At the Second National AIDS Forum in Denver, Colo., in 1983, a group of men and women, most of whom were already diagnosed and living with AIDS, drafted what would soon after become known as "The Denver Principles."
That document changed the way those living with HIV and AIDS were seen by both the public and popular media, and the way those living with the disease saw themselves. The Principles pre-amble states: "We condemn attempts to label us as 'victims,' a term which implies defeat, and we are only occasionally 'patients,' a term which implies passivity, helplessness, and dependence upon the care of others. We are 'People With AIDS.'" That statement would begin to define a disease, its treatment and those living with it for the next three decades.
Mark S. King, author of the blog "My Fabulous Disease" called the Principles "revolutionary." King went on, "Can you even imagine? Here, a group of people with AIDS decide to sit down and determine for themselves what they would be called and how they would be treated. Remarkable."
Sean Strub, founder of POZ Magazine, believed that the reason for such profound actions was "a confluence of several factors, including that several of the men were feminists and had that political consciousness and that the 'experts' knew so little about this. Those of us who had the disease knew more than anyone else, so we were learning from each other. We needed to learn from each other if we were going to learn at all. The extent to which people with AIDS were also marginalized, stigmatized and feared ( including by many in the LGBT community ) also contributed to creating a sense of solidarity amongst those who were ill."
King agreed that those individuals who actually had AIDS or who were HIV positive in many cases knew more than even the doctors did at that time. "That document established the idea that 'I am a human being' in the eyes of the medical profession.'" King continued, "Patient empowerment is exactly what the Denver Principles are saying. I am the most important person in the process of my healthcare, not my doctor."
Strub wrote, in a recent paper on the Principles that, "People who had the disease founded and served on the boards of directors and comprised much of the staff and volunteers of the first AIDS organizations in the U.S. Those organizations grew dramatically in the 1980s and 1990s, pioneering a peer-to-peer, self-empowerment service delivery model. Absent these organizations' efforts, many tens of thousands more would surely have died."
The early days of AIDS saw a time of an as-of-yet unknown illness that was rapidly killing gay men. Many in the United States and the world saw this as divine retribution or punishment for what was considered an immoral lifestyle. President Reagan, despite the disease having been discovered in 1981, the drafting of the Principles in 1983 and the deaths of countless individuals, never publicly mentioned AIDS until 1985. It was in that climate that the men and women who drafted the Principles were operating.
Strub wrote concerning the aftermath of the Principles that, "It was an achievement unparalleled in history, with an outpouring of volunteerism, activism, caring and love that defined a generation and has had an impact far beyond the HIV/AIDS pandemic."
But despite this positive leap forward in the self-empowerment of those living with HIV and AIDS, Strub cautioned that, "over time, the initial AIDS activists who championed the self-empowerment movement died or became overwhelmed and exhausted from their years of social and political action. As the epidemic spread and settled into communities already ravaged by poverty and discrimination, the leadership of the self-empowerment movement became displaced and the epidemic institutionalized."
Strub pointed out that the decline in the novel manner in which the Denver Principles operate is "more about how 'AIDS, Inc.' has grown and the epidemic has been subsumed by the broader ills affecting our healthcare system." Despite the decline in self-empowerment and the rise of institutionalization of AIDS and HIV organizations, there have been recent efforts for a re-commitment to The Denver Principles.
It has been Strub's goal to not only see AIDS and HIV organizations and service providers recommit to The Denver Principles, but to hold them accountable by the public that they serve. He is currently working on a Denver Principles Empowerment Index. The Index is intended to chart items like financial transparency, the costs of fundraising and the number of HIV-positive people serving on the board of the organization, as well as measure to which degree their clients felt empowered and involved in their personal healthcare decisions.
For Strub, The Denver Principles were not only empowering personally but also publicly innovating. "The empowerment that came out of the Denver Principles is what led to a long list of milestones, achievements and innovation in the epidemic, including promotion of 'safer sex', i.e. condom usage, community-based clinical trials, peer-to-peer support and buddy systems, widespread adoption of PCP prophylaxis prior to NIH promotion of it, community representatives involved in clinical trial design and many facets of the drug development and approval processes, regulatory reform of the FDA processes to expedite treatments, etc.," he said.
King noted that The Denver Principles may not always be in full force but their after-effects "influenced the doctor/patient relationship in every disease category, benefitting millions of patients." King said that, "Anyone facing a chronic illness should laud the amazing journey and profound importance of this document."
What follows is from The Denver Principles, Statement from the Advisory Committee of People with AIDS ( 1983 ) :
We condemn attempts to label us as 'victims,' a term which implies defeat, and we are only occasionally 'patients,' a term which implies passivity, helplessness, and dependence upon the care of others. We are 'People With AIDS.'
Recommendations for health
care professionals
1. Come out, especially to their patients who have AIDS.
2. Always clearly identify and discuss the theory they favor as to the cause of AIDS, since this bias affects the treatments and advice they give.
3. Get in touch with their feelings ( e.g., fears, anxieties, hopes, etc. ) about AIDS and not simply deal with AIDS intellectually.
4. Take a thorough personal inventory and identify and examine their own agendas around AIDS.
5. Treat people with AIDS as a whole people, and address psychological issues as well as biophysical ones.
6. Address the question of sexuality in people with AIDS specifically, sensitively and with information about gay male sexuality in general, and the sexuality of people with AIDS in particular.
Recommendations for all people
1. Support & Membership 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 board 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 which could endanger themselves or their partners; we feel that people with AIDS have an ethical responsibility to inform their potential partners of their health status.
Rights of People with AIDS
1. To live as full and satisfying sexual and emotional lives as anyone else.
2. To receive quality medical treatment and quality social service provision without discrimination of any form, including sexual orientation, gender, diagnosis, economic status or race.
3. To obtain 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 ensure privacy and confidentiality of medical records, to receive human respect and the right to choose who their significant others are.
5. To die—and to LIVE—in dignity.
This story is part of the Local Reporting Initiative, supported in part by The Chicago Community Trust.
