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Your Brighter Future Starts Here
Meanwhile, the epidemic raged on and continued to spread across the U.S. population. New infections skyrocketed among African Americans and Latinos, especially among gay men (and other non-gay-identified men who have sex with men) and women. The virus affected more young people, more women and more people older than 50. While progress continued on the treatment front, federal funding flatlined for programs that assist people living with HIV, such as Housing Opportunities for Persons With AIDS (HOPWA), AIDS Drug Assistance Programs (ADAP) and those under the Ryan White CARE Act.
As a result, many Americans with HIV, especially those who were newly diagnosed, could not access and/or afford care, treatment and other needed services. For too many people with HIV, a life of isolation, fear and ill health was the norm. The stigma that has plagued HIV since it was discovered has yet to wane. Though we have come a long way on the treatment front, we have much work yet to do. We must encourage voluntary testing (about 21 percent of the 1.1 million people estimated to be positive in the United States don’t know it). We must get those who need treatment into care. And we must reduce the stigma around the disease so we can more effectively prevent and treat HIV.
But though it may appear that AIDS activism has been significantly diminished, it hasn’t—it has not been effectively organized, galvanized or led. The massive, interactive readerships of POZ and AIDSmeds prove that tens of thousands of people living with and affected by HIV are all too willing to participate in an active community of others trying to survive HIV. From the daily e-mails and phone calls we receive and the responses to our online and magazine polls and surveys, to the comments posted on our news stories, editorial coverage, blogs and forums, and to the more than 80,000 active members of POZ Personals and POZ Mentors, we know that there is a lively, engaged group of people ready to fight for their own lives—and those of the people standing beside them.
Because POZ and AIDSmeds are educational, informational vehicles, we recognize the need to connect our readership to a national advocacy group empowered to advocate on behalf of its members. By encouraging our readers to become members of NAPWA, and by hosting information about that membership in a secure environment that protects an individual’s privacy, we can daylight the critical, collective information that has been contained for years in the communication within our readership. As a result, the whole community can use and benefit from the real-life wisdom of people living with HIV.
The Denver Principles
The pioneering activists who created The Denver Principles—Richard Berkowitz, Bill Burke, Michael Callen, Bobbi Campbell, Bob Cecchi, Artie Felson, Phil Lanzarratta, Tom Nasrallah, Bobby Reynolds, Mathew Sarner, Gar Traynor, Dan Turner, Elbert (last name unknown) of Kansas City and an individual whose name is unknown, from Denver-—rejected the label of “victim” for people with HIV because it implied passivity and defeat. They noted that we are only occasionally “patients”—stating that our correct moniker be “people with AIDS.” Later, this was amended to “people living with HIV/AIDS” using the acronym PLWHA.
The Denver Principles asserted the right of people with HIV/AIDS to participate in all forums about HIV, on the boards of provider and other organizations and in the development of policies and programs that would directly, and indirectly, affect our lives. The Denver Principles empowered the HIV community to create an extraordinary peer-to-peer service delivery system, implement highly successful community-based HIV prevention strategies and successfully combat stigma. In the years since, UNAIDS, the World Health Organization (WHO) and other international organizations have used The Denver Principles as a model for service delivery to disenfranchised communities
The authors of The Denver Principles wrote:
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.”
The Denver Principles made specific recommendations for people living with HIV. Specifically, it suggested that we:
- Form caucuses to choose our own representatives, to deal with the media, to choose our own agenda and to plan our own strategies.
- Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
- Be included in all AIDS forums with equal credibility as other participants, to share our own experiences and knowledge.
- 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.
In addition, it made recommendations for health care professionals, including that they:
- Come out, especially to their patients who have AIDS.
- 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.
- Get in touch with their feelings (e.g., fears, anxieties, hopes, etc.) about AIDS and not simply deal with AIDS intellectually.
- Take a thorough personal inventory and identify and examine their own agendas around AIDS.
- Treat people with AIDS as a whole people, and address psychological issues as well as biophysical ones.
- 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.
The Denver Principles also made some suggestions for the general public. They were to:
- [Offer] support and 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.
- Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.
And, finally, The Denver Principles laid out the right of people with HIV/AIDS:
- To live as full and satisfying sexual and emotional lives as anyone else.
- To receive quality medical treatment and quality social service provision without discrimination of any form, including sexual orientation, gender, diagnosis, economic status or race.
- 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.
- To ensure privacy and confidentiality of medical records, to receive human respect and the right to choose who their significant others are.
- To die—and to LIVE—in dignity.
While some of the specific language in The Denver Principles may feel outdated or incomplete today, the essence of self-empowerment, our right to participate in the decision-making processes that affect our lives and our right to enjoy the same full, long life as anyone with any other health condition are as relevant today as when the words were first written.
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