Revisiting ‘The Denver Principles’ for people with AIDS.
by Kelly A. McCann
In 1983, I was 22 years old and just graduating from college. I was focused on getting into graduate school, getting to the gay bar for nightly drink specials, and getting to know lots of women, but not necessarily in that order. HIV and AIDS were in the news but not yet a part of my world (or at least I didn’t know it was already impacting my life).
At that time, we knew very little about AIDS other than it was a scary, deadly disease with no treatment. We hadn’t yet identified HIV as the causative agent, so various theories about AIDS were being examined. Was it due to a virus or some other germ? Was it from use of poppers? Dancing to disco music? Having gay sex?
To make matters worse, those with AIDS faced serious discrimination in employment, housing, dental care, and even medical treatment. Many people with AIDS experienced social isolation as their friends, colleagues, and family members refused to touch them, share eating utensils, or go to the toilet after them. And still others with AIDS faced threats to their physical safety and personal liberties.
In order to address those issues, a group of people with AIDS got together in Denver that year to discuss the rights and expectations of those living with the disease. They created a manifesto on self-empowerment known as the Denver Principles, which asserted that those living with AIDS had human rights and responsibilities, and they should participate in the decision-making process that would so decidedly impact their lives.
Since 1983, this invaluable document has served to guide the development of the HIV system of care, as well as its funding and allocation bodies and procedures. Now, in 2009, despite the significant progress we have made over the last two and a half decades in the fight against AIDS, we must acknowledge there is still much to do, especially in the areas of access to care, AIDS stigma and discrimination, and the eradication of HIV.
Therefore, the National Association of People with AIDS (NAPWA) and Poz magazine have created a new initiative wherein individuals and agencies within the HIV community are being asked to recommit themselves to the Denver Principles.
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 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.
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 that 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.
Kelly A. McCann is the chief executive officer of AIDS Foundation Houston. To learn more about the Denver Principles or to pledge your support, please visit www.napwa.org/denverprinciplesproject.