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Gay Communities & HIV: 32 Years of AIDS

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  1. Gay Communities & HIV:32 Years of AIDS Lee E. Klosinski, Ph.D. UCLA Nathanson Family Resilience Center Semel Institute for Neuroscience & Human Behavior

  2. Gay Communities & HIV What facilitated the impact of HIV infection among gay communities in the U.S.? How did gay men shape the US response to the HIV epidemic? How are gay communities currently shaped by HIV? What are the emerging issues?

  3. About language: GAY • Cheerful, carefree • Sexualization of the term=> uninhibited by moral restraints • Moralization of the term=> sinner, sick, criminal

  4. About language: GAY COMMUNITY • Identity movement • Gay communities not gay community • Unifiers: pride, diversity, individuality, sexuality, minority status • Civil rights movement • GLBT community

  5. About language: Gay vs. MSM • Self-identification vs. behavior • “Men who have sex with men” (MSM) identifies a behavior, not an identity

  6. What facilitated the impact of HIV on gay communities? • Post-war concentration of gay men in urban centers

  7. What facilitated the impact of HIV on gay communities? • Ignition of Gay Civil Rights Movement in 1969 (and before)

  8. What facilitated the impact of HIV on gay communities? • Post-war mobility • Sexual revolutions of 1960s • Sexual access

  9. RARE CANCER SEEN IN 41 HOMOSEXUALSBy LAWRENCE K. ALTMANNew York Times, July 3, 1981 Doctors in New York and California have diagnosed among homosexual men 41 cases of a rare and often rapidly fatal form of cancer. Eight of the victims died less than 24 months after the diagnosis was made. The cause of the outbreak is unknown, and there is as yet no evidence of contagion. But the doctors who have made the diagnoses, mostly in New York City and the San Francisco Bay area, are alerting other physicians who treat large numbers of homosexual men to the problem in an effort to help identify more cases and to reduce the delay in offering chemotherapy treatment. The sudden appearance of the cancer, called Kaposi's Sarcoma, has prompted a medical investigation that experts say could have as much scientific as public health importance because of what it may teach about determining the causes of more common types of cancer.

  10. How did gay communities shape the HIV epidemic in the U.S.? • Community-based care models

  11. How did gay communities shape the HIV epidemic in the U.S.? • Community-based care models • Ethos: A patient-led health movement

  12. PWA EmpowermentThe Denver Principles-1983 • We condemn attempts to label us “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.”

  13. Denver Principles RECOMMENDATIONS FOR ALL PEOPLE: • 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. • Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

  14. Denver Principles RECOMMENDATIONS FOR PEOPLE WITH AIDS: • Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their 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 their own experiences and knowledge. • 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.

  15. Denver Principles RIGHTS OF PEOPLE WITH AIDS: • To as full and satisfying sexual and emotional lives as anyone else. • To quality medical treatment and quality social service provision without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race. • 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. • To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are. • To die – and to LIVE – in dignity.

  16. How did gay communities shape the HIV epidemic in the U.S.? • Community-based care models • Ethos: A patient-led health movement • Community-based prevention

  17. How did gay communities shape the HIV epidemic in the U.S.? • Community-based care models • Ethos: A patient-led health movement • Community-based prevention • Activism

  18. ACT-UP AIDS Coalition to Unleash Power

  19. Activism’s Legacy “We had the brainpower, and we had the street power. We, ACT-UP, got those drugs out there. It is the proudest achievement that the gay population of this world can ever claim.” Larry Kramer “How to Survive a Plague”

  20. What Drove AIDS Activism? • Social status of impacted group • Gay identity politics resulted in rapid response to threat to identity • Legacy of feminist health movement • Youth of impacted population • Guarded prognosis of HIV/AIDS diagnosis • Engagement with medical profession

  21. What is the legacy of AIDS activism? • Infection control • FDA reforms: drug testing, access to investigational new drugs, Phase IV follow-up • Patient-provider relationship • Comprehensive social & medical response • Research • Response to international epidemic

  22. How did gay communities shape the HIV epidemic in the U.S.? • Community-based care models • Ethos: A patient-led health movement • Community-based prevention • Activism • Mourning

  23. How are gay communities currently shaped by HIV? • Disproportionately impacted, especially men of color

  24. How are gay communities currently shaped by HIV? • Disproportionately impact • High risk behaviors are increasing

  25. What are the emerging issues for gay communities? • Impact of methamphetamine

  26. What are the emerging issues for gay communities? • Impact of methamphetamine • Ownership: HIV is not a gay disease