AIDS activism was launched 25 years ago with the creation of The Denver Principles—a revolutionary manifesto written in 1983 by a small group of people with AIDS at a health conference in Denver. The Denver Principles declared the rights and responsibilities of people with AIDS; it was the foundation of the self-empowerment movement for people with HIV. It informed the treatment activism, public education and awareness efforts that followed. For people with HIV, The Denver Principles became our Declaration of Independence, Bill of Rights, Constitution and Magna Carta rolled into one.
A few weeks later, the same people who wrote The Denver Principles founded the National Association of People with AIDS, or NAPWA. Their vision was that NAPWA would represent the HIV community, providing a powerful, unified voice for us in the media, on Capitol Hill and with the legislative and executive branches of our government.
There is a great need again for those of us living with and affected by HIV/AIDS to come together in a single national organization—one that is bigger and louder than any we have known before. Twenty-eight years into the AIDS epidemic, there is still much to be done to change the way we test for, prevent and treat HIV. And the only way to bring about significant change today is if a modern group of AIDS activists and advocates demands it—just as our brave predecessors did more than a quarter of a century ago. By joining forces in a massive, national membership in NAPWA, we can once again make our voices and needs heard by those who have turned a deaf ear to our cries.
Self-empowerment has always been the key to AIDS activism. That is why, 25 years after The Denver Principles were created, 25 years after NAPWA was founded and 15 years after POZ published its first issue, POZ and NAPWA have used The Denver Principles as the basis for an exciting new joint initiative called The Denver Principles Project.
The project is intended to raise awareness of The Denver Principles among service providers and their clients and to encourage today’s HIV community to recommit to The Denver Principles’ tenets of self-empowerment. The project will also enable NAPWA to build the largest possible network of people living with HIV/AIDS and allies ever assembled, giving it the voice and authority it needs to be a powerful advocate. With Congress embarking on national health care reform, it is a critical time to amass and flex our collective power and will. Our voices must be heard by Obama and his administration if we are to secure our health care needs.
We know that the answer to addressing the AIDS epidemic lies, in part, in a large and involved base of supporters—a NAPWA membership whose collective experience will create the knowledge to help guide the development of best practices for preventing and treating HIV. The involvement of people with HIV is essential to help determine the path for better treatments—and a better quality of life, longevity and dignity.
The powerful voices of people living with HIV have been largely absent from key discussions about AIDS; the stigma around the disease has increased; prevention campaigns are few and far between; too many people can’t get treatment; and our leadership is fractured. At this unique moment in American political history, we must, as a community, recommit to The Denver Principles. We must again demand a seat at the same table with those making decisions that affect our lives. We must take the power to control our health, and our lives, back into our own hands. We must render health care information truly unbiased and ensure that all people with HIV have the right and ability to access the information tools and care they need to survive. By doing these things, we can lead each other, and the world, to a new place of better health care.
People living with HIV/AIDS have always been and will always be the most authoritative resource on the subject. In the early days of the epidemic, the direct feedback from the HIV community provided substantially more empirical data about how to best fight AIDS than any scientific findings at the time. At POZ magazine, we reflected what we heard from the community, writing about, for example, a particular drug’s side effect. The story would get the attention, and sometimes ire, of the pharmaceutical companies. By using our editorial coverage as a way to highlight the needs of the community, we helped, in part, ensure that the issue was addressed and that new medicines were eventually developed with fewer side effects. As a result of listening to tens of thousands of people with HIV throughout our 15-year history, POZ’s stories of what it’s like to live with HIV in America became among the most extensive, comprehensive and accurate depictions of their kind. We saw firsthand how, when people with HIV/AIDS are willing to share information about how they live with the disease, that information can be used to help develop and shape best practices and outcomes for the whole HIV community.
However, over time, the voices and real-life experiences of people with HIV became subsumed by increasing—and welcome—attention to HIV/AIDS by those outside the community. As therapies for HIV improved, the fervor of AIDS activism waned. It wasn’t that people with HIV stopped communicating what they needed; it was that our voices increasingly were drowned out.
The onset of new treatment regimens in the mid-1990s altered the landscape around HIV: We weren’t dying from HIV as we were before. There was, understandably, a sense of relief—maybe even a justifiable reason to pause and rest after so many years of fighting for our lives.
As a result, fewer of us came forward to speak about our needs and concerns or participated on the boards of trustees of provider organizations. Over time, the HIV community became less unified, less focused on activism—and less visible. Complacency and AIDS fatigue set in. AIDS was labeled as “manageable” in America, portrayed as “out of control” only in the developing world. AIDS all but fell off the radar of mainstream America by the late ’90s.