harm them substantially.

Self-empowerment enables us to fight stigma, discrimination and criminalization, and most important of all self-empowerment helps us to live longer and healthier lives. I am alive because of self-empowerment. I am alive because of the Denver Principles.

The History of the Denver Principles

The Denver Principles were created in Denver, Colorado in 1983. It was the Fifth Annual Gay and Lesbian Health Conference, and it was the first national gathering of people with AIDS to organize and strategize politically and empower themselves; there had been some local activism in New York and San Francisco and elsewhere, but there had never been an occasion where people with AIDS came from around the country and got together and said, “We’ve got to organize as people with AIDS.”

Twelve or thirteen people gathered at the conference in Denver, they couldn’t afford to pay their way there; their tickets were bought by some other people with AIDS who had resources and some people who supported them. They didn’t come representing organizations; they were just people who were struggling to survive, struggling to make sense of an epidemic that had so profoundly stigmatized them. They were very ill and the political and cultural environment was terrifying, including talk of quarantine. It was a very frightening time.

They met in a hotel room and wrote a powerful manifesto we know today as the Denver Principles, I refer to it as the manifesto that launched a movement. This manifesto was inspired by the Women’s Health Movement, and it was inspired by traditional healing systems in communities all over the world, drawing on the collective wisdom of a community, not just experts imposing their wisdom on a community.

There is plenty to be learned both ways. We need experts and I don’t diminish the importance of experts, but we need to listen to ourselves, and we need to listen to each other’s experiences, because there is so much for us to learn and to share with others from that. In writing this document, they argued and debated about what was important, what they needed to say. And so they wrote a manifesto that outlined the rights and responsibilities of people with AIDS and guidelines for health care providers and others.

This was profoundly historic. It was the first time, the very first time in the history of humanity, when people who shared a disease organized and asserted the right to their voice, to a place at the table, when decisions were being made affecting their lives.

Before that, people who were ill were on the outside, they had no voice, and they certainly had not organized politically to assert the right to that voice. The Denver Principles manifesto is the Bill of Rights, The Declaration of Independence, The Constitution, The Magna Carta all rolled into one, not just for people with AIDS, not just for people with HIV, but for people who are dependent on a health care system, for people who struggle with life threatening illnesses.

In the scope of history, I am confident that a hundred years from now that the birth of the people with AIDS empowerment movement, starting from that hotel room in Denver with this document, and running right this room today—because we are the representation, we are the heirs to that, those of us sitting here today—will be seen as a profoundly, profoundly important event.

After that manifesto was written, it led to the founding of hundreds of community-based organizations. Most of our early AIDS organizations were started by people who had AIDS, people who thought they might have AIDS and their very closest friends and loved ones. That’s where they came from.

The ideas in the Denver Principles spread outside the U.S. In 1986 in Ottawa, Canada, at a World Health Organization conference, they issued something called The Ottawa Charter for Health Promotion. It specifically references this Denver Principles’ model of empowering people to improve their health. In 1994 The Paris Declaration that UNAIDS organized, and I think forty-seven countries signed it, including the United States, specifically referenced The Denver Principles. Inspired by the Denver Principles, the Paris Declaration defined GIPA, the Greater Involvement of People with AIDS.

The Denver Principles document begins with a very important sentence. The sentence is, “We condemn attempts to label us as victims, which implies defeat. We are only occasionally patients, which implies passivity, helplessness, and dependence upon the care of others. We are people with AIDS.”

Near the end of the conference the group who wrote this manifesto stormed the stage without invitation. They took the microphone, they all stood there behind a banner that read ‘Fighting for our Lives,’ and they read their manifesto to the conference attendees. The room went totally silent, and then, according to press reports at the time, the crowd came to their feet, many were weeping and began to applaud. For 15 minutes the guys who wrote the Denver Principles got a standing ovation. The people in that room knew that history was being made at that moment, and today, 27 years later, we are the continuation of that history.

Let me just break for a moment, is there a board member or a member of the staff from the National Association of People with AIDS here? [silence] Is there a board member of a member of the staff from the American Foundation for AIDS Research here? [silence] Is there a board member of a staff member from AIDS Action Council here, the lobby group in Washington? [silence]

Is my point clear?

[Audience responds loudly, “yes”]

The Denver Principles first established the right to define ourselves. We rejected other people’s labels of victim or patient. We demanded that we be treated as whole persons, with a respect for sexual diversity. We asserted our right to participate, and specifically this is in the Denver Principles document—to serve on the boards of directors of provider organizations. The Denver Principles’ recognized the ethical responsibility to inform partners of one’s health status, of things that could potentially endanger another partner. And that’s important because there is a difference between an ethical responsibility which also depends greatly on a person’s ability to disclose safely. The Denver Principles asserted our right to as full and satisfying a sexual and emotional lives as anyone, and it demanded that we get a full explanation of treatment and risks, and the right to choose or refuse any treatment modality.

So the question is what is the relevance of this document written in 1983 when the epidemic, in some ways, was very different to today?

The Relevance of the Denver Principles Today

Last year I made myself unpopular at a briefing the Kaiser Foundation held on a big survey they conducted. They had all sorts of media present, and one of their findings, they claimed, was that there was evidence that stigma may be lessening. They based that finding on their survey results that asked, ‘How do you feel about somebody with HIV working in a restaurant and preparing your food, or caring for your children,” or whatever. And they were comparing those responses from today to 10 or 12 years ago and the numbers were better, people are not as afraid of working with someone with HIV or having them prepare food as they once were. They said this is evidence that the stigma is lessening.

I stood up and I said, ‘What your results are evidence of is that there is less fear of contagion. Stigma is about much more than fear of contagion. Stigma is about pre-judgment! [applause] Stigma is about marginalization! [applause] Then, just to make sure I would never get invited back [Laughter], I said, ‘The next time you want to know about the experience of stigma for people with HIV you could start by asking them.’ [Loud Applause]

So why else is the Denver Principles document relevant today? Well the most extreme manifestation of stigma is when government sanctions stigma. We know the Jim Crow laws, we know apartheid, we know that when the government enforces discrimination that this is the most extreme manifestation of stigma. When we see how the law treats people with HIV differently from people with other viruses, when the law treats our sexual behaviors differently from others, we see stigmatization. The HIV criminalization statues are the most extreme manifestation of AIDS-related stigma. If anybody talks to you about doing something about stigma and they are not talking about repealing HIV criminalization statures, then you tell them their conversation is hollow. We won’t effectively fight stigma by buying billboards or ads on the sides of a buses and then continue to persecute and prosecute people with HIV under the law.

So why else is the Denver Principles document relevant today? There was a time when most of the AIDS organizations in the country had boards of directors that were entirely or mostly people with HIV, or people who thought they might have HIV. Indeed many of the largest organizations were founded by people who were virtually all HIV positive. A few years ago, on World AIDS Day, I spoke in San Francisco at the National AIDS Memorial Grove. I talked specifically about this issue of representation on the boards of directors of provider organizations.

In their wisdom, the people with AIDS who wrote the Denver Principles specifically included a provision that noted the importance of and our right to serve on the boards of directors of provider organizations. So before I gave that talk in San Francisco, I checked with some agencies and asked how many positive people are on their boards. Some just said, “Oh, we wouldn’t disclose that information.’ Some of them said, “Well, there’s one, or there’s two.” A number of them, including some very large groups, said they had no one at all with HIV on their board of directors. At other major agencies the representation that once had been the agency’s founding energy and board and what drove the agency’s growth had been reduced to only a small number, five or ten percent of their board. Very often that was a person who already had other obligations that potentially posed a conflict, like they worked for another AIDS agency across town. We need people who are HIV-positive to work in the epidemic, perhaps most importantly in the delivery of services, so that is something I support strongly. But we also need the independent voices who can come to a board meeting and just speak the truth about what the real priorities are, independent of worrying whether their AIDS-related employer might agree or not.

Participation on the boards of directors of provider organizations has declined to where it’s very nominal or token. Too often, where there are HIV-positive people, there is not the commitment on these boards of directors to provide them the training and tools necessary to maximize their effectiveness as board members. They’ll sometimes find somebody who will be a compliant HIV-positive person so they can check that box off, ‘Oh, we’ve got somebody positive on our board’, without making the commitment to ensuring that person’s meaningful participation.

The Denver Principles’ further relevance today is found in comparing the empowerment model that started these agencies initially, where the philosophy and work was peer to peer, it was people with HIV, their friends, their loved ones, people who thought they might be HIV helping others with HIV. It was an empowered service delivery model.

Over time the system of service delivery has strayed farther and farther away from that initial model to the more traditional ‘benefactor/victim’ model, where you get what we give you and you should feel lucky to have that. Another reason the Denver Principles is relevant today involves some of the new prevention and treatment strategies that present such serious ethical concerns, like pre-exposure prophylaxis and the test and treat strategies that I mentioned. All of these things are why it is so important that we revisit the Denver Principles and use them as a foundation and guide for our work today.

So part of my mission has been to educate people about this document and to share copies of it, and to urge you to take it back to your homes, to your agencies, to your friends, to your support groups, and share the empowerment message of this document, because when we organize and assert our voice we have an incredible authority, an inalienable right to participate and to be heard. We cannot be ignored because we are the people who have the disease, we are the people who will thrive or suffer, survive or die depending on how the epidemic is managed. There will be others who can try and co-opt us, but when we are working together we will not be ignored.

A Denver Principles Empowerment Index

One of the projects that I’m working on and welcome other people’s ideas and input on is to translate the Denver Principles document into an accountable measure where we can look at service providers. We are starting with non-profit organizations providing AIDS services (there are lots of other places we could and eventually will go, including doctors, government agencies, different places). How do we measure how consistent their organization and their service delivery is with these ideals of self-empowerment, with these Denver Principal ideals? We’re trying to come up with quantifiable measures in different categories, not just to beat them up and just rant and rave, but to provide measures of and encouragement towards incremental progress. There are lots of people in these agencies who want to integrate empowerment into their service delivery but don’t know how. I met with one director of a big AIDS service agency in the South. He’s been around a long time and knew all about the Denver Principles. He said, “Sean, look, you know me,” he said, ‘I love the idea of the Denver Principles, but I’m running an agency and I’ll tell you we do a crappy job of using the Denver Principles into our work here,’ he says, ‘what we need is help, we need best practices, we need to learn what has worked elsewhere and how we can use that here at our agency.” So that’s something else this empowerment index can do is it can identify best practices and things that work and share them with others.

So with the Denver Principles Empowerment Index, we’re looking at four categories in which we’ll develop these measures. One is in the agency’s governance and transparency, one of the examples I cite often is Housing Works, as evidence of an agency that can grow large and can integrate empowerment principles. I’m not saying Housing Works is perfect, I don’t think they would say that they’re perfect. But I’ll tell you something important that relates to their success. Their by-laws require that one-third of Housing Works’ board is elected by its clients and the staff and volunteers have representation on the board of directors as well. That alone is fundamentally different from almost every other major AIDS service provider in the entire country.

In addition to the governance structure, we’ll look at transparency—are the minutes of the board meetings put on the web site, are clients and the public welcome to come to board meetings?

We’ll also look at how they develop their programs and policies; how are clients, how is the community they served involved in those processes? Is it just experts and staff hidden away in a room coming out with a document, without involving clients and community, and saying, ‘This is our policy?’

Then we’ll consider how they deliver services. I’ll again use Housing Works as an example. Everyone knows that Housing Works has managed to retain a political identity and activist identity even as it grew large. Part of the reason has to do with the philosophy behind the organization. They believe that one cannot be empowered around one’s health care in this country, in this day and age, unless one is also empowered within the political system to access that health care.

And “empowered within the political system” has range from just being informed to participating in demonstrations to showing up here at this conference, to writing a letter to the editor, to testifying at a hearing—but it’s about participating. And so Housing Works builds that into how they work with their clients and measures staff performance based on their ability to create that engagement with their clients.

The empowerment index will also enable the community to create its own measures, to rate agencies, programs, providers. There are often factors that greatly influence our ability to access care that aren’t adequately considered by service providers. We know that if you go to an agency and you’ve got three different appointments, they sometimes make them on three different days, and you’ve got to arrange childcare on three different days and transportation on three different days, and take three different days off of work. If the agency could coordinate those appointments for the same day, it would be vastly more efficient and enable more of us to get the care we need.

We know that when we go to an agency for service and the waiting room for clients is like a waiting room at a prison where you’re on steel benches and the staff is behind bulletproof glass and metal doors, that isn’t exactly welcoming. It exacerbates a divide between clients and staff. I can tell you that didn’t exist in AIDS 25 years ago. It’s a new development in AIDS.

So there are lots of measures that we can come up with and the idea is to put this Denver Principles Index on-line so not only will there be the objective measures of looking at their board and this and that and responses from the agencies, which we will then have to lobby them to get them to participate in it, but also ratings from the community, any of us can go on and talk about our experience there or identify other measures that we think are important.

Another category for the empowerment index is treatment education. How an agency first of all develops its policies around treatment, who they recommend or don’t recommend for treatment is important. I don’t believe in one size fits all treatment strategies—agencies that have one treatment protocol for everybody, or simply manage clients based on numbers on a lab report. Well why do we need to show up if they’re doing it from a recipe; we could just send them our blood! Many of us survived because in the early days of the epidemic we could only learn from each other because we were the experts.

Well, we are still the experts, yet how are agencies using our experience today, do they listen to us or do they just tell us? From the beginning of the epidemic we’ve been the guinea pigs for new drugs. We’re the ones who first discovered many side effects, like facial wasting and said, ‘Hey something’s going on here, the Crixbelly, buffalo hump, broken fractures, broken hips, heart attacks, heart problems, kidney failure. And almost every one of those side effects were first responded to by the drug companies and government officials with “Oh, that is anecdotal” as a way of dismissing or diminishing our experience. [Audience members say, ‘Yes.’]

Well ‘anecdotal’ saved my life. We continue to be the canaries in the pharmaceutical coal mine. We know what these things are doing to us before they know. So those of us who are providing treatment to us, they need to listen to us, they need to collect data from us and learn from our experience and send that information upstream to regulators, to researchers, to pharma.

And so with that I’m going to close and take questions, but I just have to tell you I am so proud to be here with you, those of us in this room today, as we are the heirs to that group that met in that hotel room in Denver. And as beleaguered and as frustrating and as difficult as it is, as lonely as it sometimes feels, history is going to look back on us carrying the torch of hope and empowerment through to another generation, to another time. That is an awesome responsibility, but I am proud to share it with you.

Thank you.

[Loud Applause]

September 22, 2008

Renewing the Denver Principles
by Sean Strub.

In 1983, 25 years ago this past summer, a small group of people with AIDS met at a gay-health conference in Denver, Colorado, and wrote a document now known as the Denver Principles.

Written at a time of great social fear and political hysteria, the Denver Principles spells out the rights and responsibilities of people with AIDS.

Back then, the average survival between diagnosis and death was mere months; many died within weeks or days. Despite that terrible prognosis, this handful of people with AIDS 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, from shaping government programs to involvement in prevention campaigns to meaningful roles on staff and in the governance of organizations providing services to us and in response to the epidemic.

It was a powerful and radical concept. In the history of humankind, never before had sufferers of a disease united to assert their rights in this way.

Near the end of the health conference, they stormed the podium to read their manifesto under a banner that read, “Fighting For Our Lives.” They got a ten-minute standing ovation. The conference cochair said, “There wasn’t a dry eye in the house.” Those present knew history was being made at that moment.

Indeed it was, as their revolutionary document profoundly influenced the development—in a remarkably short period of time—of a massive AIDS service delivery system, which sought to fill the void left by traditional medical and social service organizations that were too scared or prejudiced to serve people with HIV/AIDS.

Many of the organizations and efforts represented at this conference and in this room can trace their origins to the empowerment philosophy embodied in the Denver Principles.

The Denver Principles expressed a fundamental truth: to be successful, the fight against the epidemic must include—as equal partners in the battle—the people who have the disease.

That truth has been recognized globally, including in the World Health Organization’s 1986 Ottawa Charter for Health Promotion; establishment of the GIPA Principle, endorsed by 42 nations at the 1994 Paris AIDS Summit; in the 2003 World Health Organization’s “3x5” treatment initiative; and, most recently, in the Mexico Manifesto, presented last month at the International AIDS Conference in Mexico City.

From the earliest days of the epidemic, we have had to fight horrific stigma against those who hate or fear us. But when they would not allow us to hold their children, work at their side, touch their dishes, use their towels or live under the same roof, 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—it was our empowered voice that gave us the political muscle to force change.

But today, all too often our focus on empowerment is a slogan rather than a system. One only needs to look at the invisibility of AIDS in this year’s presidential contest to see how our political muscle has atrophied, which has paved the way for greater stigmatization and disempowerment.
Another mark of this disempowerment is how people with HIV have disappeared from the boards of directors of AIDS organizations. Several years ago, I gave a World AIDS Day speech bemoaning the fact that some of the largest and best-known AIDS organizations in the country had diminished or only nominal HIV-positive representation on their boards of directors.

And even of those few HIV-positive people on the boards, it should be noted that they are individuals chosen by HIV-negative board majorities. Sometimes the people with HIV chosen to serve on boards are also employees of other AIDS-related agencies. Both are factors which sometimes can cloud or compromise priorities.

Many of these groups were founded by people with AIDS—founded to confront a status quo that was killing us. It still is, but some of the organizations we created to combat that status quo have abdicated their responsibility.

What’s more, they have cast those of us with HIV out of their boardrooms. That has been costly indeed. Concurrent with the decline of HIV-positive representation on these boards has been a decline in our number amongst the senior staff, as well as a decline in advocacy—a “toning down,” with some of the toughest issues relegated to backburner status.

In too many instances, prevention programs with integrity and results became secondary to those that could get funded. Complicated and controversial issues, like fighting criminalization, have been downplayed or ignored. The loss of positive representation on the boards of directors constitutes a de facto abandonment of the Denver Principles’s mandate to fight the epidemic in partnership with people who have the disease.

Representation on boards is, of course, only one measure of an organization’s commitment to empowerment. I acknowledge that it is an imperfect measure. But it is indicative of something that has gone terribly wrong—and which we must fix.

Measuring a provider organization’s commitment to empowerment is not an easy task, but I think it is time that we set out to do so in a systematic fashion.

I have a modest proposal, which is that we establish objective, quantifiable empowerment standards by which we can measure adherence to the Denver Principles.

This isn’t about saying this group is good and that one is bad; it is about providing a yardstick against which agencies and administrators and boards of directors and the community could measure performance.

It is about articulating what “empowerment” truly means in the challenging real world of nonprofit governance, resource constraints and delivery of services to communities already burdened by poverty, racism, sexism, homophobia, homelessness, addiction and mental health issues.
One model of empowerment is Housing Works, based in New York. Housing Works is legally constituted as a membership organization; every client, every volunteer and every staff member has voting rights, including for board positions. That is empowerment and very different from agencies whose boards are self-perpetuating.

Housing Works’s bylaws require that a third of their board be people with HIV and that people of color comprise more than 50 percent of their board. That is empowerment and a far cry from agencies with little diversity or that put one or two people with HIV on their board and then don’t provide those persons the training, skills and tools necessary to become effective board members.

Housing Works has more than 400 employees; about a third of them are former clients: people with HIV who were once homeless. That is empowerment and very different from many agencies whose proportion of HIV-positive employees has declined over the years.

Housing Works measures the performance of their caseworkers, in part, on how successful the caseworker is in getting a client registered to vote and involved in advocating for their rights. That is empowerment because participating in the political system is a necessary component to truly taking control of one’s life and health; the failure to encourage and promote such participation is, in my view, profoundly disempowering and shortsighted.

Housing Works is a huge agency with a budget this year of over $40 million. My point is not about Housing Works, but that this is not theoretical; genuine empowerment can be achieved in a large agency.

Housing Works is activist-oriented, often speaking first and most passionately about the rights of people with AIDS, demonstrating leadership, and fighting stigma and criminalization. That is not a coincidence; it is a result of its governance structure and putting into practice a commitment to the Denver Principles.

One aspect of the epidemic that I think has especially suffered from the diminished influence of HIV-positive voices is in regards to HIV prevention.

We have a prevention paradigm built on the illusion of “zero risk,” which contributes to stigmatization of people with HIV as vectors of disease and encourages HIV-negative people to have a false knowledge of the actual risks inherent in sexual contact.

We must work to expand the sexual safety zone for people with HIV—which I believe is critical to HIV prevention—through risk-reduction strategies like serosorting, seropositioning, pre- and post-exposure prophylaxis and incorporating viral load and treatment status into risk assessment.
There are circumstances, for some serodiscordant couples, when the risk of sexual transmission of HIV is so negligible or nonexistent as to render obligatory condom use—to further reduce the risk of transmission—as unnecessary. The January 30, 2008 statement by the Swiss Federal HIV/AIDS Committee (EKAF) recognized these facts.

The assertions made in the Swiss statement are rightfully subject to continued and important scientific debate. They ought to also be subject to a widespread discussion within the community. But that has not happened.

The provocative Swiss statement was first met by silence or outright rejection from most AIDS policy leaders in the United States, who were more intent on reinforcing the “use a condom every time” message than taking advantage of an extraordinary opportunity to engage the community in a more nuanced discussion about risk reduction, and the impact of antiretroviral treatment on infectiousness.

Perpetuating an illusion of safety for those who are HIV negative is more important to many than recognizing the right to sexual intimacy for people with HIV and how that can be safely achieved.

Put simply, the sexuality of people with HIV is considered more as a threat to society than it is as a fundamental and necessary part of our lives and identity. Our right to intimacy has been devalued, despite the Denver Principles proclamation of “as full and satisfying sexual and emotional lives as anyone else.”

Restoring complete intimacy to the sexual lives of people with HIV is of vital importance to the dignity, quality of life and health of people with HIV. Moreover, social integration, without the crippling burdens of stigma or stereotyping, is crucial to reducing the spread of the virus and enabling people with HIV to fulfill one of the responsibilities outlined in the Denver Principles, which is to disclose their HIV status to their sex partners.

Efforts to restore safe intimacy to the sexual lives of people with HIV are to be celebrated. Opposing such efforts is an insult to people living with HIV, is discriminatory, perpetuates stigma, and reveals the hypocrisy of some who claim to be concerned with the well-being of people with HIV.

We ought not to be timid or shamed when pursuing our rights, whether that is demanding representation on boards of directors or pursuing our right to sexual intimacy. We may be stigmatized by the culture, marginalized by political leaders and criminalized by the law, but we must not be silent.

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 is our hope for the future. Thank you.

Sean Strub is a longtime AIDS activist and the founder of POZ magazine. He has lived with HIV for more than 25 years.

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People With AIDS

From Wikipedia, the free encyclopedia

People With AIDS (PWA) Self-Empowerment Movement is a social movement of those diagnosed with AIDS/HIV and grew out of San Francisco in the early 1980s. The PWA Self-Empowerment Movement believes that those diagnosed as having AIDS should "take charge of their own life, illness, and care, and to minimize dependence on others". The attitude that exists throughout the movement is that one should not assume that their life is over and will end soon solely because they have been diagnosed with HIV and AIDS. PWA can be pluralized or singularized to also refer to person with AIDS/HIV, it is a common initialism in medical and mainstream communities. Although most of the earliest organizers have died, and organizations dissolved or reconfigured into AIDS service organizations (ASOs) the self-empowerment and self-determination aspects of the movement continue. Possibly the best known example of a continuing PWA group is AIDS Coalition To Unleash Power (ACT-UP), which has chapters around the world and has had great success bringing attention to and change regarding issues concerning PWAs.

History

The two (Bobbi Campbell and Dan Turner) met at Turner’s house in the Castro. There, they laid the groundwork for what was to become known as People with AIDS San Francisco. After that, Turner was invited to speak at the birthday party of the late Harvey Milk, the openly gay city supervisor of San Francisco who was assassinated in 1978. On Castro street, Turner, as well as Campbell, identified themselves publicly as having AIDS. Turner’s speech contained three points: To keep informed, be cautious (but not paranoid), and to be supportive. He went on to note that he had just completed a marathon, despite having completed nine chemotherapy treatments for Kaposi’s sarcoma. This was the first of many speaking events for Campbell and Turner.

Shortly afterwards, a meeting was held, at which the KS/AIDS Foundation was formed, this later became the San Francisco AIDS Foundation. At another meeting, Campbell and Turner brought together a group that formed "People With AIDS San Francisco". In May 1983, the first AIDS candlelight march led and organized by people with AIDS was held. The stated goal was to draw attention to the plight of those with AIDS, and to remember those who had died. The march was led by a banner with the slogan "Fighting For Our Lives", which became the motto of the movement.

Later that month, on 23 May 1983, People With AIDS San Francisco voted to send Campbell and Turner to the National Lesbian and Gay Health Conference, at which the Second National AIDS Forum would be held.

New York Activists

On the East Coast, New York City served as another hotbed for the movement. One of the first People With AIDS groups in the east was formed by Michael Callen and Richard Berkowitz. Callen and Berkowitz met through their doctor, Joseph Sonnabend, in 1982. Initially, Callen and Berkowitz attended a peer support group for people with AIDS at Beth Israel Hospital, as well as meetings of Gay Men's Health Crisis.

The two grew frustrated with the meetings, however, and left to form Gay Men With AIDS. In the same year, they wrote an article for the New York Native titled “We Know Who We Are: Two Gay Men Declare War on Promiscuity”. In it, they put forth that AIDS was the result of not a single virus, but a cumulative overload of the immune system from sexual promiscuity and abuses of the body. Although their hypothesis on the cause of AIDS was dismissed by many, they did state that the more sexual partners you have, the higher the likelihood of contracting HIV/AIDS. And today, it has been shown that sexually transmitted infections not only increase HIV's infectivity, but also infectability by HIV.

Somewhere in mid to late 1982, several of Callen and his fellow people with AIDS became aware of the New York AIDS Network, which met every Tuesday morning at the East Village offices of the Community Health Project. The New York AIDS Network was founded by Hal Kooden, Virginia Apuzzo and a doctor, Roger Enlow, as an open political forum for the sharing of information related to AIDS.

As those in New York grew frustrated from listening to doctors, nurses, lawyers, insurance experts and social workers talk about AIDS, they realized they were hearing very little from the “real” experts. The decision was made to attend the Second National AIDS Forum at the National Lesbian and Gay Health Conference, which was sponsored by the Lesbian and Gay Health Education Foundation. By this point, some of the activists in New York learned of Bobbi Campbell and others in San Francisco. They learned that Campbell and others would be in attendance, and had been calling on organizations that provided AIDS services to sponsor gay men in order so that they may attend the conference. Alan Long, another person with AIDS, sponsored three of the New York activists to attend the conference in Denver.

The Denver Conference

At the conference, which had the theme “Health Pioneering in the Eighties”, people with AIDS from around the country met, gathering in a hospitality suite organized by Helen Shietinger, R.N. and Dan Bailey, who coordinated the event. Although an incomplete list, below are some of those who were in that room.

Those In Attendance

• Bobbi Campbell
• Dan Turner
• Bobby Reynolds
• Michael Helquist (Who was not a person with AIDS, but was the partner of Mark Feldman, who had planned to attend but died shortly before the conference)
• Phil Lanazaratta
• Artie Felson
• Michael Callen
• Richard Berkowitz
• Bill Burke
• Bob Cecchi
• Tom Nasrallah
• Gar Traynor
• Elbert (Last name unknown), of Kansas City
• An individual whose name is unknown, from Denver

Debate

Bobbi Campbell took charge of the discussion. He believed in a political network of persons with AIDS groups in every major city. It was believed that these groups would then form a National Association of People With AIDS. There was very little friction between those in attendance, with only small arguments such as the terms patients and victims versus people with AIDS, the latter of which was agreed on as being the label of choice. This discussion led to the drafting of The Denver Principles.

The Denver Principles

The Denver Principles were drafted during the conference. They read:

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.’.

RECOMMENDATIONS FOR ALL PEOPLE.

1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.

2. Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

RECOMMENDATIONS FOR PEOPLE WITH AIDS.

1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.

2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.

3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

4. Substitute low-risk sexual behaviors for those that could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.

RIGHTS OF PEOPLE WITH AIDS.

1. To as full and satisfying sexual and emotional lives as anyone else.

2. To quality medical treatment and quality social service provision without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race.

3. To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.

4. To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.

5. To die--and to LIVE--in dignity.

The drafters of The Denver Principles stormed the closing of the conference in order to present their work. At the presentation, the San Francisco activists had brought the “Fighting For Our Lives” banner. The presentation brought the crowd to tears, and it was a full ten minutes until the audience was able to compose itself. The keynote speaker, Ginny Apuzzo, in response to the presentation, opened with, “if those health care providers in attendance were the health care pioneers, then those of us with AIDS were truly the trailblazers”.

After the Denver Conference

After the Denver Conference, four of the activists (Bobbi Campbell, Richard Berkowitz, Artie Felson, and Mike Campbell) began to plan for the National Association of People with AIDS while on the smoking section of the plane. Afterwards, the first of the political organizations planned was formed, called simply PWA-New York. While PWA-New York initially was met with resistance by the Gay Men’s Health Center, the two organizations learned to coexist.

PWA-New York is noted for designing the first safer sex poster to appear in New York bathhouses. Across the country, PWA organizations became active. In Denver, local PWA members took part in parades and lobbied in the legislature (In general, putting a human face on the disease). In San Francisco, posters similar to those in New York were distributed.

In June 1984, the annual Gay Freedom Day Parade in San Francisco was dedicated to people with AIDS. People With AIDS marched near the front of the parade, with Bobbi Campbell and the “Fighting For Our Lives” banner.

PWA Coalitions and National Organizations

By the mid-eighties, PWA-New York faced challenges. A negative environment, combined with the deaths of many founders, led to the group being disbanded. However, the New York activists were quick to rebound, forming the PWA Coalition. PWA Coalitions continue to exist today throughout the country. In 1987, the National Association of People With AIDS was incorporated as a 501(c)3 not–for–profit corporation to be the national voice of people with AIDS. Today, it is the oldest national AIDS organization in the United States and the oldest national network of people living with HIV/AIDS in the world.

The Denver Principles Project

In 2009, the National Association of People with AIDS (NAPWA) and POZ magazine announced a new initiative called The Denver Principles Project.[1] The Denver Principles Project will recommit the HIV community to the Denver Principles and dramatically increase NAPWA's membership.[1] With a vastly increased membership, NAPWA will be better able to advocate for effective HIV prevention and care, as well as to combat the stigma that surrounds HIV and impedes education, prevention and treatment of HIV.

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Last updated: Saturday, July 2, 2011.

Copyright (c)1999-Present:

The Michael W. Connett Living Trust/South Bank HIVe