30 Years Is ENUF!

AIDS30 Years Is ENUF! The History of the AIDS Epidemic in Black America Black AIDS Institute June 2011 AIDS: 30 Years Is Enuf! The History of the AIDS Epidemic in Black America, 2011 is a publication of the Black AIDS Institute, 1833 West Eighth Street, Los Angeles, California 90057-4257, 213-353-3610, 213-989-0181 fax, [email protected], www.BlackAIDS.org. © 2011 Black AIDS Institute. All rights reserved. The slogan “Our People, Our Problem, Our Solution” is a trademark of the Black AIDS Institute. Views and opinions expressed in this publication are not necessarily those of the Black AIDS Institute, its partners or the funders of this publication. Publication of the name or photograph of a person does not indicate the sexual orientation or HIV status of the person or necessarily constitute an en dorse ment of the Institute or its policies. Some photographs in this publication use professional models. AIDS: 30 Years Is Enuf! The History of the AIDS Epidemic in Black America, 2011 is designed for educational purposes only and is not en gaged in rendering medical advice or profession al services. The information provided through this publication should not be used for diagnos ing or treating a health problem or a disease. It is not a sub stitute for profes sional care. This report was made possible, in part, by the generous support of the Elton John AIDS Foundation, Ford Foundation, MAC AIDS Fund, John M. Lloyd Foundation and Broadway Cares/Equity Fights AIDS. Table of Contents 4 From the CEO 8 Forward by Rosalyn Brock and Benjamin Todd Jealous 10 Executive Summary 16 The History of the AIDS Epidemic in Black America What is AIDS? Still Standing After All This Time We Have Survived 34 AIDS Timeline 46 Viral Generation They’ve Got SWAG 72 Leadership Matters The 30 Most Influential Black AIDS Leaders People You Might Not Know, Whom You Should! Leaders to Look Out For 80 We Have the Tools 90 Presidential Report Cards 96 Recommendations 102 Appendix 1: Glossary of Terms 112 Appendix 2: Glossary of Acronyms 116 About the Institute Ver. 1.4 Sheryl Lee Ralph FROM THE CEO AIDS: 30 Years Is Enuf! The History of the AIDS Epidemic in Black America Marking the 30th year of the epidemic brings to the surface so many powerful and conflicting emotions for me personally that I find it difficult to make sense of them all. I’m acutely aware of how lucky I am and how improbable it was when I was infected that I would be alive today. But here I am, the personifi- cation of what can happen when people with HIV have the love and support of family and friends and the care and treatment we need. Hundreds of thousands of Americans living with HIV are alive today because of scientific breakthroughs. This milestone provides a moment to reflect and give thanks. Yet I’m also mindful of all that has been lost. More than half a million people have died of AIDS in this country. Worldwide, the death toll is over 25 million. They aren’t here to witness the end of the epidemic’s third decade. I remember MReggie, Marlon, Essex, Belynda, Rory, Roger, Craig, Brandy, Sylvester, Assotto, and the count- less friends, loved ones and cherished colleagues gone too soon. No amount of scientific advances will bring them back, but their memories comfort me when I’m feeling lonely and inspire me to keep fighting until it is over. Thirty years since the first official report of AIDS among six white gay men at UCLA medical center in Los Angeles, I’m also buffeted by conflicting emotions regarding how much we have failed to do. I’m mindful of the extraordinary opportunities we now have, but also beset by Phill Wilson 6 AIDS: 30 Years Is Enuf! concern that we won’t do the right thing. Only during the third decade of AIDS was In May 2011, federal health officials -an the epidemic considered to pose a “state of emer- nounced that a major clinical trial demonstrated gency” in Black America. By this point, Black that early initiation of antiretroviral therapy people were more than seven times more likely sharply lowers the risk of HIV transmission. Ac- than whites to become infected. cording to study results, HIV-negative partners In 1996, approval of a new class of antiret- of HIV-positive individuals who started treat- roviral drugs, protease inhibitors, presented a ment early were 96 percent less likely to become second historic opportunity to act. When used in infected than uninfected partners of individuals a combination cocktail with other antiretroviral who waited later to begin therapy. classes, these new drugs proved to be powerfully In 2010, we also received strong positive effective in stopping HIV in its tracks. Nationally, evidence from a clinical trial regarding the effec- AIDS deaths plummeted. tiveness of a vaginal microbicide. Last year also But when the treatment revolution came, witnessed the release of major new findings that Black America again was unprepared. Too few daily use of pre-exposure prophylaxis signifi- Black people recognized the threat posed by cantly reduces the risk of transmission among AIDS or the extraordinary promise of the new gay and bisexual men. medications. Far too many of us continued to be These results are nothing short of earthshak- diagnosed late in the course of infection, after ing. Especially when combined with the expand- HIV had already severely damaged the body’s ing array of other prevention tools, antiretroviral immune system. The robust community-based therapy holds the potential to make new HIV treatment education initiatives for which the infections exceedingly rare. Indeed, these study AIDS response was rightly hailed were largely results make it reasonable—indeed, imperative— located in white communities, and precious few to begin discussing a possible “end game” to the programs were created to address the impedi- epidemic. ments that many Black people face in adhering to In fact, these findings merely underscore the demanding antiretroviral regimens. realistic prospects for achieving the vision set The eventual result has been as tragic as it forth in the National HIV/AIDS Strategy: “The was predictable. In the HIV treatment era, racial United States will become a place where new HIV and ethnic disparities in HIV medical outcomes infections are rare and when they do occur, every have actually widened in the U.S. Since the mid- person regardless of age, gender, race/ethnicity, 1990s, well-resourced communities have thrived sexual orientation, gender identity or socio-eco- on HIV medications, while low-income commu- nomic circumstance, will have unfettered access nities of color have failed to reap anywhere near to high quality, life-extending care, free from the same degree of benefit. In the wealthiest and stigma and discrimination.” most powerful nation on earth, we have failed It’s impossible not to rejoice at these new to ensure that the fruits of modern medicine are findings. Yet as my spirits soar at the prospect of provided to those who need them the most. bringing this three-decade-long struggle to an So in 2011, as we appear to be on the cusp of end, I’m reminded of how many times we’ve frit- a new era in the long fight against AIDS, I can’t tered away critical opportunities. This failure to stop the sad history of missed opportunities from act when historic progress was possible has had dampening my new-found hope. especially devastating consequences for Black Will our country—and especially Black America. America—be prepared this time to seize this de- From the epidemic’s earliest days, it was ap- ciding moment? What needs to happen to ensure parent that Black Americans were disproportion- that we rapidly progress toward the long-hoped- ately affected by the epidemic. Yet the epidemic for “end game” for AIDS? in its early years was consistently portrayed as a What is crystal clear is that we must be bold, problem for white gay men. Neither our national courageous and radical in our thinking. “Busi- leaders, nor Black America itself, responded as ness as usual” simply will not suffice. they should have to the clear signs of an emerg- The first thing we must do is get serious ing health crisis among Black people. Few about HIV testing and treatment services. Our programs were put in place to address the HIV- passive approach to service delivery—in which a related needs of Black people in the epidemic’s network of services is created, with the expecta- early years. tion that people who need the services will find The History of the AIDS Epidemic in Black America, 2011 7 them, let alone use them—must urgently give tion work, Black Americans need to become way to a seamless, more proactive approach. We treatment-savvy, understanding the value of need to aggressively market HIV testing and early testing, collaborating with their doctors to treatment, make it easy for people to use needed address their health needs, taking care to avoid services, and create a variety of incentives for drug resistance if they are infected, and standing both patients and providers to maximize utiliza- up against stigma and denial. tion of needed services. It’s been said that the definition of insanity We also can’t assume that patients will, is doing the same thing over and over again and or even know how to, adhere to prescribed expecting different results. Since the epidemic regimens. Most Americans, regardless of health began, we’ve tried “business as usual.” It hasn’t condition, don’t faithfully take their meds as worked in the past, and it most certainly won’t prescribed.

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