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 en­dorse­ment 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 en­gaged in rendering medical advice or profession­al services. The information provided through this publication should not be used for diagnos­ing or treating a health problem or a disease. It is not a sub­stitute for profes­sional 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 con- flicting 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. And many people living with HIV, work now. Treatment-as-prevention holds the especially those in poverty, confront real-world promise of transforming our fight against AIDS, barriers to good health. We need well-resourced, but if offers little room for failure, demanding a evidence-based programs that address patients’ level of comprehensiveness and achievement in individual needs and offer critical support for service provision that we have never achieved. treatment adherence. As AIDS enters its fourth decade, there With recent historic biomedical break- could be no more fitting tribute to the hundreds throughs, we also can’t give up on AIDS re- of thousands who have perished from this disease search. We need well-designed studies to identify in the U.S. to demonstrate that we’ve learned optimally effective methods for promoting and a lesson or two over the last 30 years. In 2011, delivering testing and treatment services. We we have an extraordinary new opportunity to must lower the per-patient costs of treatment and conquer AIDS. Only bold, wise action will get us re-emphasize the search for a cure and a preven- where we need to go. tive vaccine. We have no time to waste. Let’s get moving! The silos that have been created for preven- tion and treatment must be dismantled and Yours in the Struggle, replaced with an approach that recognizes that prevention and treatment are part of a single continuum. The historic approach to planning, funding and implementing AIDS programs—in Phill Wilson which the Centers for Disease Control has been CEO responsible for HIV prevention and testing, while Black AIDS Institute others in the Department of Health and Human Services have taken the lead on HIV treatment and care—must rapidly be replaced with a uni- fied approach with streamlined oversight and a single locus for accountability. At the level of local service delivery, the HIV/AIDS workforce is woefully undertrained. Prevention workers need to become treatment experts, while clinical set- tings need to integrate the behavioral expertise of the HIV prevention world. And last—but certainly not least—if we are serious about avoiding the pitfalls of the past, we must make massive new investments in HIV treatment literacy in Black communities. Black America needs a robust, nationwide network of Black treatment advocates and educators, who can help spread the word about the promise of HIV treatment, promote saturation testing and treatment coverage in Black communities, and help patients navigate accessing and adhering to treatment. To make treatment-as-preven- Dr. Marjorie J. Hill FORWARD We Have the Tools By Roslyn Brock and Benjamin Todd Jealous

Exactly 30 years ago this month the Centers for Disease Control and Prevention identi- fied the nation’s first diagnosed case of AIDS. Over the past three decades, HIV/AIDS has become an important focal point of our na- tional and global debate—even more so for Black communities, which are the epicenter of the epidemic in the United States.

Both the United States and Black America are experiencing a historical and urgent mo- ment, documented by this new report from the Black AIDS Institute. Thirty years after that first incident, HIV-related health disparities for African Americans remain staggering. If the United States were its own country, the epidemic in Black America would be the 16th largest in the world. In fact, Black America accounts for about 12 percent of the national population but for Enearly half of all people living with HIV. Afri- can Americans are eight times more likely to be diagnosed with HIV than whites and experience the highest rate of AIDS-related deaths. Today approximately 1.1 million people live with the virus in the U.S, including more than 500,000 Black Americans. We have reached a deciding moment. Exacerbated by our nation’s economic crisis, our national investment to the HIV/AIDS crisis continues to fall far short. Concerns over “spend- ing” are translating into fewer dollars and fewer service deliverables—while more than 8,000 Roslyn Brock, Board Chair, NAACP 10 AIDS: 30 Years Is Enuf!

ment as prevention” to pre-exposure prophylaxis. None of these interventions will be possible if our communities do not mobilize against conserva- tive threats to cut HIV/AIDS spending—and to defund health care reform. This report also asks frank questions—and offers equally frank recommendations—on Black America’s response to the crisis. A new dialogue must begin around stigma, discrimination and homophobia, which have fueled the epidemic in our community. The NAACP is engaging faith leaders to normalize the conversation about HIV/ AIDS in our churches—and we’re calling all our faith community to action. Thirty years into the epidemic and we finally may have the tools to aggressively fight HIV/ AIDS in Black America. This report by the Black AIDS Institute helps lay out the path forward.

Benjamin Todd Jealous, President and CEO, NAACP people are waitlisted for AIDS Drug Assistance Programs nationwide. We cannot balance our budgets on the backs of those most vulnerable. The report shows that major investments are needed in HIV prevention and treatment educa- tion across Black America. Blacks make up more than 56 percent of all so-called “late testers,” people diagnosed with AIDS within one year of an HIV diagnosis—a sobering statistic. Many of the states cutting back on their HIV infrastructure are in the South, which has experi- enced the nation’s highest growth in HIV/AIDS. This region is the nation’s poorest, has the highest percentage of Black residents and has seen the greatest spread of HIV among Black women. Yet as these issues threaten our nation’s progress, the HIV prevention toolbox has begun to “explode” with new prevention technology options, from aggressive anti-retroviral “treat- The History of the AIDS Epidemic in Black America, 2011 11 Dr. Beny Primm EXECUTIVE SUMMARY AIDS: 30 Years Is Enuf! The History of the AIDS Epidemic in Black America

This report by the Black AIDS Institute marks the 30th anniversary of the first official report on the emergence of the HIV/AIDS epidemic. Over three decades, AIDS has radically altered our world, reshaping entire regions of the world, changing people’s relationship with their own sexuality, dramatically accelerating social and cultural change, and producing some of the most important scientific advances of the last century. No single report can possibly address all Looking Back: the various ramifications of the epidemic’s first 30 years, and this one certainly does not attempt 30 Years of AIDS to do so. Rather, this report aims to provide a degree of context to our understanding of Although June 1981 is typically assigned as the epidemic, using the 30th anniversary as the start of the global AIDS epidemic, marking an opportunity to reflect on what we have the publication of the first official report by the experienced and to understand both the Centers for Disease Control and Prevention, HIV challenges and the opportunities that will face had existed long before 1981. The history of AIDS us in the future. is one of extraordinary personal and collective The report includes a brief historical courage and vision, as well as one of hysterical overview of the first 30 years of AIDS, fear, ignorance, official apathy, and missed op- including a timeline of key events and a report portunities. card for the American presidents who have From what originally (and erroneously) ap- Toverseen our national response. Personal peared to be a problem concentrated among gay essays explore some of the ways that AIDS men in urban populations in the U.S., AIDS has has affected both our world at large and our grown into a global phenomenon and one of the own individual life experiences. Looking to most serious health challenges facing our world. the future, the report profiles current and In the U.S. alone, nearly 600,000 people have died emerging leaders in Black America’s response of AIDS, with more than 60 million infections to AIDS, includes HIV-themed essays from having occurred worldwide. 30 people under age 30, and highlights major Contrary to popular belief, AIDS has dis- new scientific advances that may hold the key proportionately affected Black America since to eventual efforts to end AIDS. The report the very beginning of the epidemic. Today, Black ends with a series of urgent recommendations America represents nearly one-half of all people to ensure that this historic moment of living with HIV in the U.S. and nearly half of all opportunity is not wasted. new HIV infections. Black people in the U.S. are 14 AIDS: 30 Years Is Enuf!

more than seven times as likely to become newly vent new infections, which have been impeded infected with HIV as their white counterparts. by prevailing discomfort with issues of sexuality Although a handful of municipalities and drug use. For example, a mammoth body of began responding to AIDS in the early 1980s, evidence has long demonstrated the effectiveness the federal government was slow to the fight, in of needle exchange programs in reducing HIV large measure because it was perceived that the transmission as a result of drug use, but until epidemic did not imperil “normal” people. Only very recently federal funds could not be used to in 1987 did President Reagan, under whose watch support this life-saving approach. This has had AIDS first emerged, officially address AIDS. -Con particularly devastating consequences in Black gressional AIDS champions spearheaded passage America, which accounts for 55 percent of all of the Ryan White CARE Act and the Americans people living with HIV acquired as a result of with Disabilities Act in 1990, which provided injection drug use. targeted funding for HIV care and treatment and Other factors also inhibit optimal use of barred HIV-related discrimination, respectively. scientific knowledge to fight AIDS. For example, The domestic AIDS response gathered steam while Black America has certainly benefited under President Clinton, who supported robust from treatment breakthroughs, racial and ethnic funding increases and oversaw the launch of the disparities in HIV-related medical outcomes have Minority AIDS Initiative, but it subsequently lost actually widened during the HAART era. Key energy under the second President Bush, who factors that impede favorable medical outcomes nevertheless exhibited vision by pushing for U.S. among Black people living with HIV include late leadership in the fight against AIDS in Africa. diagnosis of HIV infection, inadequate health Under President Obama, America launched care access, discontinuity of care, and a high its first comprehensive, target-driven National prevalence of conditions that interfere with treat- HIV/AIDS Strategy; repealed many of the most ment adherence. problematic national AIDS policies (such as Since the epidemic began, communities the prohibition on federal funding for needle led the way in the AIDS fight here in the U.S. exchange program); and enacted sweeping health Although the earliest community-based AIDS care reform legislation. organizations were founded in largely white gay AIDS has resulted in major scientific break- communities, Black America also responded to throughs. In addition to early epidemiological in- the epidemic. Several organizations dedicated to vestigations that rapidly characterized the modes the fight against AIDS in Black America—such of HIV transmission and laboratory testing that as the National Black Leadership Commission on isolated HIV, U.S.-funded research has resulted AIDS and the Balm in Gilead—were founded in in critical advances in methods to prevent and the 1980s. More recently, leading national Black treat the disease. Especially noteworthy is the political, civic and cultural organizations have development of Highly Active Antiretroviral become engaged in AIDS work. Therapy (HAART) in the mid-1990s, which has Evidence suggests that awareness of, and dramatically reduced AIDS deaths in the U.S. concern about, AIDS is higher in Black America and is beginning to do so in low- and middle- than among other racial and ethnic groups. income countries, where drugs have only become However, media interest in AIDS has sharply available in the last several years. In addition, declined, with the percentage of Black Americans implementation of proven prevention methods who report hearing a lot about AIDS in the last has reduced the number of infants newly in- year falling by nearly half from 2006 to 2009. fected with HIV by more than 90 percent since The essays included in this report vividly the early 1990s. These advances are continuing, illustrate the epidemic’s impact on individuals with several important new prevention methods and communities. Among those diagnosed in having emerged toward the end of the epidemic’s the epidemic’s early years was the Founder and third decade. HIV testing technologies have also CEO of the Black AIDS Institute, Phill Wilson. greatly improved, including the development of In his essay, Wilson recalls the many friends and rapid tests, home-based tests, and oral technolo- loved ones lost to AIDS, his own struggle to stay gies. healthy, and the reasons why he left the business Far too often, however, scientific learning has world to become involved in the fight against not been put to effective use. This has especially AIDS. proven to be true with respect to efforts to pre- The report also includes a summary of The History of the AIDS Epidemic in Black America, 2011 15 key findings from a consultation that the Black business. Historically, the approach to HIV AIDS Institute sponsored for several long-term service delivery has been rather passive, building survivors of HIV infection on May 21, 2011. services but largely leaving it to those in need to Telling their stories and how AIDS has affected use them. However, for treatment-as-prevention them, these long-term survivors describe what to be effective, it will be necessary to achieve sat- their lives were like in 1981, when they first heard uration coverage of early HIV diagnosis, ensure about AIDS, how they are experiencing the pro- rapid linkage to care and early initiation of treat- cess of aging with HIV, how surviving with AIDS ment for all who test HIV-positive, and achieve has opened new opportunities, and the greatest extremely high rates of treatment adherence. In achievements and biggest disappointments in the the absence of such a high level of success, we are AIDS response. These stories capture both the likely to continue along the current course, with extraordinary wisdom and resiliency of people an extremely large number of incident infections who have lived with this disease for 25 years or even in the presence of theoretically universal more, and they underscore how the legacy of availability of HAART. missed opportunities in the fight against AIDS Closing racial and ethnic disparities in HIV- continues to undermine efforts to combat related health outcomes will demand major new the disease. investments in treatment literacy and advocacy programs in Black communities. Although Black people are more likely than other groups to be Looking Forward: Building on tested for HIV, they are also disproportionately represented among people who test HIV-positive Our Successes, Seizing New late in the course of infection. With sharply Opportunities higher risk of being exposed to HIV than other groups, Black Americans need to achieve testing s a new decade in the AIDS fight rates that are far higher than current rates. Satu- dawns, prospects have never been ration testing in Black communities will never brighter for an actual end to the come about, however, unless Black Americans are epidemic. In 2010, a South African fully aware of the benefits and availability of A HIV treatment. research team reported results from the first study to find that a vaginal microbicide was Concerted efforts are also required to ad- effective in reducing women’s risk of becom- dress the access barriers and other factors that ing infected. Results from a separate study impede favorable health outcomes in Black com- also found that pre-exposure prophylaxis munities. Robust advocacy programs need to be significantly reduces the risk that gay men will in place throughout Black America to help people become infected, with especially strong protec- who test HIV-positive to navigate complex care tion seen in men who carefully adhere to the systems, to remain engaged in care, and to obtain daily prophylactic regimen. the supportive services needed to adhere to treat- In May 2011, it was announced that a ment regimens. federally-sponsored trial found that early anti- In working to achieve substantially greater retroviral therapy reduced the likelihood of HIV success in the AIDS response in Black America, transmission by 96 percent in comparison to later leadership will be critical. This report profiles initiation of treatment. These results provide the leading figures in the AIDS response in Black most emphatic evidence yet that antiretroviral America, including leaders in government, tradi- treatment is a critical component of effective tional Black institutions, AIDS advocacy, and HIV prevention. the media. Altogether, these recent results suggest that The leadership of young people will be it is reasonable—indeed, imperative—for us to especially critical to future success. In addition to begin thinking about an “end game” for AIDS. highlighting the leading lights of the AIDS world However, it’s equally critical that we acknowledge in Black America, this report also notes up-and- how many major opportunities we have failed to coming Black leaders. seize over the course of the epidemic. The report also includes essays from 30 indi- Capturing the potential of treatment-as- viduals under age 30. In some cases, the authors prevention and other new prevention technolo- of the essays were infected as infants and have gies will demand radically new ways of doing lived with the disease for a long term. In other 16 AIDS: 30 Years Is Enuf!

cases, AIDS became a part of their lived reality Sustain and strengthen the national when they reached adolescence or AIDS response to capitalize on historic early adulthood. new opportunities to end AIDS. The essays by young people highlight the n Maintain and increase funding passion, insight and commitment of Black youth for AIDS. to continue the AIDS fight. Some of the essays n Take immediate steps to eliminate all are provocative, calling for new ways of dealing AIDS Drug Assistance Program waiting lists. with AIDS in Black America. Others highlight n Ensure that AIDS funding follows the epi- especially vulnerable populations, such as home- demic by targeting spending to those who need it. less gay youth, or groups that often fail to garner n Fully implement the Affordable much attention in the AIDS discourse, such as Care Act. HIV-positive heterosexual men. One young man n Take immediate steps to introduce new describes his experience of testing HIV-positive, prevention tools. while a separate essay by his twin sister recalls n Invest in operational research to inform both her concern when her brother told her of his implementation of innovative new programs to infection as well as her admiration of his decision capture the potential of treatment- to devote himself to HIV work. A popular televi- as-prevention. sion personality explains why he decided to use n Continue and strengthen investments in his public platform to help educate people HIV prevention and treatment research. about AIDS. Perhaps above all, these essays describe the Create a single, comprehensive human stakes of the choices that key decision- service continuum for HIV. makers and Black leaders will make in future n Merge the federal response into a truly years in the fight against AIDS. “My struggle has unified approach, integrating prevention and taught me that—as a woman—I am the architect treatment with streamlined reporting as a single of my destiny,” writes one 27-year HIV-positive focus for accountability. Black woman. “HIV shattered my dreams but it n Planning for treatment and prevention also helped me rebuild them.” Marking a major services must be merged at the local level. historical landmark, this report by the Black n Innovative operational funding and AIDS Institute is dedicated to the belief that we capacity-building support should encourage can prevent HIV from shattering more lives and cross-fertilization of expertise and best practices simultaneously ensure that those living with the among local service providers. disease have the means to thrive. n Health care providers should be ad- equately reimbursed for a comprehensive array of prevention interventions, including HIV testing Recommendations and counseling as well as diverse uses of antiretrovirals. for Action n Monitor HIV results. After 30 years, it is time to get truly serious Pursue innovative strategies to about ending AIDS. Now, for the first time, market and promote HIV testing we actually have the tools to move to the “end and treatment. game.” To this end, the Black AIDS Institute of- n Undertake mass marketing campaigns to fers the following priority recommendations: promote HIV testing and treatment. Build strong and durable n Mandate that all testing providers have treatment capacity in Black strong and demonstrated links with HIV treat- communities. ment settings. n The offer of a voluntary, confidential HIV n Make major investments in HIV treat- test should be made routine in a range of health, ment science education in Black communities. educational and service settings. n Create a national network of AIDS treat- ment advocates in Black America. n Establish a national network of HIV cen- ters of excellence in Black communities. The History of the AIDS Epidemic in Black America, 2011 17

Ensure strong leadership on AIDS–nationally, and especially within Black America. n President Obama should deliver a major address specifically dedicated to the fight against AIDS. n Every Black institutions in the U.S. must develop and implement an AIDS strategy. n Cultivate future AIDS leaders. Willis Edwards The History of the AIDS Epidemic in Black America

When the Centers for Disease Control and Prevention issued its first report on mysterious clusters of profound immune suppression among gay men in Southern California in June 1981,1 it was believed that the era of pandemic infectious disease had passed. At that time, most health experts believed, the principal health challenges that the U.S. would face would be rising rates of chronic diseases associated with affluence and increasing life expectancy.2 AIDS scrambled all such expectations, and the certainty that additional surprises are in store many more. AIDS prompted many Americans in future years. In the case of AIDS, ongoing to rethink sexuality at a time when conventional vigilance is not just wise; it is essential. wisdom held that the results of the so-called “sexual revolution” of the 1960s were permanent. AIDS gave rise to a host of patient empowerment The Epidemic Itself movements for different diseases, prompted ma- jor changes in processes for testing and approv- lthough 2011 marks the 30th an- ing new drugs, and resulted in the largest federal niversary of the first official report, program ever implemented for managing a the history of AIDS is actually much single disease. longer. Testing on stored plasma The epidemic has also had dramatic effects A samples indicates that individuals were in- in Black America, which has been more heavily fected with HIV in Africa as early as the 1950s.3 affected than any other racial or ethnic group in Epidemiological estimates by UNAIDS sug- Wthe developed world. Thirty years after the first gests that considerable HIV transmission was report on AIDS, that challenge continues for occurring in the U.S. before 1981, although the Black America, which accounts for 12 percent of epidemic remained unrecognized. the national population but for nearly half of all HIV is a global phenomenon. As of Decem- people living with HIV. ber 2009, an estimated 33.3 million people were This chapter describes the epidemic’s impact living with HIV, including 2.6 million people on our world, telling the history of AIDS from newly infected in 2009.4 Since the beginning of different vantage points and particularly focusing the epidemic, UNAIDS estimates that more than on America’s domestic epidemic and its effects 60 million people worldwide have been infected on Black America. Unfortunately, while progress with HIV and more than 25 million have died of has been made, we appear nowhere near the end HIV-related causes. point of the epidemic’s history. Indeed, the many Because public health surveillance systems twists and turns in the last 30 years underscore were much stronger in high-income countries 20 AIDS: 30 Years Is Enuf!

in the early 1980s than in the developing world, itself, as the number of new infections among HIV in its early years was thought primarily to drug users sharply declined while HIV incidence be a problem in North America and Western among gay and bisexual men began a steady Europe, with heterosexual transmission in Cen- increase that continues still.15 tral Africa first documented in 1983. In reality, Throughout the epidemic, HIV has over- HIV had been spreading rapidly in sub-Saharan whelmingly affected men. However, for a brief Africa for years before the disease was actually moment in the late 1980s, the number of new recognized in the region. Within a few years, it infections among women approached the num- would become plain that most people living with ber of incident infections among men. Thereafter, HIV resided in low- and middle-income the gender divide among people newly infected African countries. widened again, in large measure due to the steady In the U.S. alone, nearly 600,000 people had increase in incident infections among gay and bi- died of AIDS as of December 2009.5 AIDS deaths sexual men over the last two decades. Currently, in the U.S. peaked in 1994, when 47,636 people men now represent nearly three out of four new with AIDS died.6 Globally, AIDS deaths peaked infections.16 much later (2004), largely due to the fact that life- preserving antiretroviral drugs were not available in most low- and middle-income countries until Public Awareness recent years.7 The magnitude of the epidemic in the U.S. ith the risks associated with has progressively increased as the epidemic has HIV now firmly ingrained in the evolved. The estimated number of people living public consciousness, one might with HIV rose from 400,000 to 450,000 in 1984, be excused for believing this had to 650,000 to 900,000 in 1992,8 to 1.1 million W always been the case from the epidemic’s initial in 2006.9 An estimated 56,000 people are newly appearance. Sadly, America wasted nearly a infected each year in the U.S., a rate considerably decade in the fight against AIDS, allowing the higher than was believed only several years ago.10 disease to grow into a full-fledged health crisis. The epidemic in the U.S. has undergone pro- The AIDS epidemic emerged while President found changes over time. In the late 1980s, Black Ronald Reagan was in power. With the excep- people surpassed whites in the annual number tion of a brief mention of AIDS research at a 1985 of new HIV infections.11 By 2006, Black people press conference, Reagan never addressed the were 7.3 times more likely than whites to become AIDS crisis until 1987. By the time Reagan for- infected.12 mally addressed the AIDS challenge, hundreds One of the enduring myths of the epidemic of thousands of Americans had become infected is that AIDS almost exclusively affected white gay and the number of AIDS deaths was men in the U.S. during its early years. In real- increasing exponentially. ity, AIDS had a disproportionate effect on Black In the early years, AIDS was typically America from the very beginning. Represent- depicted as a uniquely “gay plague.” Indeed, the ing just 12 percent of the U.S. population, Black first official name for the disease was Gay-Related people accounted for 26 percent of all AIDS cases Immune Deficiency (GRID) syndrome. After reported in 1981-1983.13 it became clear that injection drug users and Outside sub-Saharan Africa, only four coun- hemophiliacs were also vulnerable to the disease, tries have HIV prevalence as high as the con- the name was changed to Acquired Immune servative estimates of the HIV burden in Black Deficiency Syndrome. America. Indeed, were Black America its own Typical of the early media coverage of AIDS country, it would have the 16th largest number of was a December 1985 article in Discover maga- people living with HIV, with levels of infection zine, which contrasted the supposedly “vulner- rivaling numerous countries in Africa.14 able rectum” with the “rugged vagina.” Accord- Epidemiological patterns in the U.S. have ing to the article, “AIDS isn’t a threat to the vast changed since AIDS first appeared. In the late majority of heterosexuals . . . It is now—and is 1980s, the number of incident infections among likely to remain—largely the fatal price one can injection drug users surpassed the number pay for anal intercourse.”17 among men who have sex with men. Beginning The fact that such assertions flew in the face in the early 1990s, however, this pattern reversed of scientific fact did not diminish their impact The History of the AIDS Epidemic in Black America, 2011 21

What is AIDS? By Chris Brownlie

t is a whimper, and a scream. It is the by it’s swollen lining. It is changing your brush of a branch on the screen of your pants again because at the critical moment window, a rustle, a rattle. It is being in you couldn’t tell the difference between gas your center, and being so far from your and excrement. It is changing your sheets Icenter that you don’t know if you’ll ever find because the stench woke you up. your way back. It is relentless. It is daunting, a It is anger, weird, quirky anger that great mountain which you MUST climb. knocks you off your pins and makes you It is sweating, bleeding, puking and doubt your own judgments. It is not know- shitting in ways you never have before. It is ing the difference between your needs and pain you never imagined. It is fear you never your desires. It is being disoriented by the dreamed. It is grief you never guessed. It is force of the great emotional wind which is the frenzy of medicine. It is too many visits constantly blowing within you. to the outpatient clinic, the two days in the It is the fighting back. It is the building hospital for tests, the weeks for the treat- of places to care for the living and for the ments. It is the doctor’s kindness, the nurse’s dying. It is courage, it is honor, it is integrity. caring, the phlebotomist’s apology. It is the It is people joining forces in a time of great doctor’s prodding, the nurse’s poking, the need. It is hope, it is sharing the burden. It is phlebotomist’s piercing. people caring for their own and finding love, It is the manic need to make your mark, and surviving, and believing in the future to leave some worthwhile trace of yourself even when we are hurting more than we behind. It is shattering denial every time have ever hurt before. the symptoms of another infection begin to It is bearing the unbearable, enduring mount. It is the loneliness, like the whistle of the unendurable, and hoping in the face of a train passing in the dark night of your soul. hopelessness. It is the haunted look in your It is caring for your friends in a way you lover’s eyes when a new crisis begins. It is never have before. Intimate ways, horrible mourning together. It is mourning alone. It is ways, ways that take more of your love than holding him in your arms and in your heart. you knew you had. It is being there when the It is crying because your heart is breaking coma comes, and it is begging in your heart over leaving him behind. It is the sweet pain for some little piece of mercy. It is going to of knowing that you are dying, and the over- the church, or the park, or the beach to say whelming sadness for those who will kiss farewell and Godspeed, beloved one. you into their dreams. It is waking up wet, so wet, wetter than It is a wail. It is a howl. It is beyond our you were at birth. It is having your skull split grasp. It is awful. It is awesome. It is AIDS. on public perceptions. As early as 1983, CDC had Although facts would rapidly overtake the documented the transmission of HIV during idea that AIDS was only a “gay problem,” the heterosexual intercourse.18 By 1983, a full-fledged perception of AIDS as a gay disease would un- epidemic of heterosexually transmitted HIV had dermine efforts to increase awareness of the full been confirmed in Africa.19 Between 1984-1987 spectrum of risks associated with the virus. In and 1988-1990, the annual number of heterosex- particular, popular misconceptions about HIV- ually acquired HIV infections in the U.S. more related risks long impeded efforts to increase than doubled, and today heterosexual transmis- AIDS awareness in Black America. sion is second only to male-male sex as a leading The strategies used by public health authori- source of new infections.20 Black people account ties to track the epidemic often compounded for more than 64 percent of all cases of hetero- these difficulties. Beginning in the early 1980s, sexually acquired HIV in the U.S. most state and local health departments kept 22 AIDS: 30 Years Is Enuf!

Still Standing After All This Time by Phill Wilson

n 1981 I was living in Chicago. I had a transfer to California. My boss said they finally finished school. I had a job that weren’t doing any transfers. We were in the my banker mother was proud of. “Phill middle of the breakup of the Bell system. I is a marketing director with AT&T,” she said to him with the bravado only a 25-year- Iwould tell her friends. And she had every old full of himself could muster, “You don’t right to be proud. She and my truck driver understand. In two weeks the movers father had made tremendous sacrifices to are coming to move me to California. The make sure I got a great education. I lived on question is, when I get to California, will I the 24th floor of Doral Plaza, a luxury apart- work for AT&T or MCI. If I were you I’d prefer ment building on the Chicago’s Gold coast— to have me on my team rather than the Tom Joyner was one of my neighbors. It was competition.” Three weeks later, our car was a long way from the Altgeld Gardens, the packed and we were on the road. housing project on the south side of Chicago Shortly after arriving in California, Chris where I grew up. I was 25. Earlier that year, I and I attended a community meeting about discovered that I was gay. And, I was in love. this strange new disease at the Department Then it happened. of Water and Power in downtown Los An- His name was Chris. He was 30. We met geles. By then, it was called Gay Related Im- at the Club Baths. I had never met anyone mune Deficiency Syndrome (GRID). By then, like him. He had this mane of Black curly hair. we had already lost our first friend, Armando, He was skinny with bow legs—it was 1981 a member of our softball team back in Chi- and skinny was in. He was funny, smart and cago. Some of our friends were already sick. I a communist. Needless to say, our politics think we knew that Chris was already sick but could not have been more different. But he we couldn’t think about that. I needed to feel made me feel safe. When I was with him I safe for a little while longer and he couldn’t had no fear. bear the thought of leaving me alone. Chris had this cough that would not go Chris and I started Black Is More Than away. He was always skinny, but he started Beautiful, a small giftware manufactur- to lose weight. He came home from a doc- ing business and started to volunteer, give tor’s appointment one day. “So, what did he money, and pretend to not notice that Chris say?” I asked. “I have swollen lymph nodes.” was always sick. As the years progressed He responded. “OK, but what about the more friends grew ill and we learned a virus cough and the trouble breathing?” I asked. caused AIDS. In 1986 California placed Prop- “Well, he wants to do a lymph node biopsy. osition 64—a proposal calling for the forced There’s this thing going around among gay quarantine of all people with AIDS—on the men in New York and Los Angeles that has election ballot. Both Chris and I volunteered something to do with swollen lymph nodes,” to work for committees opposing the pas- he said. “Well, I have swollen lymph nodes.” sage of Prop 64. We decided that I would I said. He looked weird, worried. “Maybe, I take a leading role in the main “No on 64” should have my lymph nodes biopsied too? Campaign. Chris would focus on the more We can do it together.” I wanted to make him radical “Stop AIDS Quarantine committee.” feel better. The biopsies came back abnor- We defeated Prop 64, but by the time mal. That’s all they could tell us. of the elections, Chris was really sick. My job Chris and I found ourselves in Los in our company was to travel around the Angeles in the spring of 1982. By the end country doing the marketing. Given Chris’ of the winter of 1981, I was over Chicago failing health and the amount of time we winters. I went into my office to request found ourselves working on the ballot initia- The History of the AIDS Epidemic in Black America, 2011 23

tive AIDS related projects, we decided to the wins and the misses. I’ve lived with AIDS close down our giftware business. I went to almost my entire adult life. I don’t remember work for Stop AIDS Los Angeles. We went on what it was like not to have HIV. to co-found the AIDS Hospice Foundation, We are at a deciding moment. There which eventually became the AIDS Health- has been an avalanche of scientific care Foundation. breakthroughs in the last two years— In 1987, I became concerned that AIDS microbicides, new antibodies, Post-Exposure was too easily being ignored in the Black Prophylaxis (PEP), Pre-exposure Prophylaxis community. By then, it was clear to me. AIDS (PrEP), viral mapping, vaccine development, was not just about white gay men. Black “treatment as prevention.” In addition, we people were already 25 percent of the new finally have healthcare reform—of sorts— AIDS cases. In 1986, 50 percent of the AIDS and a national HIV/AIDS strategy in this cases among women in the United States country. We have the tools to end the AIDS were Black. AIDS was never just a white gay epidemic. We owe it to Chris, and Reggie, disease. There was no place for Black Gays and all of our friends and loved ones lost to and Lesbians to go to talk about AIDS and this disease to use these tools to put an end get the skills needed to build the kind of to this thing. We owe it to my nephews and community infrastructure we needed to nieces, to Kali Villarosa, a 14-year-old girl in fight the disease. In an effort to change that, Brooklyn who is already an AIDS activist, and we founded the National Black Gay and Les- young people everywhere to not leave them bian Conference and one year later the Black with this mess. Gay and Lesbian Leadership Forum (BGLLF). I’m scared. Not of the virus any more. Chris died in 1989. As he had done from Actually, I was never really scared of the dis- the first day I met him, he took care of me. ease. I always figured my dying would take He made sure I was ready before he went. He care of itself. It didn’t need my help. My job made sure I had time to figure out who I was was to take care of living. I’m afraid we won’t and what I was meant to do. do our part. I’m afraid, when asked, “What I’ve seen a lot over the last 30 years. I’ve did you do during the plague years?” The been there every step of the way. I’ve seen answer will be not enough. track of AIDS diagnoses rather than positive HIV study by CDC, 46 percent of Black gay men were test results. Because roughly a decade or so typi- found to be HIV-infected in 2004-2005.21 While cally transpires between a new HIV infection and this and other comparable studies dramatically a diagnosis of AIDS in the absence of treatment, increased public awareness of the extraordinary these AIDS case reports failed to detect emerging HIV burden among Black gay men, this spike in infection trends. Thus, the dramatic rise in new attention occurred only after tens of thousands of infections among Black Americans in the 1980s men had become infected. only became apparent the following decade when Courageous leadership has played an impor- these infection patterns were reflected in AIDS tant role in building public awareness. Even while case reports. belonging to an administration for which AIDS These weaknesses in epidemiological moni- barely registered as a priority, former Surgeon toring proved especially damaging to efforts to General C. Everett Koop took the initiative to call attention to HIV-related risks experienced by develop an official report on AIDS. In 1988, Koop Black gay and bisexual men. Even as AIDS was sent an AIDS informational mailing to every regarded as a primarily “white gay” disease in household in the U.S. the 1980s and early 1990s, infection rates among Leaders on AIDS emerged from unexpected Black gay men were spiraling out of control. Only quarters in the epidemic’s early years. Especially when CDC and various state and local health noteworthy was the role played by the actress departments sponsored HIV surveys of gay and Elizabeth Taylor, who worked tirelessly on behalf bisexual men did the disproportionate risks to of the American Foundation for AIDS Research Black gay men become plain. In one five-city (now amfAR) to draw attention in the 1980s to 24 AIDS: 30 Years Is Enuf!

the rapidly expanding crisis. Revealingly, Taylor had little success in the 1980s in recruiting other Scientific Knowledge Hollywood celebrities to contribute to the About HIV AIDS fight. The AIDS-related death of actor Rock Hud- erhaps more than any other major son in 1985 shocked the country and dramati- health problem, AIDS highlights the cally increased AIDS awareness. A similar effect extraordinary potential of scientific resulted from the AIDS diagnosis in 1988 of Pknowledge. Unfortunately, scientific tennis great Arthur Ashe, one of only two Black knowledge has not always been put to use in men to win a Grand Slam tournament. Before his responding to AIDS. death in 1993, Ashe established a private founda- When AIDS first emerged in the early 1980s tion to fight AIDS. as a frightening new disease, CDC investiga- Public awareness of the AIDS crisis, espe- tors rapidly determined how the disease was 24 cially in Black communities, underwent a sea transmitted. CDC was swiftly able to assure the change in 1991, when basketball great Earvin public that transmission through casual contact “Magic” Johnson announced that he had tested was impossible, although misperceptions regard- HIV-positive. After his announcement, HIV test- ing the disease would endure. ing rates in Black communities skyrocketed, as In 1983, French scientists isolated HIV as many Black Americans awoke to the reality that the cause of AIDS. Two years later, the first test AIDS was not only a problem for gay men. The to diagnose the disease was licensed. Over the Magic Johnson Foundation continues to contrib- epidemic’s three decades, HIV testing technology ute to the AIDS fight, providing HIV medical would continually improve, permitting infection services to more than 1,200 people in communi- to be diagnosed within days or weeks of initial ties of color, testing nearly 30,000 people, and exposure. One important result of these advances providing grants to community organizations. was the near-eradication of HIV transmission Over the years, complications related to as a result of blood transfusions or other blood AIDS would claim the lives of leaders from all products, a major source of infection in the walks of life in Black America, bringing growing epidemic’s early stages. Improvements in testing attention to the health threat in Black communi- technologies include the development of rapid ties. Black luminaries who died of AIDS-related tests and the emergence of oral testing. causes included ABC News anchor Max Rob- Progress in treating HIV was too slow to save inson, dance legend Alvin Ailey, gospel record- millions worldwide, but advances have neverthe- ing artists James Cleveland, and writer Essex less been steady. In the epidemic’s early years, Hemphill. the primary cause of HIV-related death was As the epidemic’s third decade draws to a pneumocystis pneumonia. A common pathogen close, evidence indicates that AIDS awareness that poses little risk to people with healthy im- is highest in Black America. While Americans mune systems, pneumocystis deprives the body overall do not rate HIV as one of the country’s of oxygen in severely immune-compromised five most serious health problems (according individuals. An early advance in reducing the to 2009 survey data), Blacks consider HIV the risk of HIV-related death was the development second most serious health problem, following of pneumocystis prophylaxis with pentamadine. cancer. Blacks are significantly more likely than Since that time, other prophylactic and therapeu- Americans as a whole to fear contracting HIV, tic developments have occurred, rendering death and 80 percent of Black parents of children 21 as a result of pneumocystis rare in the U.S. of younger worry that their child may become During the early years of AIDS, government infected.22 researchers and pharmaceutical companies began However, there are disturbing signs that pub- testing an array of compounds for their activity lic concern about AIDS is declining. Even among against HIV. The first drug approved to treat HIV Black Americans, the most heavily affected racial infection itself was AZT, or zidovudine. AZT or ethnic group, the percentage of people who therapy produced favorable early results in many report having heard a lot about HIV in the past patients, although resistance tended to develop year fell from 62 percent in 2006 to 33 percent in quickly in most patients. In 1993, a major inter- 2009.23 national study found that early initiation of AZT did not extend life for people living with HIV.25 The History of the AIDS Epidemic in Black America, 2011 25

After the approval of AZT, additional anti- base on prevention of mother-to-child transmis- retroviral drugs were licensed by the Food and sion, identifying optimally effective regimens and Drug Administration for the treatment of HIV. approaches. As a result of these breakthroughs, Like AZT, these antiretrovirals attacked various the number of infants who become infected with stages of the viral replication process. However, HIV each year in the U.S. has fallen by more than also like AZT, use of these drugs, either singly or 90 percent since the early 1990s.31 These advances in combination with another drug, was rapidly have had particularly beneficial effects in Black overwhelmed by resistant virus. communities, as Black women account for more In the mid-1990s, a transformative event than 60 percent of all women living with HIV in occurred. An entirely new class of antiretroviral the U.S. drugs, protease inhibitors, emerged. By com- The knowledge horizon for HIV preven- bining multiple classes of antiretroviral drugs, tion continues to expand. In 2010, researchers in doctors were able to attack the viral replication South Africa found that a vaginal microbicide process from several angles, sharply slowing the containing an antiretroviral reduced the risk that emergence of resistance. For those able to obtain a woman would become infected during sexual the drugs, combination antiretroviral therapy, or intercourse by 39 percent.32 Also in 2010, re- Highly Active Antiretroviral Therapy (HAART), searchers reported that a daily oral combination represented a lifeline. In the U.S. and other high- of the antiretrovirals emtricitibine and tenofovir income countries, AIDS death rates plummeted reduced the risk of HIV acquisition among gay as a result of the new medicines. As HAART and bisexual men by 44 percent, with significant- was expanded to developing countries in the last ly higher protection found among people who decade, similar results have been achieved.26 carefully adhered to the daily regimen.33 Black America has benefited from treat- In recent years, there have also been emerg- ment breakthroughs but not to the same ex- ing signs that treatment itself plays an important tent as whites. Indeed, evidence indicates that role in preventing new infections. By reducing Black-white disparities in HIV-related medical viral load, often to the point that it becomes outcomes have actually widened in the HAART undetectable under standard tests, antiretroviral era.27 The sub-optimal HIV outcomes experi- therapy is believed to reduce the infectivity of enced by Black Americans stem from a combina- people living with HIV. In San Francisco, a 40 tion of late diagnosis of HIV, inadequate health percent drop in community viral load earlier this care access, discontinuity of care, treatment decade was associated with a 45 percent reduc- adherence challenges, and a higher prevalence of tion in new HIV infections.34 The prevention other serious co-morbidities.28 potential of antiretroviral therapy was under- Scientific knowledge about preventing HIV scored in 2011, when NIH study results found has also expanded since the epidemic first ap- that early treatment reduced the likelihood of peared. An impressive body of data has emerged transmission within serodiscordant couples by regarding effective prevention strategies, includ- 96 percent.35 (A separate article appears in this ing behavior change programs, sex education for report highlighting the importance of these new young people, condom promotion, and needle research findings.) exchange and other measures to prevent drug-re- Progress towards the development of a lated transmission.29 Unfortunately, squeamish- preventive vaccine has been slow yet real. After ness about human sexuality and drug use has in- disappointing results from large-scale trials of hibited these tools from being used as effectively candidate vaccines, a large randomized trial as they could be. According to a national survey in Thailand of a combination vaccine found of more than 10,000 gay and bisexual men in the evidence of modest efficacy.36 Although the level U.S., only 15 percent have ever participated in an of efficacy found in the Thai trial is not believed individual program to build sexual risk to warrant steps toward licensing the vaccine, reduction skills.30 the results nevertheless indicate that vaccination Beginning in the 1990s, research sponsored against HIV is likely to be feasible. Identification by the National Institutes of Health found that in recent years of antibodies that appear to neu- strategic use of antiretrovirals could sharply tralize HIV has generated increased enthusiasm reduce the odds that a pregnant woman would over prospects for developing a safe and effective transmit HIV to her newborn. Over time, ad- vaccine. ditional studies have expanded the knowledge 26 AIDS: 30 Years Is Enuf!

We Have Survived Reflections of Six Long-Term Survivors

uring the darkest days of the epidemic—the 1980s and early 1990s—a positive HIV/AIDS diagnosis often included a prognosis of just months to live. Yet under the era’s devastatingly adverse conditions—AZT toxicity, bouts of pneumocystis pneunonia (PCP), losing partners, friends and loved ones—some people not only survivedD but thrived. Today, many Americans with HIV/AIDS live for decades, in no small part because of their advocacy work. Infected over 30 years ago, Black AIDS Institute president and CEO Phill Wilson has had HIV/AIDS since his early 20s. In late May he moderated a virtual roundtable discussion with other Black long-term survivors, all of whom have lived with HIV for over 20 years.

Cornelius Baker Chairman of the Board, Black AIDS Institute Member of the Presidential Advisory Council HIV/AIDS Diagnosed in 1986

Hydeia Broadbent, 27 Motivational speaker Born HIV-positive in 1984

Vanessa Johnson, 53 Executive Vice President, National Association of People with AIDS Diagnosed in 1990

Jesse Milan Jr., 54 Vice President, Altarum Institute Chairman Emeritus, Black AIDS Institute HIV-positive for 29 years

Ron Simmons, 61 Executive Director, Us Helping Us Diagnosed in 1989

Rae Lewis-Thornton, 49 Pastor and Motivational Speaker Diagnosed at 23 The History of the AIDS Epidemic in Black America, 2011 27

PHILL: Who and where were you in 1981? HYDEIA: I was born HIV-positive. My JESSE: I graduated from law school that mother told me. We would speak about it at June and moved to Philadelphia. I was start- the dinner table. It wasn’t a secret. It was like ing my professional career and my indepen- being Black and being a girl. It’s something dent personal life as an openly gay man. that you know you are. VANESSA: I was 23 and had just gradu- ated with a degree in marine biology. I was PHILL: What’s the hardest part about working for the New York State Senate. getting older with HIV? RON: I was 31 and had moved to Wash- HYDEIA: Learning to handle my own ington, D.C., that August to start my doctor- medical care. That was the hardest part be- ate at Howard University. I was working on cause my mom did everything. Now, I have one of the first Black gay magazines in to fight for insurance and worry about my the country. medications. RAE: I’d just turned 20. I was doing JESSE: Knowing the virus is still in my political organizing on my college campus, body and that there is nothing on the registering students to vote and very active horizon that is going to eliminate it from my in the Free South Africa Movement. body. HYDEIA: In 1981? I wasn’t even born yet! RON: I just cannot see any negatives to PHILL: Hydeia that is exactly why it is so it. It’s such a blessing to get older and important to have you here. So that young have HIV. people can understand that some people have been involved in the epidemic from the PHILL: What’s the best part about get- very beginning—and others for literally all of ting older with HIV? their lives. HYDEIA: I love saying my age because it’s a celebration. I’m reaching a fabulous 27 PHILL: Where were you when you first this year. heard about HIV or AIDS—or as it was called RAE: I expected to be dead by now. To then, “Gay Related Immune Disorder,” or wake up in the morning and being aware GRID? that I am a part of God’s earthly plan, it’s just RAE: It was 1983 and I was working at a wonderful thing. Operation Push as an intern. At the end of VANESSA: I’m alive. They told me when each staff meeting, we would pray and Rev. I was diagnosed in 1990 that I had seven Jesse Jackson would say, “Let’s keep Keith in years. That was 20-plus years ago. our prayers.” I turned to someone and said, “Who’s Keith? And they said, “Shhh!” PHILL: What have you accomplished that After the staff meeting, I was told that you would not have been able to accomplish Keith was PUSH chairman Reverend Willie if you weren’t HIV-positive? T. Barrow’s only son, and he had AIDS. The VANESSA: Having a meaningful relation- irony was that I was already infected; I just ship with my son. Once I made up my mind didn’t know. that I was gonna live with this disease, I was VANESSA: I was working for the New able to be a mother to him rather than run York State Department of Health. I heard away from my responsibilities. about it as GRID. I was stunned because they CORNELIUS: Letting go of any fear of started showing pictures of folks who were death. Everything becomes just a full em- basically … emaciated. It was scary. bracing of the present and being in JESSE: I read about GRID for the first that moment. time in the fall of 1981. I thought it was local- RON: Once you lose that fear of death, ized in the gay community in San Francisco. life takes on a whole new meaning. I thought there was probably something JESSE: When I was informed of my going on there and I didn’t need to worry diagnosis, I never thought I would live for 29 about it. years with the virus. That is an 28 AIDS: 30 Years Is Enuf!

accomplishment. AZT, you’ll live two or three years. “ My at- RAE: God gave me a new plan. I couldn’t titude was, “I’m not looking for two or three have imagined that God would take some- years. I’m looking for 20 or 30 years.” thing as ugly as what the world has said AIDS is—and done something awesome with my PHILL: Are you on treatment? If so, life with it. what kinds? RON: I’m taking Atripla and I’ve been on PHILL: How have you survived and what treatment since 2003. would you say to others is the key to JESSE: I was in a clinical trial for 10 years. surviving HIV? That may have been a useful part of my long RAE: Letting go of the shame. The term survival. In August of 2009, I went on secret was going to kill me quicker than the triple combination therapy, Norvir, Sustiva disease. It was unbearable weight to have to and Reyataz. take medicine in the bathroom, tear the la- HYDEIA: I’ve been on different types of bels off my pill bottles—before I threw them treatment my entire life—intravenous, pills, in the trash because I didn’t want anyone all kinds of things. I take Truvada, Norvir and to see. Reyataz right now. CORNELIUS: You have to have a purpose. VANESSA: I have been off and on treat- For me, it’s been based on making sure that ment since 1990. I was in a Crixivan clinical we, as a people, get through this and enjoy trial in 1995. Now I’m on Truvada, Aprivir all the rest of life. Experiencing the gifts and Reyataz. and graces. RAE: I’m first generation AZT. I’ve been VANESSA: We’ve found ways to use our on treatment since, oh, I don’t know, 1989. anger and to project it for positive outcomes. I’m currently on Isentress, Emtriva, Norvir Many things have been accomplished and Ritonavir. towards fighting the AIDS epidemic with the PHILL: I was on the AZT clinical trial intense anger that many of us have experi- when you had to take it every four hours enced. I also had to start thinking about the [LAUGHTER]. But I am currently on Norvir, role I played in things that kept repeating Reyataz and Truvada. So, Hydeia, you and I in my life and take some responsibility and are teammates. control. HYDEIA: God allows me to survive. Just PHILL: I want to touch upon the impor- keeping myself motivated, not having anger, tance of Black people being involved in clini- not being bitter. I’ve never been angry or cal trials—from researchers to technicians bitter about having AIDS. My mom always to volunteers. told me everything that lives must die. Just RON: I have two feelings. One, it is im- enjoying my life. portant for Black people to be part of clinical PHILL: I was infected when I was 23; I trials because, given the burden we have of am now 55. I decided that my life was not the disease, whatever they come up with, we a democracy; it was not a parliamentary have to know it works for us. That was one of process. It was a monarchy, and I was king of the mistakes about AZT—that Black people it—nobody else had a vote. I had a right to were not in the original AZT trial. make every single decision and a responsibil- At the same time, given the entire ity to get the best advice that I could. If I was healthcare pharmaceutical industrial com- going to have to die on my own, then I might plex, I’m not ready to join any kind of trial. as well take control of the living process. I simply am not going to help Big Pharma RON: I decided that I was going to live make more money. They have made their my life for my life. I was diagnosed in 1989, billions and watched people die and couldn’t when the average lifespan was like six care less. I’ll be damned if they’re gonna use months. If you lived 18 months, you were re- me as a guinea pig to come up with their ally doing well. The doctor said, “If you take next moneymaker. The History of the AIDS Epidemic in Black America, 2011 29

JESSE: I think it’s important for Black to go into a very spiritual place—under- people to be involved in clinical trials. But standing that it was his time to go and I had the decision to participate should be based no control over that. It was his time to die on whether you trust the medical person not mine. recommending you for that clinical trial. If RAE: My lowest point was after my third you don’t trust that person, then I wouldn’t bout of PCP. I just knew that I was gonna do it. die. What got me through the most was a About researchers and other aspects sense of purpose for my life. I kept pushing of clinical trials, I think Black people should through the pneumonia. I could see death definitely be involved. But the fundamental stare at me in the face. But God is the keeper. question for a patient is, “Do you trust the medical provider who’s recommending Rod McCullom, a writer and television news this?” producer, blogs on Black gay, lesbian, bi- sexual and transgender news and pop culture PHILL: What were the major policy at rod20.com. “misses” over the last 30 years, the opportu- nities where we could have moved forward but didn’t? How could we have prevented many AIDS-related deaths? JESSE: We waited much, much too late to help the African American community understand that they were at risk for HIV. PHILL: Right. Black people get AIDS. RAE: Ditto. RON: Yep, I agree. HYDEIA: I agree.

PHILL: Living with HIV/AIDS can be a roller coaster. What was your lowest point and how did you get through that experience? VANESSA: I was diagnosed in 1990. That was probably the worst emotional experi- ence in my life. How did I get through it? One day at a time. My family was very instrumen- tal: They kept feeding me information that indicated that seven years could turn to 12 years, could turn to 15 years. RON: Probably when I had HIV and tuberculosis in 1996. Being in my apartment all by myself and too weak to get out of bed. Thinking that I could die and it would be days before anyone noticed. Unity Fellow- ship Archbishop Carl Bean called me and said, “You’ve been at the top of the moun- tain for a while now. It’s time for you to walk through the valley.” And it dawned on me that I really had been blessed. Now it was time for me to go through a hard part. And that really helped me hang in there. JESSE: When my late partner died. I had 30 AIDS: 30 Years Is Enuf!

President Barack Obama

sponsible for many, if not most, of the scientific Government Action to breakthroughs on AIDS. Fight AIDS By the end of the 1980s, America’s lethargic response to AIDS had become a national embar- n the epidemic’s early years, government rassment and a potential political liability for the action to address AIDS remained rare. President. Under President George H.W. Bush, With the exception of a handful of lo- the National Commission on AIDS was estab- Ical governments, such as San Francisco, lished in 1989. Assessing the national response to authorities largely watched while the epidemic AIDS, the Commission issued biting reports that rapidly worsened. In New York City, the epicen- called for greater political commitment and ur- ter of the U.S. epidemic, then-Mayor Ed Koch gent attention to the AIDS challenge.40 President refused for years even to meet with gay leaders Bush met with leaders of the National Commis- to discuss AIDS. sion but largely ignored the group’s findings and Early steps by CDC to respond to AIDS recommendations. included the establishment of an information During the administration of the first Presi- line in 1983 and an AIDS clearinghouse in 1987. dent Bush, a major achievement that transformed However, the agency did not truly begin to invest the national response to AIDS was passage in in community-based prevention programs until 1990 of the Ryan White CARE Act. The Ryan 37 the late 1980s and early 1990s. White program provides grants to hard-hit cities NIH’s early steps on AIDS were also some- and all 50 states to support care initiatives for what meager. In 1982, when new AIDS cases and people living with HIV. One of the most impor- AIDS deaths were increasing exponentially, total tant features of Ryan White has been the AIDS NIH spending on AIDS research was $8 million. Drug Assistance Program (ADAP), which contin- By way of comparison, this is half the amount ues to provide access to life-saving medicines for currently spent by NIH on research on otitis people with HIV who lack adequate health cover- media, an inner ear problem that typically heals age. Funding under Ryan White has increased 38 on its own. Since its early low-level focus on over time, reaching more than $3.4 billion in AIDS, NIH has become the world’s most impor- FY2010, including $858 million in funding tant funder for AIDS-related research, allocating for ADAP. 41 more than $3.4 billion towards AIDS research in Upon assuming office in January 1993, 39 Fiscal Year 2010. Indeed, NIH is largely re- President Bill Clinton took steps to strengthen The History of the AIDS Epidemic in Black America, 2011 31 the national response to AIDS. A White House to strengthen the country’s fight against AIDS. Office of National AIDS Policy was established, The President reinvigorated the White House and a high-level presidential advisory council was Office of National AIDS Policy, reconvened the appointed to make recommendations. Funding Presidential Advisory Council on HIV/AIDS, and for AIDS programs increased, a national effort to approved the use of federal funding for harm re- discover an AIDS vaccine was launched, and the duction programs for drug users. (The President AIDS research program at the NIH was reor- also lifted the longstanding ban on immigration ganized to increase coordination and strategic of people living with HIV, a measure discussed in focus. more detail below.) In 1998, President Clinton worked with Con- Throughout the country’s fitful three-decade gress to establish the Minority AIDS Initiative response to its domestic epidemic, one notable (MAI). MAI funneled significant new funding to feature has been the low priority accorded efforts communities of color to address the epidemic’s to prevent new infections. In 2010, only 4 percent disproportionate impact. Over the years, MAI of federal HIV-related funding was allocated to funding has risen from $166 million in 1998 to HIV prevention programs.45 President Obama’s $421 million in 2010. Although President Clinton proposed budget for Fiscal Year 2012 calls for a brought new enthusiasm to the AIDS fight, he 7.6 percent increase in funding for CDC preven- rejected the advice of his health officials and tion programs.46 refused to permit federal funding for needle ex- change programs to prevent new infections. The national response lost energy under The Mobilization of President George W. Bush. Whereas Ryan White had benefited from healthy annual increases Communities during the Clinton administration to enable the program to meet growing demand, domestic ffected communities have led the way AIDS funding generally flattened during the sec- in responding to AIDS in the U.S. ond Bush administration.42 As a result of fund- The earliest prevention programs ing shortfalls, numerous states created waiting were created and delivered by com- A 47 lists or restricted eligibility for life-saving ADAP munity volunteers in urban gay communities, and AIDS service organizations emerged in drugs. 48 One important bright spot during the second cities across the U.S. in the early 1980s. President Bush’s two terms was U.S. leadership Throughout the three decades of AIDS in on global AIDS issues. In particular, President the U.S., the empowerment of people living Bush created the President’s Emergency Plan for with HIV has remained a central feature of the AIDS Relief (PEPFAR), the largest single pro- national response. In 1983, people living with gram to tackle a specific disease. Through Sep- AIDS gathered in Denver, articulating a set of tember 2010, PEPFAR had supported antiretrovi- principles and founding what became known as ral treatment for 3.2 million people in developing the PWA Empowerment Movement. The Denver countries and averted 114,000 new infections in Principles insisted that people with AIDS were infants as a result of scaled-up services to prevent entitled to participate in all decisions affecting vertical transmission.43 their lives. These principles were incorporated As a presidential candidate, then-Senator in the mandates of the Ryan White CARE Act, Barack Obama vowed to create the country’s first which require that local planning councils for comprehensive strategy to combat the domestic HIV services include robust and meaningful AIDS epidemic. In 2010, President Obama made participation of people living with HIV. good on his promise by unveiling the National An empowered patient population radically HIV/AIDS Strategy.44 The strategy includes changed American attitudes and practices re- concrete targets for the national response, includ- garding health care. Not content to wait for new ing a 25 percent reduction in the number of new treatments to emerge from industry, communi- infections by 2015, ensuring that 90 percent of all ties banded together to lobby for increases in people living with HIV know their HIV status, federal HIV research spending, to create buyers’ and concrete reductions in HIV-related health groups to provide patients with access to unap- disparities. proved but promising drugs, and to establish President Obama also took additional steps treatment information resources to help patients 32 AIDS: 30 Years Is Enuf!

participate in their own care. People living with ing the capacity of traditional Black institutions. HIV soon became arguably the most organized This approach recognizes that unlike gay com- and educated of all patient groups, developing munities, which generally had weak community approaches that have been enthusiastically emu- infrastructures when AIDS first appeared in the lated by advocates for breast cancer and early 1980s, Black America has a robust network other diseases. of prominent political, cultural and educational With few treatment options available in organizations. For example, NAACP began to the early years of the epidemic, activists joined increase its visibility on AIDS issues in the late together to create AIDS Coalition to Unleash 1990s, with former chair Julian Bond playing Power, ACT UP. Although the group would run a particularly active role in promoting AIDS out of steam in a few years—with the exception awareness in Black America. At the 2006 Inter- of some local chapters, such as ACT UP Phila- national AIDS Conference in Toronto, more than delphia, which has remained active—it played a 20 leading figures in Black America gathered to critical role in the late 1980s in focusing national pledge greater action to fight AIDS in attention on the need for a stronger AIDS re- Black communities. search effort. Early ACT UP leaders also worked Over the last several years, the Institute has with congressional leaders during the early years worked with 16 leading national Black organiza- of the Clinton administration to redesign the tions to build their institutional focus on AIDS. country’s research and drug approval process, Each of these organizations has developed their which arguably accelerated progress toward sub- first-ever national AIDS strategies and action sequent treatment breakthroughs. plans, and hired focal points to oversee AIDS-re- Most of the early activism on AIDS was lated work. This approach benefited greatly from centered in largely white gay communities in the CDC’s Act Against AIDS Leadership Initia- New York, San Francisco and other cities. In tive, launched in 2009. The CDC initiative has 2011, many of the same organizations created in provided funding to leading Black organizations the epidemic’s early years continue to provide the to support their efforts to engage their constitu- backbone for AIDS services and advocacy, even ents in the AIDS response. though the face of AIDS in the U.S. has been transformed over the years. However, Black communities also began mo- Stigma, Discrimination bilizing in the epidemic’s early years in response to rising rates of HIV infection. Led by longtime and AIDS Hysteria activist Reggie Williams, the National Task Force on AIDS Prevention was founded in 1988 to lead ince AIDS appeared, the disease has HIV prevention efforts among Black gay men. been accompanied by an epidemic of The National Black Leadership Commission on fear, ignorance and social isolation. AIDS, founded in 1987, aimed to educate, orga- SIn part, AIDS merely followed in the nize and empower leaders in Black communities footsteps of other stigmatized diseases of the across the U.S. to lead the fight against AIDS. The past, such as cancer, syphilis and tuberculosis. Balm in Gilead has undertaken extraordinary However, the link in the public mind between AIDS and homosexuality arguably exacer- efforts to mobilize faith leaders in Black commu- 49 nities to lead the AIDS fight. bated the stigma associated with AIDS. In the These early national groups were followed by 1980s, Congress enacted legislation proposed countless community organizations across the by the late Sen. Jesse Helms to bar federal HIV U.S. that supported AIDS programs and activi- prevention funding for any program found to ties in Black communities. In comparison to the “promote” sexual activity. major AIDS service and advocacy organizations Surveys during the epidemic’s early years created by gay men in the early 1980s, many consistently detected a high prevalence of nega- tive social attitudes toward people living with Black community groups have long remained 50 poorly funded. HIV in the U.S. People diagnosed with the The Black AIDS Institute, the only national disease lost their jobs, were kicked out of their think tank specifically devoted to HIV issues homes, had their health insurance terminated, in Black America, was launched in 1999. The and were ostracized by their families. Some Institute has focused on mobilizing and build- health insurers that provided ample coverage The History of the AIDS Epidemic in Black America, 2011 33 to people with other health conditions imposed fear. As a result of the ADA, people living with onerous lifetime coverage caps for people living HIV for the first time enjoyed broad national an- with HIV. In many parts of the U.S., health care ti-discrimination protections. In particular, ADA workers refused to care for people living with nullified many of the most heinous restrictions HIV. The Ray family in Florida, with three he- imposed by private health insurers on coverage of mophiliac brothers who contracted HIV through HIV-related treatments. blood products, had their house burned and were As the epidemic persisted and more and refused admission by local schools. Ryan White, more Americans knew a person living with HIV, an HIV-positive American teenager living in negative social attitudes declined. However, they Indiana, was expelled from school because of his did not disappear. As late as 1999, one in three infection during the epidemic’s early years. Americans surveyed said they had negative feel- Unfortunately, government policies in the ings toward people living with HIV.52 Misconcep- early years often served to magnify, rather than tions about the disease and judgmental attitudes alleviate, stigmatizing attitudes toward people toward those affected continue to impede ratio- living with HIV. While generally avoiding sup- nal, effective responses to the problem. port for prevention, treatment and care programs Although there is little evidence that ho- for people living with HIV, the Reagan admin- mophobia is more severe in Black America than istration turned to mandatory HIV testing as among other racial or ethnic groups, anti-gay its principal AIDS strategy. During the Reagan attitudes in Black communities have nevertheless years, mandatory testing was implemented in served as an important impediment to a sound, a number of federal programs, including the compassionate response to the epidemic’s dis- military, the foreign service, and the U.S. Job proportionate impact on Black gay and bisexual Corps, with those testing positive deemed to be men. In particular, the discourse on the “down ineligible for service or benefits. This approach low” phenomenon, which suggested that secretly suggested to the public that people with HIV bisexual men posed a major risk of transmission were dangerous sources of infection and were to to Black women, resulted in considerable anxi- be shunned and isolated. In addition, with the ety in Black communities and encouraged the military and the U.S. Job Corps disproportion- stigmatization of Black bisexual men as danger- ately attracting Black participants, mandatory ous vectors of infection.53 Extensive studies have testing in these programs had particularly severe failed to find a link between “down low” identity negative impacts in Black America. and unprotected sex,54 although this has not In the 1980s, the U.S. implemented rules prevented the periodic appearance of sensational barring the entry of foreigners infected with HIV, and baseless media stories on the supposed dan- even though a broad range of medical and public gers of men on the “down low.” health professionals decried the discriminatory During the epidemic, waves of AIDS panic and baseless nature of this approach. In par- and hysteria have periodically washed over the ticular, the immigration restriction, which was public, undermining efforts to mitigate negative repealed only in 2010, suggested that people liv- attitudes about AIDS. Early evidence that HIV ing with HIV were dangerous sources of disease. could be transmitted by blood or blood products Ironically, HIV prevalence tended to be higher in generated widespread public anxiety and led the U.S. than in most foreign countries, theoreti- CDC to impose strict screening requirements on cally placing foreigners at greater risk of becom- blood banks. ing infected from an American citizen than A high-water mark for AIDS hysteria oc- vice versa. curred in the early 1990s, when testing suggested Early epidemiological reports on AIDS that a young Florida woman, Kimberly Berga- classified Haitians as a separate risk category.51 lis, had contracted HIV from her dentist. CDC This practice, which was eventually abandoned initially proposed an approach that some argued as baseless, deepened the social isolation of this would result in the exclusion of health care population and contributed to discriminatory workers living with HIV from medical practice, treatment of Haitian-Americans. but the agency eventually backed away from this In 1990, with the support of the first Presi- approach under heavy criticism. dent Bush, Congress passed the Americans with Over time, signs have emerged that Ameri- Disabilities Act (ADA) of 1990, which proved to cans are increasingly prepared to deal more ratio- be a watershed in the fight against ignorance and nally with HIV as a health problem. As of 2009, 34 AIDS: 30 Years Is Enuf!

53 percent of non-elderly Americans reported having been tested for HIV, including 19 percent Notes 55 who were tested in the previous year. 1. CDC (1981). Pneumocystis Pneumonia—Los With respect to Black America, there is Angeles. Morbidity and Mortality Weekly Report 5:250-252. compelling evidence that Black people have 2. aids2031 Consortium (2011). AIDS: Taking a Long- grown considerably more comfortable with AIDS Term View. Upper Saddle River NJ: FT Science Press. 3. Zhu T et al. (1998). An African HIV-1 sequence from as a health issue. Black Americans are more 1959 and implications for the origin of the epidemic. Nature likely than other Americans to discuss HIV with 391:594-597. their physician. In part, the greater comfort level 4. UNAIDS (2010). Global report on the AIDS experienced by Black Americans may stem from epidemic. the fact that Black people are considerably more 5. CDC (2011). HIV Surveillance Report, 2009. 6. CDC (1996). HIV Surveillance Report, 1996. likely to report knowing someone living with 7. UNAIDS 2010 Global Report. 56 HIV than other racial or ethnic groups. 8. Karon JM et al. (1996). Prevalence of HIV Infection in the United States, 1984 to 1992. JAMA 276:126-131. * * * 9. CDC (2008). HIV Prevalence Estimates—United States, 2006. Morbidity and Mortality Weekly Report Although much has changed since AIDS 57:1073-1076. 10. Hall HI (2008). Estimation of HIV Incidence in the first emerged three decades ago and substantial United States. JAMA 300:520-529. progress has been made, AIDS remains one of the 11. Hall et al. (2008). country’s most pressing health issues. Each year, 12. Hall et al. (2008). more than 16,000 deaths occur among people 13. CDC (1983). Update: Acquired Immunodeficiency diagnosed with AIDS. Syndrome (AIDS)—United States. Morbidity and Mortality Weekly Report 9:465-467. The fight against AIDS is especially critical 14. Black AIDS Institute (2008). Left Behind—Black to the health and well being of Black America. America: A Neglected Priority in the Global AIDS Epidemic. In 2008, the AIDS death rate for Black Ameri- 15. Hall et al. (2008). cans was more than nine times the rate among 16. Hall et al. (2008). whites.57 Despite the enormous progress made in 17. Langone J (1985). AIDS: The Latest Scientific Facts. Discover. the fight against AIDS, the disease remains one 18. CDC (1983). Immunodeficiency among Female of the 10 leading causes of death of Black Ameri- Sexual Partners of Males with Acquired Immune Deficiency cans.58 Syndrome (AIDS)—New York. Morbidity and Mortality The history of AIDS warns against compla- Weekly Report 31:697-698. cency. When CDC announced in the early 1990s 19. aids2031 Consortium (2011). 20. Hall et al. (2008). that 650,000 to 900,000 people were living with 21. CDC (2005). HIV Prevalence, Unrecognized HIV at the time, the new estimate represented Infection, and HIV Testing Among Men Who Have Sex with a substantial scaling-back of earlier estimates. Men—Five U.S. Cities, June 2004–April 2005. Morbidity and AIDS, it was believed, had begun a long, inevi- Mortality Weekly Report 54:597-601. table decline. That decline never occurred, as 22. Henry J. Kaiser Family Foundation (2009). 2009 Survey of Americans on HIV/AIDS: Summary of Findings evidence would eventually demonstrate that the on the Domestic Epidemic. www.kff.org/kaiserpolls/ rate of new infections was always much higher upload/7889.pdf than had been believed. 23. Henry J. Kaiser Family Foundation (2009). Likewise, when rates of new infections plum- 24. See Shilts R (1987). And the Band Played On. New meted among gay men in the 1980s, it was as- York: St. Martin’s Press. 25. Concorde Coordinating Committee (1994). sumed that the AIDS problem in gay communi- MRC/ANRS randomised, double-blind controlled trial of ties would become a thing of the past. Yet today, immediate and deferred zidovudine in symptom-free HIV the number of gay and bisexual men newly in- infection. Lancet 343:871-881. fected with HIV each year is roughly 50 percent 26. UNAIDS 2010 Global Report. higher than in the early 1990s, with especially 27. Levine RS et al. (2007). Black-White Mortality from HIV in the United States Before and After the Introduction high infection rates among young Black men. of Highly Active Antiretroviral Therapy in 1996. Am J Pub In short, the history of AIDS repeatedly Health 97:1884-1892. demonstrates the critical importance of vigi- 28. See Black AIDS Institute (2008). lance. As AIDS enters its fourth decade, renewed 29. Global HIV Prevention Working Group (2007). energy and commitment are needed to avoid still Bringing HIV Prevention to Scale: An Urgent Global Necessity. www.globalhivprevention.org/reports.html. more surprises in the history of the disease. 30. CDC (2006). Human Immunodeficiency Virus (HIV) Risk, Prevention, and Testing Behaviors—United The History of the AIDS Epidemic in Black America, 2011 35

States, National HIV Behavioral Surveillance System: Men 58. Heron M (2010). Deaths: Leading Causes for 2006. Who Have Sex with Men, November 2003–April 2005. National Vital Statistics Report 58:1-98. Morbidity and Mortality Weekly Report 55:1-16. 31. CDC (2007). Pregnancy and Childbirth—Fact Sheet. www.cdc.gov/hiv/topics/perinatal/index.htm. 32. Karim QA et al. (2010). Effectiveness and Safety of Tenofovir Gel, an Antiretroviral Microbicide, for the Prevention of HIV infection in Women. Science 329:1168- 1174. 33. Grant RM et al. (2010). Preexposure Chemoprophylaxis for HIV Prevention in Men Who Have Sex with Men. New Eng J Med 363:2587-2599. 34. Das M et al. (2010). Decreases in Community Viral Load Are Accompanied by Reductions in New HIV Infections in San Francisco. PLoS ONE 5:e11068. 35. McNeil DG (2011). Early HIV Therapy Sharply Curbs Transmission. New York Times. www.nytimes. com/2011/05/13/health/research/13hiv.html?_r=1&hp. 36. Rerks-Nagarm S et al. (2009). Vaccination with ALVAC and AIDSVAX to Prevent HIV-1 Infection in Thailand. New Eng J Med 361:2209-2220. 37. CDC (2006). Evolution of HIV/AIDS Prevention Programs – United States, 1981-2006. Morbidity and Mortality Weekly Report 55:597-603. 38. NIH (2011). Estimates for Funding for Various Research, Condition, and Disease Categories. report.nih.gov/ rcdc/categories/. 39. NIH (2011). 40. National Commission on AIDS (1993). AIDS: An Expanding Tragedy. 41. Henry J. Kaiser Family Foundation (2011). U.S. Federal Funding for HIV/AIDS: The President’s FY2012 Funding Request. www.kff.org/hivaids/upload/7029-07.pdf. 42. See KFF (2011). 43. PEPFAR (2011). Saving Lives Through Smart Investments: Latest PEPFAR Results. www.pepfar.gov/ documents/organization/153723.pdf. 44. White House (2010). National HIV/AIDS Strategy. www.whitehouse.gov/sites/default/files/uploads/NHAS.pdf. 45. Henry J. Kaiser Family Foundation (2011). 46. Henry J. Kaiser Family Foundation (2011). 47. CDC (2006). 48. Shilts (1987). 49. Watney S (1987). “The Spectacle of AIDS,” in AIDS: Cultural Analysis, Cultural Activism (Crimp D, ed.). Cambridge MA: MIT Press. 50. Herek GM (1999). AIDS and Stigma. American Behavioral Scientist 42:11-6-1116. 51. See CDC (1982). Update on Acquired Immune Deficiency Syndrome (AIDS)—United States. Morbidity and Mortality Weekly Report 31:507-514. 52. Herek GM et al. (2002). HIV-Related Stigma and Knowledge in the United States: Prevalence and Trends, 1991-1999. Am J Pub Health 92:371-377. 53. See Johnson JB (2005). Secret gay encounters of black men could be raising women’s infection rate. San Francisco Chronicle. May 1. articles.sfgate.com/2005-05-01/ news/17372505_1_black-men-female-partners-sexual- activity. 54. Bond L et al. (2009). Black Men Who Have Sex With Men and the Association of Down-Low Identity with HIV Risk Behavior. Am J Pub Health 99”S92-S95. 55. Henry J. Kaiser Family Foundation (2009). 56. Henry J. Kaiser Family Foundation (2009). 57. CDC (2011). Bishop T. D. Jakes, Sr. The History of the AIDS Epidemic in Black America, 2011 37

THE TIMELINE AIDS: 30 Years Is Enuf! The History of the AIDS Epidemic in Black America

CDC reports that GRID has been 1981 diagnosed in hemophiliacs CDC reports and Haitians. The on an unusual phrase 3Hs— CDC and others cluster of cases of Hemophiliacs, adopt the name severe immune Haitians and Acquired Immune suppression Homosexuals—is Deficiency among gay men in coined Syndrome, U.S. Health and Los Angeles identifying four Human Services “risk factors” for Secretary the disease (male Margaret Heckler 1982 homosexuality, predicts that a injection drug use, preventive vaccine 86 Black people Haitian origin, and for HIV will be diagnosed with hemophilia) available in two AIDS in the first 12 years months after the New AIDS CDC’s initial report Heterosexual on the epidemic reports increase exponentially transmission is documented 30Gay Men’s Health Crisis formed HIV documented First news story on becoming the 1983 among children AIDS is published first AIDS service organization in the 787 cumulative in the New York CDC reports that U.S. AIDS diagnoses Times Black people among Blacks account for New disease is 26 percent of known as Gay French scientists all individuals Related Immune isolate HIV diagnosed with Deficiency (GRID) AIDS in 1981-83 38 AIDS: 30 Years Is Enuf!

People with AIDS school in Kokomo, prevention gather in Denver, Indiana information to articulating every U.S. principles and Rock Hudson dies household giving rise to the AIDS Haitians formally Black Coalition on empowerment dropped from AIDS is founded movement list of “high-risk” groups California defeats Proposition 64, the Actor Rock Lyndon LaRouche Hudson American AIDS quarantine announces he has Foundation for initiative AIDS AIDS Research founded U.S. Justice San Francisco takes Department steps to close gay advises that National bathhouses Association of employers are able to ban workers People with AIDS First needle formed with AIDS from the exchange program workplace established in the CDC warning Netherlands to blood banks triggers national An estimated Rev. Carl Bean 1987 furor on the safety 400,000 to 450,000 founds Minority of the blood 12,508 cumulative people are living AIDS Project supply with HIV in the U.S. AIDS diagnoses among Blacks The Larry Kramer CDC officially play—A Normal declares that Blacks surpass Heart, about the female partners of 1985 whites in total early years of men with AIDS and number of new AIDS—appears children born to 4,004 cumulative HIV infections in for the first time infected mothers AIDS diagnoses the U.S. at New York City’s are at risk among Blacks Public Theatre Epidemiologists First antibody test document the for HIV is licensed epidemic in 1986 Central Africa First International AIDS Conference is 7,224 cumulative First articles on held in Atlanta AIDS diagnoses AIDS appear in among Blacks Black newspapers but do not focus Food and Drug on racial disparities Administration approves AZT, or zidovudine, for treatment of HIV 1984 infection

1,898 cumulative FDA approves AIDS diagnoses Western Blot test among Blacks Teenager Ryan to confirm positive White is denied Surgeon General HIV test results admittance to his C. Everett Koop sends HIV The History of the AIDS Epidemic in Black America, 2011 39

testing policies by declares AIDS to be as the infection requiring testing “public health rate surges in Black of immigrants and emergency” America prisoners

CDC holds first national conference on HIV and communities Debra Fraser- of color Howze founds the National FDA formally Black Leadership endorses condoms Commission on for use to prevent AIDS HIV transmission Disco diva and soul singer Sylvester National Task dies of AIDS- Force on AIDS related Activist Pernessa Prevention 1988 complications Seele founds the is founded by Balm in Gilead to 21,929 cumulative engage Black Reggie Williams, Educational Phill Wilson and AIDS diagnoses churches in the among Blacks pamphlet on AIDS fight against AIDS Steve Feeback is mailed to 100 as a project of million U.S. homes NABWMT CDC announces AIDS Coalition to that Blacks Unleash Power account for half of (ACT UP) is created all AIDS cases ever following a fiery reported among address by activist women and playwright Larry Kramer International health experts Dance legend announce Alvin Ailey dies of that women AIDS-related ABC News outnumber men causes broadcaster Max among people Robinson dies of living with HIV in sub-Saharan Africa NAACP AIDS-related publication The causes Crisis publishes first Arthur Ashe article on AIDS diagnosed with AIDS President Ronald National Institutes Reagan formally of Health launches addresses AIDS for parallel track the first time 1989 program to provide people AIDS quilt is 31,198 cumulative not enrolled in launched to AIDS diagnoses clinical trials access memorialize those among Blacks to experimental lost to AIDS treatments More than twice as President Reagan Health and Human many Black people ramps up Services Secretary are newly infected mandatory HIV Louis Sullivan with HIV as whites, 40 AIDS: 30 Years Is Enuf!

theories in Black CDC issues death in U.S. men communities that guidelines on ages 25-44 1990 the government HIV-positive health is withholding care workers but FDA approves first 45,446 cumulative this medical subsequently rapid HIV test AIDS diagnoses breakthrough backtracks among Blacks; The first anti­ 28,576 cumulative More than 15,000 retroviral cocktail AIDS deaths Black people in the appears, although among Blacks U.S. die of AIDS in a its effectiveness is single year limited CDC issues a report on the possible First conference on transmission of HIV women and AIDS is from provider to held in Boston patient during a dental procedure, Ryan White dies igniting a national furor Basketball legend Congress enacts 1991 Earvin ‘Magic’ the Ryan White Johnson CARE Act to 60,037 cumulative announces he is provide grants to AIDS diagnoses living with HIV hard-hit cities and among Blacks; The first part of the all states for HIV 38,264 cumulative Housing Tony Kushner play care and treatment AIDS deaths Opportunities for Angels in America services among Blacks People with AIDS premiers in Los is established Angeles 1992 1993 73,686 cumulative 114,868 cumulative AIDS diagnoses AIDS diagnoses among Blacks; among Blacks; 50,253 cumulative 68,651 cumulative AIDS deaths AIDS deaths among Blacks among Blacks President George H.W. Bush signs CDC estimates that into law the 650,000 to 900,000 Americans with people are living Gospel recording Disabilities Act, with HIV artist Rev. James which effectively Cleveland dies of becomes the first Magic Johnson AIDS-related national law joins with other causes prohibiting Black celebrities A comprehensive HIV-related to produce the study discrimination The red ribbon AIDS prevention is first used as program “Time commissioned by the international CDC concludes Kenyan research Out” symbol of AIDS that needle team announces awareness exchange it has found a AIDS becomes the programs are cure for AIDS, leading cause of effective in stoking conspiracy The History of the AIDS Epidemic in Black America, 2011 41

preventing HIV featured on the transmission cover of Essence 1995 AIDS becomes leading causes of 174,715 cumulative death among all AIDS diagnoses people ages 25-44 among Blacks; 102,361 cumulative The number of AIDS deaths AIDS cases in the among Blacks United States doubles again, First National HIV surpassing 400,000 Testing Day is held President Bill Clinton signs HIV immigration ban Tennis great into law Arthur Ashe dies of AIDS-related causes 1994 FDA approves the 146,285 Reality female cumulative AIDS condom diagnoses among Blacks; 84,549 Large Concorde cumulative AIDS trial demonstrates deaths among that early AZT Blacks does not extend life A landmark serosurvey of gay and bisexual men in San Francisco and Berkeley finds Bill & Melinda that Black men are New AIDS cases Gates Foundation among Blacks more than twice is formed as likely to be surpass those infected as whites among whites and Latinos Clinical trial demonstrates White House that AZT reduces FDA approves first convenes African Philadelphia—a mother-to-child oral test for HIV American National major motion transmission Clergy Summit on picture starring HIV/AIDS Denzel The U.S. National Washington and Institutes of Health Tom Hanks— requires grant appears to critical applicants to acclaim, winning include women two Academy and minorities in Awards the clinical trials following year

Activist Rae Lewis-Thornton is 42 AIDS: 30 Years Is Enuf!

America peak at International AIDS with HIV as whites, 18,813. Conference in as declines in Vancouver new infections Food and Drug among whites Administration are matched by licenses the first increased infection of a new class rates in Black of antiretroviral America drugs, protease inhibitors

Novella Dudley dies of AIDS- related complications Eazy-E dies of Prosecutors bring AIDS-related International AIDS charges against complications 12 Vaccine Initiative is Nushawn days after publicly launched Williams for announcing his deliberately condition Black gay writer Although AIDS exposing several Essex Hemphill is no longer the white women to dies of AIDS- leading cause of HIV related causes death for people in the U.S. ages AIDS deaths in White House holds 25-44, it remains the U.S. decline conference on the leading cause by more than 40 AIDS of death for Black percent Americans Joint United Nations Program on AIDS (UNAIDS) 1996 is created 203,189 cumulative AIDS diagnoses among Blacks; 119,538 cumulative Brazil launches free AIDS deaths antiretroviral among Blacks therapy through UNAIDS launches the public sector pilot projects in Harvard AIDS Uganda and Côte Institute launches d’Ivoire, which will “Leading for Life” 1997 ultimately campaign to demonstrate the mobilize Black 230,029 cumulative feasibility of leaders AIDS diagnoses introducing HIV Los Angeles among Blacks; treatment in Dodger slugger 132,221 cumulative developing Glenn Burke dies Presentation of AIDS deaths countries of AIDS-related data on morbidity among Blacks complications and mortality reductions resulting from More than twice as Annual AIDS antiretroviral many Black people deaths in Black therapy electrifies are newly infected The History of the AIDS Epidemic in Black America, 2011 43

AIDS prevention launched by and education the predecessor 1998 organization of the Minority AIDS Institute 21,515 new AIDS Initiative is diagnoses among created, with $166 Globally, more Blacks; 141,607 million in funding than 1.5 million cumulative AIDS people die of deaths among President AIDS-related Blacks Bill Clinton causes acknowledges Black AIDS activists effectiveness of declare AIDS needle exchange to be “state of but declines to 2000 emergency” and allow federal 19,783 new AIDS demand national funding for diagnoses among action, a cause Rep. Maxine needle exchange Blacks; 7,401 taken up by the Waters (D-CA), programs new AIDS deaths Congressional chair of the among Blacks Black Caucus Congressional Treatment Action Black Caucus, Campaign is challenges For the first time, launched in South Congress to more Black and Africa to make HIV provide $349 Latino gay men are treatments more million in diagnosed with affordable and emergency AIDS than white accessible in the funding to address gay men country with the AIDS in largest number of communities of people living with NAACP leaders color HIV pledge to raise AIDS awareness

National Medical 1999 Association declares “war on 21,900 new AIDS AIDS” diagnoses among Blacks; cumulative deaths among Blacks pass 150,000 BET inaugurates Reggie Williams, Dr. Walter Rap-It-Up National a founder of the Shervington, compaign. Conference National Task AIDS researcher on African Force on AIDS and former Americans and Prevention, dies National Medical AIDS produces Association action steps to Black AIDS President, dies strengthen the Institute is National AIDS response founded as the Black clergy convention of nation’s only think convene in Delta Sigma tank exclusively Tuskegee to study Theta sorority devoted to HIV in ways to strengthen approves Black America the AIDS response resolution affirming its The first national commitment o UNAIDS Black AIDS negotiates newsletter is 44 AIDS: 30 Years Is Enuf!

agreement orders the with five major government to roll pharmaceutical 2001 out prevention of companies to mother-to-child reduce prices for 21,031 new AIDS transmission antiretroviral drugs diagnoses among in poor countries Blacks; 8,915 Caribbean leaders new AIDS deaths launch a major International AIDS among Blacks regional initiative Conference in on AIDS Durban, South First annual Africa—the first National Black ever held in the HIV/AIDS global South— Awareness Day is 2002 generates calls held 21,106 new AIDS to expand HIV Belinda Dunn dies treatment access diagnoses among Global leaders Blacks; 8,566 of AIDS-related in developing gather at the complications countries new AIDS deaths first-ever UN among Blacks General Assembly FDA approves United Nations Special Session OraQuick rapid Security Council on HIV/AIDS HIV test using a holds a special where agreement finger prick session to focus is reached on on the security intellectual implications of the property global epidemic rights allowing 2003 developing countries to 21,214 new AIDS take innovative The Global Fund daignoses among steps to expand to Fight AIDS, Blacks; 9,048 access to essential Tuberculosis and new AIDS deaths medicines for Malaria is launched among Blacks priority diseases as a major new funding mechanism for HIV and other health programs in developing countries Rev. Jesse Jackson hosts town hall meeting on AIDS AIDS becomes the at the Rainbow/ leading cause of PUSH convention death worldwide for people ages 15-59 The Black Treatment Advocates Botswana launches Network is the first national President George launched AIDS treatment W. Bush launched program in Africa, U.S. President’s with support from Globally, more Even as South Emergency Plan Merck and the Bill than 30 million African President for AIDS Relief & Melinda Gates people are living Thabo Mbeki (PEPFAR), the Foundation with HIV embraces AIDS largest health denialists, the program ever Pretoria High Court The History of the AIDS Epidemic in Black America, 2011 45

focused on a single Republican adolescents and disease nominee Dick pregnant women Cheney and in health care First clinical trial Democratic settings of a preventive nominee John vaccine yields Edwards, asks a A delegation of disappointing question about Black leaders calls results AIDS in Black for a national Black America, exposing AIDS mobilization each candidate’s Clinton at the International ignorance of the Foundation Noah’s ARC, AIDS Conference in topic secures major written and Toronto reductions directed by in prices for Patrik-Ian Polk, Global community AIDS drugs in about four Black endorses goal of developing gay friends dealing universal access countries with everyday life to HIV prevention, premieres on Logo treatment, care and support CDC reports that 2004 a five-city study Cumulative AIDS Oral rapid HIV finds 46 percent 2007 deaths among test approved by of Black gay and Black Americans FDA bisexual men 17,507 new AIDS surpass 200,000 surveyed are living diagnoses among with HIV Globally, AIDS Blacks; 7,124 new deaths peak at AIDS deaths more than 2 French researchers among Blacks million report that adult male circumcision A major trial reduces the of a vaginal risk of female- microbicide 2005 to-male sexual produces transmission by 60 disappointing 20,187 new AIDS percent news diagnoses among AIDS activist Keith Blacks; 8,562 Cylar, co-founder new AIDS deaths of Housing Works, among Blacks; 2006 dies nearly 30,000 new Merck discontinues estimated HIV 17,960 new AIDS diagnoses among testing of what infections among was believed to be Blacks Blacks; 7,426 new AIDS deaths the most among Blacks promising CDC announces candidate vaccine that Black America following accounts for Black leaders disappointing trial roughly half of the convene at the results U.S. epidemic International AIDS Conference in Toronto to issue Black clergy meet a declaration of to explore the commitment church’s role in the AIDS fight Journalist Gwen Ifill, moderating a CDC recommends Vice Presidential routine HIV debate between testing for adults, 46 AIDS: 30 Years Is Enuf!

Luc Montagnier, its new receive the Nobel chairwoman 2008 Prize in medicine for their discovery CDC launches CDC estimates of HIV the Act Against that 545,000 Black AIDS Initiative, people in the U.S. First-ever decline providing core HIV are living with HIV, in global AIDS funding to several including 21.4% death is reported traditional Black with undiagnosed institutions infection 2009 Cumulative AIDS Left deaths among Behind Black Americans BLACK AMERICA: A NEGLECTED PRIORITY IN THE approach 250,000 GLOBAL AIDS EPIDEMIC Barbara Lee (D-CA) calls for a national AIDS Black AIDS Institute, August 2008 strategy at the International AIDS A special report by Conference in the Black AIDS Mexico City Institute—Left Behind—reports CDC estimates that Black America that 1.1 million would have the Americans are world’s 16th living with HIV, President Barack Internationally largest population including 46 Obama acclaimed HIV of people living percent who are reinvigorates clinician Robert with HIV were it a Black White House Office Scott dies of country on its own of National AIDS pulmonary embolism CDC estimates Policy by naming CDC estimates indicate that new Jeffrey Crowley as that 56,000 infections among new ONAP director Clinical trial in people—including gay and bisexual Thailand finds that 45 percent who men increased by a combination are Black—are roughly 50 percent vaccine is newly infected between 1991 modestly effective with HIV each and 2006, with in protecting year—roughly especially high against HIV 40 percent more rates reported infection—the first than previously among young such positive sign believed Black gay men in a clinical trial

Disappointing trial results are reported for what is believed President Obama to be the most takes steps to promising rejuvenate the microbicide Presidential candidate Two French Advisory Council scientists, on HIV/AIDS, Françoise Barré appointing Dr. -Sinoussi and Helene Gayle as The History of the AIDS Epidemic in Black America, 2011 47

President Obama signs into law, comprehensive health care reform legislation that will extend health coverage to more than 30 Polling by Henry million uninsured J. Kaiser Family individuals Foundation indicates that American concern about AIDS has 2011 sharply declined, NIH trial finds that including among early initiation Black Americans of antiretroviral therapy South African demonstrates reduces the 2010 researchers that pre-exposure likelihood of HIV Quarraisha and prophylaxis transmission with Obama Salim Abdool significantly lowers serodiscordant Administration Karim report that the risk that gay or couples by ends 20-year-old an antiretroviral- bisexual men will 96 percent in travel restrictions based vaginal contract HIV comparison to on foreigners microbicide delayed therapy living with HIV significantly Ban on federal reduces women’s funding for The number of risk of becoming needle exchange people on waiting infected programs is lifted lists for AIDS Drug Assistance International AIDS Programs Society announces approaches 8,000 that International AIDS Conference will be held in the U.S. in 2012 for the first time in more than two decades The Black AIDS South Africa’s new Institute joins with leader, President the Henry J. Kaiser Jacob Zuma, Family Foundation breaks with his NATIONAL HIV/AIDS STRATEGY FOR THE to launch the UNITED STATES predecessor to Greater Than AIDS pledge a major campaign

national effort to JULY 2010 combat AIDS Discovery of numerous antibodies that President Obama neutralize HIV unveils new raises hopes National HIV/ for vaccine AIDS Strategy development

Multi-country Congress clinical trial passes, and Viral Generation ISO Real Connections on HIV/AIDS By Julian Breece

Those of us born after 1981 share a unique duality. For the most part, we’re known as the Millennials or Gen Y—children of the Information Age, raised in a world of mass media, digital technology and wireless communication. We are the most educated and tech-savvy generation in history, and the first to incorporate social media and Internet technology into every facet of our lives. But what also distinguishes Millennials, and seems to be increasingly over-looked, is that we represent the first generation of Americans born in the era of AIDS. Our formative years were in lockstep with the rise of the HIV infection, which killed more Americans than any war in modern history, and is still etched into our cultural narrative. That said, Black Millennials’ relationship to I explored the latter statistic in my short HIV/AIDS is especially complex. In the mid-’90s, film The Young & Evil, which follows a day in the the U.S. began to see steep declines in new HIV life of a sexually active Black gay teen. I wrote infections and AIDS related-deaths—a down- the film after reading similarly disturbing CDC ward trend that continued into the new millen- estimates. At the time, I remember feeling an nium. However, even as advances in treatment inexorable sense of dread regarding HIV. As gay and prevention have stabilized the disease among young man who grew up during the AIDS crisis, the greater U.S. population, infections among I knew that sex was a potentially fatal enterprise Black Americans continue to rise. We represent before I even understood how it worked. Even to- roughly 14 percent of the U.S. population, but ac- day, at 30, my sexuality continues to be informed count for nearly half of the people in our coun- by the need to remain negative. It’s part of the Ttry living with HIV. According to a 2010 CDC reason I didn’t understand why so many of my report, Black Millennials seem to be especially peers were becoming infected despite sharing a hard-hit, with estimates showing that one-third similar awareness. of all new infections among Black Americans oc- I got closer to an answer in 2009, as The curred in young people aged 13 to 29. Infections Young & Evil began to travel the country. During among young Black women in that age group are that time, I came in contact with young activists, “11 times as high as that of young white women health care advocates and academics that were and four times that of young Hispanic women.” equally concerned about the ongoing crisis in Perhaps most alarming are disease estimates on our community. The insights that struck me the Black gay and bisexual men aged 13 to 29, with a most came from a 27-year-old youth counselor 2008 study reporting that as many as 21 percent from Kansas City who I’ll call “Marcus.” We met of the men in this population are already infected at the Creating Change Conference in Denver. with HIV. At that point, Marcus had been working with The History of the AIDS Epidemic in Black America, 2011 49 at-risk youth and focused much of his work on had contracted the virus from his monogamous HIV testing and prevention. As our conversa- partner. In a separate interview, Tree’s twin sister tion progressed, I was surprised when Marcus Sonya Herriot, 24, describes the day that Tree revealed that he had contracted HIV the year confided in her about his status, and how that before. Despite an acute knowledge of prevention, conversation strengthened their bond. Marcus had found himself at an emotional low In the Black community, gay and bisexual point at the time that he became positive. He said men continue to feel the greatest impact from that he felt isolated and was desperate for a “real the Black AIDS crisis. In an in depth interview, connection.” community leader, Venton Jones, 27, discusses When I started working on this collection, the unique challenges facing Black men who have which presents my generation’s response to HIV/ sex with men and how those challenges increase AIDS, that notion of “real connection” came up their vulnerability to HIV infection. Prevention and again and again, and emerged as a thematic worker Greg Wilson, 29, examines the effects of link between the selected essays and interviews. internalized homophobia in his piece and stresses I began to realize that my generation’s need for the importance of targeted community outreach. connectivity isn’t an entirely technical concern, Despite the need for honest dialogue be- but rather an extension of the impulse that guides tween Black men and women on HIV, there are humanity. When Marcus described his need for related concerns that affect each group uniquely. “connection,” it seemed to have little to do with In her statement, best-selling author Nancy unprotected sex, but that he’d simply found him- Redd, 30, says, “Black women need to learn about self on a desperate scramble for validation—for sexual health from other women who can address proof that he existed and that he belonged. In the the importance of self-respect and self-protec- pages that follow we’ll examine the disconnect tion.” Thirty-year-old William Brawner, details between HIV prevention and the young Black the struggles he faced coming of age with HIV, generation, and meet 30 young representatives and calls on other HIV positive straight men to from the group who are determined to bridge the release themselves form shame and stand up in gap. the fight. . In order to provide a framework for our We also spotlight young people who are conversation, I called upon several rising Black “making the connection” on HIV awareness via intellectuals to provide an overview of the social new media platforms. Media consultant, Luvvie and political factors stoking the ongoing crisis of Ajayi, 26, founded The Red Pump Project, which, Black AIDS. In his incisive polemic, NYU scholar this past year organized 1,200 bloggers to partici- Frank Roberts, 29, indicts the “structured leader- pate in National Women and Girls’ HIV/AIDS ship” of the Black community, charging them Awareness Day. Popular singer and Internet with “irresponsible vilification” of non-marital personality Steph Jones tells us that he promotes and non-monogamous sex despite a liberal HIV prevention to fans by sending tweets when- discourse on sexuality in the Black mainstream. ever he gets tested and chatting about the disease In an interview, political activist Maya Marcel- on U-Stream. Keyes, 26, takes his point a step further, and The young people in this collection come suggests that sexual stigma drives HIV/AIDS from different parts of the country, represent prevalence, because it’s directly preclusive to a range of perspectives, and have each been sexual education and sexual health. touched by the AIDS epidemic in different ways. As I compiled and edited essays, I was drawn They represent a generation of Black Americans to several brave testimonials from young people who haven’t known a world without the disease, living with HIV. Celebrated activist Hydeia but they’re bonded in the assertion that 30 years Broadbent, 26, was born with HIV, and shares is, indeed, enough. her story as “proof that an HIV diagnosis does not equal death.” Author Marvelyn Brown, 27, Julian Breece is a writer and filmmaker. His was diagnosed positive in 2003, and tells us debut film, The Young & Evil, addressed the rise how she transformed her life from one “plagued in HIV infections amongst young Black gay men with uncertainty, loneliness and stigma” to one and was an Official Selection of the Sundance of “self-love and self-acceptance.” In his essay, Film Festival in 2009. Breece is also the creator outreach worker Tree Alexander, 24, details the of BET’s hit comedy series Buppies, and the heartbreak he experienced upon learning that he upcoming drama series American Skin. 50 AIDS: 30 Years Is Enuf!

epidemic is the result of a larger figuration of how we do “HIV FRANK set of structural inequities that prevention.” First, let us be are fueled and manufactured honest: many of us are suffer- ROBERTS externally: a prison industrial ing from condom fatigue. The he AIDS epidemic in complex that has become a field of HIV prevention is in Black America is the breeding ground for HIV infec- desperate need of a revival. The result of a powerful tion; a federal government that awareness campaigns coming setT of political, historical, and devotes inadequate funding and out of the prevention industry FRANK ROBERTS socio-cultural forces that are at pays insufficient attention to have increasingly made condom Co-Founder work multilaterally, inside and the health and wellness of Black usage feel like more of a “chore” National Black outside of the Black commu- constituencies; and an HIV than a source of erotic pleasure. Justice Coalition nity. On one hand, the con- prevention industry that has Indeed, in the eyes of the gen- Age: 29 tinued rise in HIV infections been slow to address the racial eral public the only thing that New York, NY among Black men and women disparities that are plaguing the the HIV prevention industry can be attributed to Black epidemic. has been good at preventing is America’s longstanding and The daunting challenge pleasure. Condoms continue to contumacious unwillingness to ahead for the emergent cohort be associated with preventing have candid, open, and non- of young Black leaders will be rather than heightening sexual judgmental conversations about to figure out how to simultane- pleasure, which is precisely why our relationship with power, sex ously probe, reverse and undo there is so much resistance to and sexuality. Black America these internal and external using them. In spite of the tre- continues to suffer from a sti- dilemmas; and if we’re ever to mendous gains the prevention fling paradox: while our sources do so, several paradigm shifts industry has made over the past of popular entertainment (hip- must occur: 30 years, the field has failed to hop, cinema, radio, and Black First, the end of AIDS in devote sufficient attention to a television) are saturated with Black America can only take fundamental dilemma that still images of non-marital, non- place by and through a series of fuel’s most people’s desire to monogamous sex, our struc- aggressive political transforma- want to have unprotected inter- tured political leadership (i.e. tions that must include altering course: sex without a condom the ministers, elected officials, the culture of the Black church feels better. and community organizers who (by demanding that its lead- The time has come for us to are influencing public policy) ers be held accountable for the organize our prevention efforts is characterized by an irre- deadly effects of their egregious around what I like to call the sponsible vilification of sexual sexual conservatism); increas- “pleasure principle” (i.e. the identities that exist outside the ing the political might of the understanding that the more confines of marriage, hetero- Black electorate (by forcing we are able to enhance people’s sexuality, and monogamy. Thus, our elected officials to finally experiences with condoms, the while the discourse on sexuality translate Black constituent con- more likely they will be to use within the realm of Black popu- cerns into legislative policy, or them). Therefore, in my mind, lar culture has become more risk losing the Black base of the our greatest challenge ahead varied and liberal as of late, the Democratic party); politically will be figuring out how to institutions that make up our empowering those voices in significantly increase the plea- formalized political structure the Black community that have sure that can be derived from are still characterized by stig- been systematically silenced latex prophylactics. Though matizing, moralistic, and anti- (particularly single Black moth- small strides have been made in productive dialogues. In this ers, gay men, and substance recent years (by way of ribbed context, Black America’s AIDS abusers) and assisting in the condoms, ultra-thin brands, epidemic is largely the result creation of a greater number of and the vaginal condom) of its own internal shortcom- HIV agencies that are run by, ultimately our outcomes in this ings and prevailing ideological for, and within communities area have been meek at best. As dogmas. of color. we look ahead, our generation On the other hand, the America, we will also have will have to commit to more crisis of Black America’s AIDS to engage in a complete recon- aggressive research, time, and The History of the AIDS Epidemic in Black America, 2011 51 funding towards broaden- ing the range of prophylactics people have at their disposal. HYDEIA BROADBENT Ultimately, it is only when all of these grand- I was given a death sentence at age 3. I was told that I would not live past the age of 5. scale transformations occur This year, I turn 27. simultaneously—a decline in our mainstream Black commu- n the mid-80s, there wasn’t much hope for children nity’s systematic homophobia; born with HIV. But now—30 years later—there is hope, HYDEIA BROADBENT an increase in the number of and those living with the virus should use my life as Speaker & Activist “home-grown” HIV agencies proof that a positive test result does not equal death. Age: 27 IThat said, some people think that because I was born situated within communities of Las Vegas, NV color; a greater governmental with HIV, my story doesn’t apply to their lives. But the fact is concern for the lives of Black that the same disease I’m living with and almost died from is people; and a reconfiguration a disease you can contract through unprotected sex. For that of the field of HIV preven- reason, I ask people to use my testimony as a warning, be- tion—that our generation can cause even though there’s hope for people living with HIV/ finally witness the fall of AIDS AIDS, there are also serious difficulties. Because death is no in Black America. longer in front of our faces, we’ve stopped warning younger generations of the dangers that come from not protecting Frank Roberts is a Ph.D. can- themselves. Did we forget that this is a costly disease and at didate at New York University, the end of the day there is still no cure? Did we forget that where he is the recipient of the people are still dying from complications? Ford Foundation Diversity When the AIDS epidemic started we only saw images Fellowship. Visit frankrobert- of gay white men suffering from it and that’s the image sonline.com. that stuck. Now, in 2011, HIV/AIDS has become an epidemic among African Americans. Our community is being hit harder than any other, yet we have moved slower than any LUVVIE AJAYI other to stand up and fight. he Red Pump Project As we commemorate 30 years of AIDS, let’s use this as was launched two years an opportunity to raise awareness, remember those who’ve ago, when Karyn Wat- passed on, and celebrate victories like increased access to kinsT and I decided to commem- treatment and prevention services. At the same time, we orate National Women and have to challenge individuals to step up and work together Girls’ HIV/AIDS Awareness in the continued fight against this ongoing epidemic. I per- Day (NWGHAAD) on March sonally challenge people to talk about HIV to their families, LUVVIE AJAYI 10th. Our idea was to have co-workers and friends. You don’t have to be rich or famous Co-Founder bloggers dedicate posts to the to educate people about the disease; you just have to care. The Red Pump Project epidemic as it affects women Hydeia Broadbent was featured as one of “100 African Amer- Age: 26 and ask their female readers to icans Making History in 2011” by NBC News and TheGrio. Chicago, IL put on their favorite pair of red com. shoes on NWGHAAD. The goal was to have 100 bloggers par- ticipate and display our custom wrapped on March 10, 2011, The Red Pump Project is now a red pump on their sidebars. On had 1,200 blogs participate! national nonprofit organization March 10, 2009, 135 bloggers Red Pump has not only es- that raises awareness about the talked about HIV/AIDS and its tablished a presence online, but impact of HIV/AIDS on women impact on women, displaying we’ve hit the ground running and girls. the red pump badge on their with awareness events around pages. In 2010, 250 bloggers the country to ensure that Luvvie Ajayi is a social media strategist. Co-founder of the “Rocked the Red Pump” for women are empowered with Red Pump Project, she holds a NWGHAAD. Red Pump’s knowledge about HIV/AIDS degree in psychology from the 3rd annual campaign, which and the issues surrounding it. University of Illinois. 52 AIDS: 30 Years Is Enuf!

surprised by the paradoxical rise will go a long way toward de- MAYA in infection among Black men stigmatizing communication and women? about sexuality, which in turn MARCEL-KEYES I wouldn’t say surprised, will help the fight against Much of your work as an no. Communities of color are AIDS. activist has been focused on the often hit disproportionately plight of homeless queer youth, hard by all kinds of ills, for Why have older many of whom are homeless as any number of reasons—poor generations been unsuccessful MAYA a direct result of “coming out” to access to safe sex education, in communicating messages of MARCEL-KEYES their families. Why is this issue the lack of proper health sexual health and prevention Political Activist of personal importance to you care in poor communities, to Black youth? And how can Age: 26 and how does it intersect with more cultural stigma around young people step in and change Washington, DC the continued fight discussions of sexuality. If the tide? against AIDS? we continue to avoid proper I think in older generations The issue of homeless conversation on matters of there is a higher prevalence queer youth has been a very sexual health, and fail to of conservative attitudes personal one for me, because provide the resources needed to when it comes to matters of LGBT youth are at high risk tackle this issue, infection rates sexuality. This has obviously of homelessness, due in large will continue to rise. been a hindrance when part to the ostracism they can trying to talk openly and face from families that don’t You’ve been a strident without stigma about matters accept them. Growing up, I saw voice in the fight for marriage of sexual health. Changing a number of friends get rejected equality, while some Black the tide, I think, requires a by their parents and end up on queer activists have expressed comprehensive approach to the the streets—eventually, I was their disillusionment, alleging situation. As long as there are even one of them. I watched the larger community’s higher incidences of poverty people go through some really abandonment of issues that and inequality in the Black terrible things out there, and I disproportionately affect poor community, there are going lost people I cared about deeply. LGBTs and LGBTs of color. Does to be higher incidences of all Seeing all that really spurred the marriage fight complement kinds of health and social ills. my desire to do something to the continued fight against To me, I think the most help the situation. AIDS? important thing Black youth Homeless youth are at While I am not certain can do is get involved in their higher risk than other youth of how much of a direct relation communities in whatever way contracting HIV—possibly as there is between the marriage seems most important to them, much as 2-10 times higher than fight and the fight against as long as it is helping to uplift their peers. There is definite AIDS, I definitely do think the community. The issues that intersectionality between the that one influences the other plague the Black community struggles of homeless youth in an important way. I believe and any minority community and the struggle against AIDS, that some of the prevalence are all intersecting; they don’t and I think it would be to our of HIV in certain cultures happen in a vacuum. If young detriment to ignore any one can be attributed to the people work together to combat issue in favor of another. stigma surrounding issues inequalities on one level, of sexuality, which works to the situation overall will be Has HIV/AIDS personally prevent people from gaining improved. touched your life? If so, how? access to the education and Most importantly, I think, Yes, I have lost very close resources they need to be in being proactive in taking friends to AIDS. It sucked. control of their sexual health. leadership roles in the fight and The fight for marriage equality reaching out to peers will be Considering the overall has been a large part of the more effective than allowing progress we’ve seen in America overall fight for LGBT equality ourselves to be talked at by with regard to HIV awareness and acceptance, and I think people who might not have the and prevention, are you making strides in that regard same perspectives. The History of the AIDS Epidemic in Black America, 2011 53

Maya Marcel-Keyes has served on the board of the National Youth Advocacy Coalition, and MARVELYN BROWN was awarded the Emery Award from the Hetrick-Martin Insti- found out that I was HIV positive in 2003. By then tute for outstanding work on treatments had advanced to the point where you behalf of homeless could choose to live with the disease, while a decade LGBT youth. earlier it was something you’d most likely die from. DespiteI the fact that I had lifesaving medicines available MARVELYN BROWN to me, I was torn between accepting treatment and wal- Author JERMAINE lowing in my own denial and shame. HIV Consultant SYLVESTER Suddenly, the life that I’d envisioned for myself—one Age: 27 that included romance, health and family—was plagued New York, NY n January of 2008, I with uncertainty, loneliness and stigma. For a long time I stumbled upon the pushed my dreams aside, believing that one couldn’t live a FUSION Program in full life with HIV. But eventually I worked through my shame, IHouston, Texas—a community and the strength I gained allowed me to create new dreams. organization dedicated to Today I am healthy and living with HIV in an open, providing a safe space for Black humble and confident way. Each day, I work hard to empow- gay/bisexual young men. It was er young women who naively believe that Prince Charming through this program that I will protect them and keep his word—women who, genera- realized I wasn’t alone in my tion after generation, put themselves at risk only to end up sexuality, but part of a family raising children alone, struggling to pay bills, and facing life’s larger than the one I’d gown up challenges without the skills needed to compete. JERMAINE SYLVESTER with. My struggle has taught me that—as a woman—I am the Intervention That year I also had the architect of my destiny. HIV shattered my dreams but it also Specialist unique privilege of attending helped me rebuild them. Since my diagnosis, I have learned Age: 26 Houston’s first YMSM (Young the importance of self-love and self-acceptance. For me, HIV Houston, TX Men Who Have Sex with was the beginning of the end: it was the end of shame, self- Other Men) Summit where Dr. hatred, and irresponsibility, and the beginning of a new life. Mark Columb gave me a rude Over the past 30 years, many brave people living with awakening to the devastation HIV and others fighting on our behalf have created a new that HIV has wrought in my reality—one in which I can proudly say that I am a confident, newfound family. He gave me independent and loving woman with a real T4 cell count of a history lesson with statistics 1,274 and an undetectable viral load. and shared personal stories that Marvelyn Brown is the author of The Naked Truth: Young, rubbed me in all of the wrong Beautiful and (HIV) Positive. ways. I left that summit raw and afraid for the lives of my sisters and brothers. From that day forward, I refused to stand idle and watch something as weak as HIV wreak havoc on my community. In the end, we are all one family, and where HIV is concerned it takes a village to change the tide. While I remain HIV-negative, my status has not been maintained alone, but also by the support of those around me who cared enough to hold the mirror of reality to my face. 54 AIDS: 30 Years Is Enuf!

SONYA HERRIOT You were the first person So, I was a little scared and When Tree started to tell that your twin brother, Tree, nervous because my brother others about his status did confided in after learning that is my best friend and I didn’t you have to protect him from he tested positive for HIV. How want to lose him. After that people who were ignorant did he tell you? conversation, I called him and about the disease? SONYA HERRIOT First he called me on the told him I loved him every I told people that it Tree Alexander’s phone. He said we needed day. I even cried at night. He wasn’t his fault and not to Twin Sister to sit down and talk, so the didn’t know it but I did. judge him. I’m very pro- Age: 24 next day we met up for lunch. tective of my brother and Chicago, IL As soon as we sat down What were your feelings people know that I’ll take of- he said, “ I have something toward Tree’s boyfriend at that fense really quickly if they say important to tell you, so point? something bad about him. please brace yourself for it.” I was furious. Pissed off. There were a few people who Then he looked down and Because he hurt my brother I had to tell basic stuff, like started looking all over the really bad. I couldn’t stand to they couldn’t get HIV from place. That’s when I told look at him. HIV isn’t some- casual contact like hugging, him, “Whatever it is, it can’t thing you can take some kissing or a fiber of clothing. be that bad. And if it is bad, medicine and get rid of. It’s If people ask me questions you already know I’m here permanent, like a tattoo. He about it I tell them to do their to support you.” That’s when tried to talk to me and beg research before jumping to he told me that his boyfriend for forgiveness, but I was just conclusions. had gotten sick and when disgusted. they took him to the hospital How has Tree changed they found that he had HIV. What was your reaction since his diagnosis? Then he told me that he also when Tree decided to stay with He’s grown so much. got tested and found out his boyfriend for a brief time I’m so proud of him. He’s out he’s HIV-positive too. I was after that? there speaking up and letting shocked when he said it, I was upset, but I told people know what’s true and but I didn’t show it; I didn’t him if that’s what he needed what isn’t. He tells other peo- freeze up. I just hugged him to do, I’d support him. I didn’t ple with HIV to fight for their because he started crying. I like it, but that was his deci- medicine, to fight to stay held him and told him it was sion and I respected it. alive and I love that about going to be alright and we him. He does motivational were going to get through Would you date someone speaking about safe sex, hate it together. I told him I was who is living with HIV? crimes, gay rights—every- going to every appointment I get asked that question thing. I love that he refuses to with him and that I was there all the time and I freeze up on hide in a shell because of his for him 100 percent. it because… I don’t know. I condition. He inspires people know that a person can take to open up and live without Were you scared at all? the proper meds to the point fear. And he inspires me be- I was. I’m not gonna lie, where the HIV in his or her cause of his strength. He’s so I was nervous, because at body is undetectable. I know confident and strong and it’s the time I didn’t know how how everything works but… something I really admire. bad it was or if it was too late I honestly don’t know. for him to get treatment. The History of the AIDS Epidemic in Black America, 2011 55

I think we know why that’s be infected with HIV than gay B. SCOTT the case. There’s a lot of hurt men that are more feminine. Why has it been important and pain in the Black gay I’m not surprised because for you to use your popularity community and it stems from we’re hung up on that. And to spread awareness about HIV/ the ostracization we’ve felt from I know that kind of thing AIDS? the larger Black population. affects the self-esteem of those In 1995, my sister died If there were more acceptance of us who are more feminine from AIDS, so for me the in our community and less and gender non-conforming, issue has always been deeply rampant homophobia, Black because on top of being Black B.SCOTT personal. I grew up in a small gay men would have more and gay if you aren’t “masculine Television and town called Ahoskie, North self-love and be more likely enough” you get degraded by Radio Personality Carolina and AIDS had always to protect themselves. I’m other Black gays.And then Age: 30 been portrayed as something not saying that there isn’t we wonder why AIDS is so New York, NY that only gay people could homophobia in the white rampant in our community. If get. Everyone believed that community, because they aren’t someone doesn’t feel supported and as a teenager that’s what where they need to be either, by others like him he’s less I believed as well. When my but white gay men seem to likely to love himself and sister contracted it and passed experience a level of acceptance protect his own life; and if he’s away, it was a shock and the that Black gay men don’t. not protecting his own life why disease instantly became very would he reveal his status to real to me. Now I try to use the Some people argue that someone he’s sleeping with? It platform I’ve built to educate white communities are just as just creates an endless cycle of people about AIDS, because homophobic as Black commu- destruction. I know that a lot of my love nities, but white gay men have muffins are going through been more likely to leave and Are you hopeful that in 30 similar situations. build spaces for themselves. years Black AIDS will be a thing Right, so in the Black gay of the past? When you were growing community we need to do a Yes, I’m very hopeful up, did the stigmas attached better job of working together because the Black community to AIDS affect how you viewed and supporting each other, has had a long history and your sexuality? because we’re not united. We’re legacy of survival, so I have Definitely. When my sister very pocketed and cliquish and no doubt that we’ll overcome passed away I wasn’t “out” it’s just unfortunate. I really this. I’m also hopeful because yet. Deep down I think I always think it’s time that we start I’m seeing more and more knew I was gay, but my mother working together for the greater people like myself sending out was a devout Christian and good instead of mimicking the a positive message about what taught us that homosexuality homophobia that we receive it means to be Black and gay was wrong so I suppressed it. from the straight community. and gender non-conforming— The stigmas surrounding HIV We have to stop degrading telling people that no matter added to that because people each other for being “too gay” what, it’s okay to be you. in our community believed or “too feminine.” We get that that the disease was a direct enough from people outside of punishment for being gay. the community and we can’t afford to do it to ourselves. Over the past 30 years, we’ve seen HIV infections Interesting that you bring among gay white men decrease that up, because a recent study significantly, while rates of out of Johns Hopkins found that infection among gay Black men Black gay men contract HIV are estimated to be as high as more than other races because of 46 percent. How does that make a sexual preference for “mascu- you feel? line men” and a misperception It makes me very sad, but that those men are less likely to 56 AIDS: 30 Years Is Enuf!

TREE ALEXANDER moved to the North Side year, after only being was afraid. of Chicago when I was together for three months, When the time came for 18. I was introduced to we were living together. me to pick up my results, so the gay clubs and bars, I became ill with a cold, many things were running Ithe late nights and early something I haven’t had since through my head. I wanted TREE ALEXANDER mornings, the alcohol and I was 2-years-old. I didn’t a negative result but I knew HIV Case Worker the sex. I began working, know how to deal with it and the chances were slim. I Age: 24 partying and enjoying life it seemed to get worse. He remember thinking, “They New York, NY on the North Side. I was now was there to take care of me say it only takes one time for in a neighborhood that was for almost three weeks, and the little swimmer to catch accepting of me. then I was back to work. He you.” I prayed that one time During the summer wasn’t working at the time hadn’t happened. After when I turned 19, I was and spent a lot of time at seeing him in that hospital working in a clothing store home (so he said). Another bed with his face thin and on Halsted and Roscoe six months passed and he ribs visible, I started to count streets. I saw this guy come in started to get sick. But this money. I know how much of and he was cute. He looked was more than a cold or “flu- an insurance policy my mom over and when I asked him like” symptoms. He began to had on me, so I was planning if he needed any help, he get weak, lose weight, got a her pockets. I didn’t feel gave me a smile. After that, Black spot on his tongue sick or like I was dying but I he smiled at me the entire and more. didn’t have much of a drive time he was in the store. He I tried to get him to to continue living. I knew began to leave, so I stopped the doctor, but he wouldn’t that if I were to pass away him and asked, “After all that, go. There was always some my mother would have a you not going to ask for my excuse. He said, “There’s too financial boost. number?” In a quick reply he many people in the ER and Now it’s my turn to go said, “Nope, but I will take everyone is dirty. That will into the back room and talk it if you give it to me.” We only make me more sick.” with the tester. “I’m sorry laughed and exchanged info He started to spend most to tell you, but you’re HIV- before he left. of the day in the bed. This positive,” she said with a He called me every day, went on until one day when straight face. I took a deep, and every day I was busy he couldn’t move any part of deep breath and replied working two jobs, so I told his body. After being rushed with a straight face, “OK.” him to call back. That went to the hospital, doctors said She asked me if I was really on for about a month. He that if I didn’t bring him in OK about five more times. I then started to show up at he wouldn’t have made it was truly in denial and my the store and tried to take through the night. thoughts were focused on me out for lunch, which We found out his status getting home and drinking never happened. I think it after three days in the nothing but orange juice for was because I saw him in the hospital, and I went to get the next two weeks. Then I parking lot across the street tested that same day. The ER wanted to boost my vitamin watching me. So another redirected me to the Ruth M. C intake so that I could return three months went by, he Rothstein CORE Center, which and show them that the first gave me a call, asked me out is a clinic for the prevention, test was indeed wrong. for a dinner date, and I care, and research of HIV/ My career has changed said “sure.” AIDS. He later told me that a bit. When I found out I was By December of that he’d thought he had “IT,” but HIV-positive I was working The History of the AIDS Epidemic in Black America, 2011 57

two people close to me because AARON THOMAS of this disease. One of them was hen I think about a woman who was born with a as a fitness trainer. Now I HIV/AIDS I transsexual medical condition. have committed myself to feel frustrated. She wanted love so much that HIV/AIDS care and pre- WI’m frustrated because the she trusted the wrong man and, vention. This came about national conversation about instead of protecting herself, when I would attend prevention has all but ceased took a risk that proved fatal. groups and hear all the to exist; because when I turn A lot of work needs to be AARON THOMAS horror stories of disclo- on the news there’s hardly any done to educate society about Legal Assistant sure. I also thought back discussion about the soaring transsexual, transgender and Age: 26 to my high school’s Sex Ed. rates of infection in certain intersex issues. The unhealthy Columbus, OH Class and just remember populations. I’m frustrated stigma and dehumanization hearing how to get tested because no one is talking of these communities is what and that HIV leads to AIDS. about the virus and what it is leads to situations where they I also remember that pic- medically—how it’s constantly contract the disease. Low ture of that guy with the evolving and changing. I’m self-esteem caused by people’s gonorrhea in his eye, that frustrated that instead of prejudice against human picture of the penis with banding together in this time diversity is what causes many warts the size of Reese’s of crisis, the Black community in these communities to fail to peanut butter cups, and has resorted to the blame game, safeguard their health. more. That’s what made demonizing people instead of If any of my sisters are me use condoms up until educating. I’m frustrated that reading this, know that your my ex convinced me that we still treat people living with life is a beautiful gem. Cherish we both were negative HIV as if they’re lepers. I’m yourself and your temple. We and “faithful,” what- frustrated that people are still all want love, but we have to ever that means. So where having unprotected sex without love ourselves first and foremost were the pictures knowing their status and the if we are to receive authentic of HIV? status of their partners. Lastly, love from someone else. You can say “one I am incredibly frustrated Regardless of the misguided million people die from that people are still testing fear and toxic hate in the world AIDS complications” all positive because they lack a directed at people who are born you want but it’s not real basic understanding of disease different, don’t believe the lies to someone until you tell transmission and prevention. that say you are unworthy. You them that 75 of those are a child of God just the way people are in your city, you are. Treat yourself kindly, 15 of which are in your ASHLEY LOVE because you deserve it. neighborhood and two ue to a lack of human from your high school, rights protections Ashley Love is the founder and so on. I think we need from the government of Media Advocates Giving more education on HIV/ Dand understanding from National Equality to Trans- AIDS worldwide, especially families and society, many sexual & Transgender People with youth, and the only Americans born transsexual and a popular contributor to way to do that is to show the Huffington Post. them a picture. Show and/or intersex, or that have ASHLEY LOVE people that HIV really a transgender identity, find Transsexual and does exist; it’s not just themselves in very vulnerable Transgender Rights something from T.V. or and dangerous situations. Advocate from the distant past. It’s Because of this alienation some Age: 30 right in your backyard. people in these communities New York, NY engage in unsafe behavior as a way to cope and survive, making them vulnerable to infection with HIV. I have lost 58 AIDS: 30 Years Is Enuf! JONATHAN GREG MALCOLM LEWIS WILSON VARNER s I waited for the nurse ut I just talked to n the early 90s, I had my to bring my results into him yesterday!” This first encounter with the the counseling room, is what so many devastating reality of chillsA ran down my spine. I of“ usB say when yet another IAIDS when my Uncle Mike JONATHAN LEWIS couldn’t believe I’d waited that member of the Ball community succumbed to the disease. He NAACP Regional long to get tested. I’d enjoyed a dies from HIV/AIDS related was emaciated and sick with Field Fellow fairly “risky” lifestyle in college, complications. The Ball pneumocystis pneumonia Age: 23 and even though protection Community is a sub-culture of and my family and I stood Baltimore, MD was a top priority, I’d had the the gay Black community that’s by his bedside until he was occasional slip-up and as I been alive since the early ’80s. finally freed from suffering. waited for my HIV test results Within this culture gay As I grew older I noticed the those incidents played over and “houses” serve as extended silence surrounding his death over in my mind. families and support systems and sexuality—subjects that When the nurse finally for queer youth and compete remained taboo in our family. walked in, she sat in front of me against one another in vogue When I came out as a gay and read my results: “Negative “Balls” for fun, awards, cash man, I was forced to navigate for HIV.” At that moment, I prizes and status. I have been the silence and discomfort couldn’t hear anything other a part of the Iconic House of that my family had regarding than those words. Hearing that Ultra Omni for nine years and homosexuality and their fears GREG WILSON I was HIV-negative lifted a the experience of losing my about me becoming HIV- Manager weight from my shoulders and peers to AIDS has become more positive like my uncle. REACH LA I vowed to never put myself in a and more frequent. So many My second encounter with Age: 29 situation like that again. of the kids in our community HIV/AIDS came when I learned Los Angeles, CA have been rejected growing that my mother was HIV- up, disowned by family and positive. At the time we’d only forced to go through life feeling begun to build a relationship. as if they aren’t worthy of She was doing time in a prison love. For this reason many of outside of New York City and them are also reluctant to get we hadn’t even had a chance to tested for HIV, fearing that a meet yet. I was in my freshman positive result might lead to year of college when I received further ostracization. Because a letter from her, disclosing I understand the different her HIV status. The news was MALCOLM VARNER barriers and challenges that the shocking and a lot to absorb. Outreach members of our community I don’t know whether she was Coordinator, face, I’ve been blessed with infected by a sexual partner Family AIDS Clinic the opportunity to help make or through intravenous drug and Education a difference. Last fall my use, but she made me promise Services organization, REACH LA, that I would never use drugs. Age: 27 hosted a “20 Days of Testing Substance abuse had cost my Columbus, OH Event” to encourage members mother and father a great of the Ball Community to deal; and for my mother, it’s learn their status before possible that HIV was an added our “Ovahness 5 Ball” in consequence. November. Through our efforts, Two years after receiving 14 young men were newly that letter, my mother passed diagnosed and carefully guided away. through the treatment and care process. The History of the AIDS Epidemic in Black America, 2011 59

where HIV is skyrocketing their reproductive health QUINCI MOODY among Black teen girls—most and sexuality. ne thing is clear: It’s of whom don’t even know time for women in they’re at risk. With the young our community to women I mentor, I make sure Otake control of their health. to instill the importance of I live in Washington, D.C. self-reliance when it comes to

QUINCY MOODY Founder of Women KALI VILLAROSA Achieving Visionary he topic of HIV Sitting there in my high over most of our heads. What Excellence came up in my ninth school health class, I was we see is the thrilling fantasy Age: 30 grade health class surprised by how little my of teen love. The main char- Washington, DC this year. As one peers knew about HIV. We acter in the series even ends Tof my classmates wrote the were writing down the facts up getting pregnant, think- letters H-I-V on the board, my being thrown at us in order ing that she could have un- teacher asked if anyone knew to do well on our next exam, protected sex with a vampire what these letters stood for. but the disease didn’t plague without consequences. Yet A few hands quickly shot into in the way it haunted those again we are exposed to mat- the air and, someone stated: who came before us. ters of sex, pregnancy and “Human Immunodeficiency My generation takes HIV known consequences, but for Virus.” Nodding his head, my for granted. For many of us, most, a breathtaking vampire teacher turned back to the it’s not as personal as it was seems worth the risk. board and began furiously for our parents and others HIV doesn’t feel like it KALI VILLAROSA scribbling statistics and facts who watched loved ones die kills. I know people who are High School Student about HIV/AIDS, things that from it. living with the disease, and Age: 14 we had all heard before. It In health class we also they seem fine. They take Brooklyn, NY was not until my teacher learned how to protect their medication and func- turned around and said, ourselves from sexually tion like everybody else. “You better write this transmitted diseases. Despite Magazine advertisements down because there is going the warnings and reminder for HIV drugs show happy to be a test,” that people “to use a condom every time” couples going out to lunch actually took out paper and no one seems to be follow- or riding bikes. None of these pencils and begin copying ing the rules. A very popular advertisements show some- the notes. show among my peers is 16 one who is sick or even dying Suddenly a boy in the and Pregnant. The title is pret- from the once deadly illness. back of the room picked up ty self explanatory, but the My cousin has HIV. I’ve known his head and asked, “If some- show involves girls having her my entire life, but just re- one with the virus sneezes on unprotected sex and having cently learned that she’s been you, does that mean you get to deal with getting pregnant living with the virus. She AIDS?” The room exploded at a young age. Those girls looks and acts like everyone with laughter as if that was could just as easily be getting else, so I never would have the stupidest thing they had infected with AIDS. And even guessed if I hadn’t been told. ever heard. But it soon qui- as we learn that exchanging I have not yet had a chance eted down when it became blood spreads HIV, we live in to discuss the disease with clear that he was completely a world obsessed with young her but I would like to. I want serious. My teacher calmly vampires. The Twighlight to know how she lives, how began going through the series, a huge teen phenom- she feels, and what medica- ways the virus can be trans- enon, is all about a bunch of tions she takes, because I ferred: vaginal secretion, beautiful blood-sharing crea- don’t want to be one of those blood-to-blood contact, se- tures. Is this supposed to be a people who take HIV for men, and breast milk. metaphor for HIV? If it is, it’s granted. 60 AIDS: 30 Years Is Enuf! TASHA JONATHAN PERRY COLEMAN t wasn’t until I was 23 individuals. Since the U.S. and joined the Peace is one of the most devel- ’ve heard people give all Corps that I actually oped nations, I expected kinds of reasons for why met someone who was to see a world of difference they don’t feel the need Ito get tested. I recall one Iopenly HIV-positive. As a compared to Botswana. I ex- JONATHAN PERRY Peace Corps Volunteer in pected HIV to be a problem conversation in particular when Community Africa, I was stationed at a still mainly for gay men. I ex- I’d asked a male associate of Organizer small clinic in a rural village pected those who were HIV- mine if he planned to get tested. Age: 25 and charged with mobilizing positive to have access to He said, “no” and explained New Orleans, LA the community around HIV. medical care and medicine. I that he’d already been tested In Botswana, the country expected HIV to be a disease once before and since then all of in which I’d been placed, that was on the decline. I his partners had been “clean” so nearly 1 in 4 adults was expected the type of work he didn’t need to bother getting HIV-positive. With infec- to be different. In Botswana, tested again. tion rates this high, it was there was a definite need for impossible to hide from HIV. community mobilization. I Everywhere you looked, HIV didn’t think that need would was there. Everything you exist in the U.S. did, HIV was there. Everyone To my surprise, my TASHA COLEMAN was either infected or af- expectations were com- College Student fected. The only disease that pletely wrong. The HIV Age: 23 mattered was HIV. Cancer, epidemic that I knew grow- Savannah, GA Diabetes, High Blood Pres- ing up in New Orleans had sure and every other disease transformed into a differ- all took back seats to HIV. ent, much larger beast. No Every week brought a new longer was HIV a problem funeral to a village of only for gay men but rather a 3,000 people. In Botswana, national problem. No longer I saw the many faces of HIV. was the disease invisible, it It was not a gay disease; it had a face—the same as in was a national disease. I saw Botswana. Once again I saw grandmothers who were the faces I thought I had left positive and struggling to behind in Africa. I saw the raise their deceased son’s grandmothers who were children. I saw boys born positive and struggling to positive to infected moth- raise their grandchildren, the ers who struggled with boys born positive to infect- the thought of telling their ed mothers who struggled future partners their status. I with telling their partners, saw men who were positive and the positive men who and turned to alcohol as turned to alcohol. a solution. The reality is that HIV is When I finished my just as bad here in the U.S. Peace Corps service and re- as it is in Botswana; and like turned to the U.S., I wanted Botswana, the disease is en- to continue working with trenching itself in the Black HIV-infected and affected community. The History of the AIDS Epidemic in Black America, 2011 61

NANCY WILLIAM REDD COUNCIL II TERRANCE y generation grew up remember when my GILBERT with multiple faces fraternity brother found t 16 years old, of AIDS, but I can’t out that his real brother I came out as a rememberM a single one being Ihad full blown AIDS. His gay Black man the face of a Black woman. We brother was 27-years-old at in the heart of NANCY REDD watched special broadcasts the time and contracted the A Author and Speaker the Bible Belt. That same in school, announcing the virus through unprotected sex year I became sexually Age: 30 deaths of Eazy-E and Ryan he had with a woman he met active and even though Santa Monica, CA White. The gritty indie film in a club. Ten months later, I knew the dangers of Kids, depicted the virus being he was diagnosed with full unprotected sex and had transmitted within a group of blown AIDS. The virus opened been told to use a condom, white teenagers, and the Oscar- him up to a host of infections I was never shown how to winning film Philadelphia that left him bedridden and properly do so. I was well humanized the plight of gay reliant upon family members aware of STDs but it never men affected by the epidemic. to help him perform basic body clicked in my head to use Throughout the 90s the media functions. He passed away protection each and every offered more and more real-life several months later. Not only time. I left my mid-sized stories of Americans struggling did this experience show me suburban-rural hometown WILLIAM COUNCIL II with HIV, but ignored the issue how destructive HIV can be for college, and that’s when College Student as it related to Black women to a person’s body, but it also discussions started to take Age: 24 contracting the virus through showed me how the virus can place about HIV/AIDS and Green Cove Springs, FL heterosexual intercourse. devastate one’s family and its painful effects. Sadly, this failure of community. In 2010, I took a job representation continues in the with the University of present, at a time when Black California at San Fran- women are among the fastest- cisco’s Center for AIDS growing populations infected Prevention Studies working with the disease. The only way on a research intervention to curb this trend is to demand focused on young Black honest dialogue surrounding men who have sex with sexual and reproductive health men between the ages of in our schools and churches. 18-29. I am now in the TERRANCE GILBERT We have to promote a culture process of conducting a Researcher where women can have research study focused on Age: 25 healthy attitudes about sex and ways to mobilize, treat, Dallas, TX sexuality and feel a sense of and prevent the spread of ownership over their bodies. HIV/AIDS through social Instead of taking cues from networking. men, Black women need to learn about sexual health from other women who can address the importance of self-respect and self-protection.

Nancy Redd is a New York Times bestselling author and speaker who has appeared on Good Morning America, The Today Show, Oprah & Friends. 62 AIDS: 30 Years Is Enuf!

PATRICE J. WILLIAMS IV can affect you cried, so I cried, too. My I’m going to have fun.” That’s even when you’re mother was no stranger to how Johnson ended his press not infected. I’ve my father’s wandering eye, conference in 1991. And he’s been living with and she assured me that done just that. Of course, HIVH for the last 16 years. she’d tested negative. he hasn’t beaten HIV, but PATRICE J. WILLIAMS Though my status is negative, My parents separated his life has gone on and he Journalist I’ve spent days in the hospital when I was a toddler, and has thrived. Nineteen years Age: 28 for it. It’s affected my sex life, although I had no recol- later, he looks healthy and New York, NY and it has caused endless lection of there ever being has gone on to be a New York anxiety and heartache. any love between them, I Times best-selling author and I was nine years old could tell that my mom was have great success with his when Magic Johnson an- just as devastated with the entrepreneurial endeavors. nounced he was HIV-positive. news as I was. But up until My father didn’t “go on” My best friend asked me if that point, my only frame of or “have fun.” He was admit- I knew what HIV was. I said reference was Johnson, who ted to the hospital for mul- yes, although I really didn’t. was healthy and strong. My tiple stays. The man who was The wannabe-know-it-all in 12-year-old self thought ev- fiercely independent had to me just changed subjects. erything was going to be OK. rely on the help of others for We rode our bikes to the park Three little letters couldn’t little tasks that now required and never mentioned snuff out my Superman. energy he didn’t have. While HIV again. After my father’s an- I was preparing to send out Three years later, I nouncement, the virus came college applications, his virus would eventually become to mean something more progressed to full-blown all too familiar with the to me than what was briefly AIDS. He eventually dropped virus. Johnson announced mentioned in health class. to 120 pounds. Eight years his status to a roomful of I would ask my teacher after being diagnosed, he reporters on Nov. 7, 1991, questions about life expec- passed on a Thursday morn- and my father announced he tancy and T-cell counts, when ing during the beginning of was HIV-positive one Sunday previously I had never said a my spring semester. after church in 1994. Unlike peep. Suddenly they weren’t Johnson’s press conference, just talking about some wasn’t the one with HIV, there were no cameras, illness in class; they were but the disease affected flashing lights or rapid-fire talking about my father— me without my being questions. My father was the man whose pug nose infected. My life was admittedly promiscuous and I had, who I shared inside Ichanged in ways I had never rarely used condoms. Though jokes with, and who loved to expected. My father had I didn’t realize it at the time, I recount the time he rushed antiretroviral drugs to fight was angry with him. Furious. me to the emergency room off the attack to his body, but How could he be so reckless? when I knocked my tooth out I was left to fend for myself. Was unprotected sex more attempting to jump from the There was no drug to help important than being around couch to the table. my pain, or at least not one to watch me grow up? At the One thing I did learn was that I was offered. As a teen- time, I still didn’t fully under- that HIV affects everybody ager, I wanted to be carefree stand the meaning of HIV, differently. Magic Johnson and feel naively invincible, but judging from my father’s wouldn’t be the model for but my father’s HIV status unusually serious demeanor what my father’s status constantly reminded me of and my older cousin’s tears, looked like. “I’m going to go life’s shaky ground. There was I knew it was serious. She on. I’m going to beat this, and no thought of what I’d wear The History of the AIDS Epidemic in Black America, 2011 63

BRENDA SENYANA to the prom or crushing have it also. For days after I t the age of seven, I on boys. My heart was too told him about my father’s heavy for those trivial teen- passing, he drilled me on my left Minnesota, the age affairs. status. Questions about my only place I’d ever calledA home, and ventured Anyone who’s ever HIV status don’t offend me. been in the caregiver Actually, it was the norm for to Uganda, the land where BRENDA SENYANA position knows the toll it me to do the same with any- I was born. It was 1994 and Researcher takes. Living with my mom one I was sexually involved the AIDS epidemic in Sub- Age: 24 and being away at school with. “When was the last Saharan Africa had reached New York, NY gave me a respite from time you were tested? How unimaginable heights. It the 24-7 care (that heavy many partners have you had seemed like everyone around burden fell on my aunt), but or are you currently with? me was either infected with the weekends and visits home Do you want to get tested disease or knew someone who involved preparing meals, together?” But these ques- was. I also noticed that people’s accompanying him to doctor tions seemed to make some fears of contracting HIV and visits and giving him his two men uncomfortable. Talking its looming death sentence dozen pills a day. It changes about HIV was a turnoff to perpetuated an ethos of secrecy you emotionally to see them but necessary for me. and shame. someone you love struggle. Long before I was even sexu- Today, in both Uganda and I felt weak watching my ally active, the thought of the United States, infections father. He was only in his HIV and AIDS loomed in the among Black women are rising 40s but had the body of an back of my mind. I was never at alarming rates. For many old man. My Superman had fearful of sex, but I grew up years and throughout many found his kryptonite. understanding the repercus- societies, women have been I didn’t know how to sions that can come along oppressed and treated with navigate being the child of with it. Unless people know inequity in sexual relationships. someone with HIV. If the my story, they don’t under- To this day they’re predisposed subject of my father ever stand why HIV is so impor- to biological, cultural and came up, either I received tant to me. But it’s serious, socio-economic factors that the sympathetic head tilt or and so am I about preven- make them disproportionately people wanted to drill me tion, testing and education. vulnerable to sexually with 20 questions. Of course It’s been 16 years since transmitted diseases, including there was the occasional HIV came into my life. I think HIV. person who made me realize about it every day that my As women we need to that no matter how much in- father’s not here. I would put ourselves first at all times formation is available on HIV, never minimize the struggle and actively protect ourselves some folks are still ignorant that those stricken with HIV against HIV/AIDS. We need to and mean-spirited. or AIDS go through, but feel empowered to say NO to During a heated argu- there are other victims as things that put us at risk and ment I had with my college well—those without a voice, disregard who or what we’ll lose boyfriend, he told me that who are changed forever in the process. my father must have been because of those three a “f-ggot,” and that’s why loaded letters. he died of AIDS. This wasn’t new to me. There was also Patrice J. Williams is a a guy I briefly dated who journalist whose work has thought that because my appeared in InStyle, Cosmo- father had AIDS, then I must GIRL!, and The Root.com. 64 AIDS: 30 Years Is Enuf!

WILLIAM BRAWNER Founder Haven Youth Center, WILLIAM BRAWNER Inc. t just 18 months from the horrible medica- ing and prayer to recover Age: 30 old, I had to tions I had to take to the from that betrayal. When I Philadelphia, PA undergo a blood debilitating side effects that finally built the courage to transfusion fol- were keeping me up at night. disclose again, a lot of people Alowing abuse I’d suffered at For years that support group insisted that I “had to be gay” the hands of a family friend. was the only place where I because they didn’t believe The transfusion was suc- felt comfortable opening up that a heterosexual could live cessful and I survived, but a about my experience living with HIV as long as I had and few months later my mother with HIV. To the rest of the be in such good shape. learned that the donor whose world I was energetic, charm- After a while it seemed blood I received had recently ing, handsome Billy, and I like those I encountered died from GRID (Gay-related never discussed my disease were more interested in immune deficiency)—the status. This worked for a debating my sexuality than original name for HIV. The while, but things got com- learning about the disease. doctor explained to her that plicated when I started to What people fail to realize is there was no cure for this become attracted to girls. that heterosexual Black men little-known disease and I Because of my reluctance make up a large portion of probably didn’t have much to disclose my HIV status, I those infected with HIV in our longer to live. Four years didn’t become sexually ac- country. Unfortunately, many later my mother received a tive until I turned 18. When I of these men don’t disclose phone call informing her that finally revealed my status to their HIV status for fear of be- treatment for my condition my girlfriend at the time she ing labeled and their silence was finally available. After handled the news well. We is killing our community. that call, she revealed to me were together for an entire Because of my experi- for the first time that I was year after that and broke up ence, I’ve dedicated my life HIV-positive. Even though I on what seemed like good to the fight against HIV/AIDS, didn’t understand what that terms soon after I left for but I can’t do it alone. It’s meant, I could tell that it college. time for other HIV-positive was something that hurt my But two years later the straight Black men to take mother very deeply. In order president of my university responsibility and stand up in to protect her feelings, I kept called to inform me that the this fight as well. my emotions bottled up for school had received an anon- years and suffered in silence. ymous letter alerting them to William Brawner is the When I turned 12, I my HIV status. I knew imme- Founder & Executive Direc- attended my first support diately that my ex-girlfriend tor of Haven Youth Center, a group meeting and finally was behind it, because she non-profit, providing services had the opportunity to share was the only person I’d ever to HIV-positive youth in Phila- what I was going through, told. It took years of counsel- delphia, PA. The History of the AIDS Epidemic in Black America, 2011 65

JURNEE SMOLLETT-BELL t’s one thing to read statistics and another to know people with the disease. Hydeia and I met 12 years ago and have since become best friends. HIV/AIDS is never far from my mind because she and another close friend Iof mine are living with the infection. They’re both talented, intelligent, young African Americans who have never been JURNEE sexually promiscuous nor used intravenous drugs. You SMOLLETT-BELL would never know by looking at them that a potentially Actress and deadly virus lurks in their bloodstreams. But it does. Thank- Activist fully, they’re each getting medical care that keeps them Age: 24 healthy. They live their lives, have fun, pursue their dreams, Los Angeles, CA have relationships and are careful to not pass the virus on to anyone else. They’re proof that HIV/AIDS doesn’t have to be a STEPH JONES death sentence, if you know your status. Most of my life I’ve volunteered with Artists for a New You’ve been vocal about South Africa, a nonprofit organization working in the U.S. the importance of HIV testing and South Africa to combat HIV/AIDS, assist children or- and even “tweet” your fans via phaned by the disease, educate and empower youth, and Twitter whenever you get tested. build bonds between our nations through arts, culture, and Is that you leading by example? our shared pursuit of social justice. Regardless of the country, Definitely. My Twitter is what frustrates me most is the lack of informative dialogue like my reality show and it’s within our community, churches, homes, and schools. That STEPH JONES interactive so my followers very silence is killing us, but it can be broken if we speak out Singer and join in. Whenever I say “I just and take action. Songwriter got my HIV test back and I’m Age: 27 good,” at least a hundred of Jurnee Smollett-Bell currently stars in the CBS series The Los Angeles, CA my followers hit me back and Defenders and in the NBC series, Friday Night Lights. tell me they’re going out to get tested that day. When people get that sort of message from important. Of course, HIV is do talk about so that you’re someone they relate to or one of those things. educating the nieces and the someone they respect they’re nephews, and the daughters and more likely to consider it for Has HIV/AIDS touched the sons about the disease so their own lives. your life personally? they know which route to take When I was a kid, my uncle in their lives. Another thing my How else have you used Duane died from AIDS, so I family didn’t talk about was the social networking to promote knew from an early age that it’s fact that Duane was a gay man. HIV awareness? nothing to play around with. I didn’t know what that meant One of the things I like to when he was alive. All I knew do to get close to my fans is get Did you find out that he was that he was my favorite on Ustream live and talk about had AIDS before or after he uncle. He was just so free and real things that are going on died? happy all the time. And the with real people. I also like to After. I’ve never said this thing is, if our family had been use YouTube for that because but I think my family was open with us about Duane’s a lot of my followers aren’t just ashamed that my uncle died life and what happened to him coming for the music; they’re from AIDS. They called it I would’ve loved him the exact coming for the message, too. pneumonia and kinda covered same way. I like to talk straight from it up like that. It’s something the heart about whatever’s on that they didn’t like to talk Follow Steph Jones on their minds and whatever’s about. But to me it’s what you Twitter @stephjonesmusic. 66 AIDS: 30 Years Is Enuf!

because my CD4 count was Around the time I stopped MAYO good. I didn’t start treatment taking the medication, I also again until I “aged out” at that lost my insurance and the MCCLINTON clinic and entered adult care doctors stopped seeing me, so I somewhere else. The doctor fell out of care for a while. After When you learned that there told me that my CD4 had some time passed I started to you were HIV-positive what dropped and recommended lose weight and I was getting was your doctor’s treatment that I start an antiretroviral sicker than usual. My friends recommendation? regimen. noticed the physical change MAYO MCCLINTON When I was diagnosed in and got really worried. One of Outreach Worker July ’05 my doctors told me that What was the process of them introduced me to a really and Spokesmodel I didn’t need to start antiret- finding the right treatment good clinic in Baltimore called Age: 29 rovirals because my body was program? Chase Brexton. The care I got Baltimore, MD fighting off the virus pretty well What made it hard for there was great because the on its own. They just advised me is that I have trouble people there assist you with me to slow down on things like swallowing pills. Since most everything. They don’t just tell drinking and to stay away from HIV medications come in pill you what to do; they actually drugs, but I wasn’t doing that form my doctor had to find a walk you through every step of anyway. I was told to focus on regimen that came in liquid the treatment process. healthy eating habits, which form. I had a lot of side effects meant I had to cut out fried with the first medications I was How was Chase Brexton foods and bake or broil the food on. Mainly diarrhea, headaches, different from the previous I cooked. I also started eating body aches, feeling nauseous at clinic? lots of salad and vegetables. times. Kaletra and Truvada are When I got to Chase Brex- It was hard in the beginning, the ones I really had problems ton they immediately knew how because I wasn’t used to eating with. to correct the side effects I was that way, but it’s something I having on those other treat- appreciate now. At that point I Were you ever tempted to ments. They made sure that I just had to be smart about what stop taking the medication your had my insurance together and I was putting into my body. doctor put you on? it felt like they wanted to do ev- Once I started having erything in their power to keep When were you started on really bad side effects, I did me healthy. At the other clinic HIV medications? stop. their position was, “You’re an I did a research study in adult, so we shouldn’t have the of fall of 2006, and that On your own? Or did you to hold your hand.” But they was my first experience with make the decision with your didn’t understand that I’d just medication. My doctors wanted doctor? transferred from a youth clinic to see how my body would I told her I’d stopped. Her and everything was still new to respond to antiretrovirals. response was, “You need to con- me. They were telling me to go tinue the treatment to remain down and sign up for medical Was treatment necessary at healthy.” I understood that but assistance, but I didn’t know that point? the side effects were ridicu- how. I’d never done it before. No, I didn’t have to start lous. It felt like the medication And when I’d ask for help it right away, but they told me was making me sicker than I they’d brush me to the side. to sign up for the study to see already was. I told her, “I hear At Chase Brexton, on the how I would do on treatment. I what you’re saying, but you’re other hand, I got one-on-one guess they wanted to train me not the one living with these assistance through that whole before I actually needed it. side effects. You have no idea process. They gave me the how this is making me feel.” information I needed and even Did you start a different called the medical assistance regimen after the study? When you stopped office to make sure they knew No, I still didn’t need treatment did you notice a how to help me when I got medication at that point difference in your health? there. The History of the AIDS Epidemic in Black America, 2011 67

Based on your experiences, getting treatment. I know other what steps should HIV-positive people who were afraid to get TIA HINES young people take to make sure tested before but finally went remember the day someone they’re getting the best possible and found out their status. I close to me revealed that care? think they saw me and realized she was HIV-positive. ITalk about the world shutting The first thing you have that no matter what the result to do is find a clinic where you was, they’d be okay. down. I didn’t know which feel comfortable. You can’t go one of us was more hurt. There to just any clinic and expect to For more information on is so much that comes with JUSSIE SMOLLETT get what you need. You have to Mayo and “HIV Stops with the disease that people don’t Singer/Songwriter/ find a place where you feel safe Me” visit hivstopswithme.org. understand. It’s not a walk in Activist opening up and telling people the park, no matter how much Age: 28 exactly what you need, because counseling and support people Los Angeles, CA they can’t help you otherwise. JUSSIE have access to these days. And don’t be afraid to ask ques- tions. If you don’t understand SMOLLETT something your doctor says, IDS. It’s murdered tell him you need it explained. I three friends, four linked into some good support associates and millions groups that helped me and I ofA people whom I haven’t think that’s very important for met, but respect and love. The young people as well. Also, you disease continues to threaten have to find the right social our friends, lovers and family worker. I didn’t have a good so- members. My question is why? TIA HINES cial worker at first, but the one I’ve volunteered with Writer I have now makes sure that I’m Artists for a New South Africa Age: 30 doing everything I need to do. and the Black Aids Institute Boston, MA She really goes the extra mile for almost half my life. Over 30 and I know she cares. million people worldwide are currently living with this dis- You were recently selected ease and half a million of these to be a national spokesmodel are African Americans, so as a for the “HIV Stops with Me” man… a Black man… a human campaign. Do you think being being… I’m forced to keep my open about your status has eyes open and my voice raised. helped others grow comfortable Black conservatives say with theirs? it’s the Black men on the “dl” Yes, and that’s the main (a term I hate) bringing it reason I wanted to be a part into the community. White of the campaign. The young conservatives still believe it’s people where I come from don’t a gay thing. I say, regardless of feel comfortable opening up these old school, antiquated about their status because they beliefs, the disease still exists, don’t see other people out there so what are we going to do that they can relate to. I felt like about it? We can’t simply throw this was an opportunity to be galas with rooms full of money that for people who feel like and feel it’s good enough. they’re in this alone. Ever since Nothing’s good enough until I started the campaign and the disease is gone. put it all out there, I’ve had so many people come to me and Jussie Smollett’s debut album, open up about their status or The Poisoned Hearts Club, will tell me about how they’re finally be released Summer 2011. 68 AIDS: 30 Years Is Enuf!

to see me regarding a “serious responsibility to take that work VENTON JONES and private medical condition.” to the next level. And it wasn’t When did you find out that When I read that line, I already just me—there were so many you were HIV-positive? had a feeling I knew what it people in my circle of friends There’s a lot to that story, was. I immediately went to who became positive that year so I’ll start at the beginning. a nearby clinic and got an too, and I just became more Around April 2007 I became HIV rapid test. This time the and more aware of the gap in very ill, and it got so bad that I test came back positive. At infections rates between Black VENTON JONES took myself to the emergency first, I was confused because and white men who have sex Activist & Community room several times. But I hadn’t had sex since the last with men (MSM). Leader instead of looking into it, the time I tested; after I left the Age: 27 hospital sex was the last thing Do you know how you Washington, DC hospital staff kept sending me home with packets of Motrin. on my mind. Later I found out contracted the virus? Finally, I went back and laid that I’d tested negative at the Through unprotected it all out on the table and told hospital because I was still in sex. The person I contracted it the attendant, “I’m Black, I’m the “window period” between from is someone I’d been in a gay, it’s possible that I’ve been infection and seroconversion, relationship with in the past exposed to HIV and I need to but I had the virus the entire and we’d recently resumed a be tested.” At the time I’d just time. more casual relationship. graduated with a public health degree and knew that the high Do you think health Knowing the risks involved, fever, night sweats and swollen care professionals in Black why did you decide not to use glands I was experiencing communities need to be more condoms? were textbook signs of Acute vigilant about identifying I’m going to tell you this, Retroviral Syndrome (or Acute patients that might be because it’s something that was HIV). They ended up keeping experiencing Acute HIV? true in my life and I’ve noticed me in the hospital for two days Without question. Doctors it in my clients’ lives as well. and when my HIV test came need to be educated on the As you get older it’s easier to back the result was negative so early symptoms of the virus engage in safe sex with someone the doctor sent and hospitals need to be you’ve just met, especially me home. equipped with the tests needed since those are the rules. But to properly rule out HIV as a as you get to know a person At the time were you diagnosis. In my situation, an more those rules lag more and satisfied with the “negative” ELISA wasn’t the test I needed. more everyday. It becomes a result? I should’ve been given an RNA stronger temptation each time. Completely. I was relieved test, which detects the virus In my situation, the person I because it was a period in my itself, not antibodies which was sleeping with is someone life when I needed a fresh develop weeks later. What’s I’d used condoms with when start anyway. After college upsetting is that people with we were together, but didn’t use I’d planned to go back home no real knowledge of HIV them when we started up again. to Dallas and work in public go into emergency rooms We weren’t in a relationship at health with a focus on Black with these symptoms and get that point but we had a history LGBTs but we were at the start misdiagnosed, only to find and “trusted” each other. of the recession and there out months or years later that Obviously that was a mistake. weren’t any opportunities. I’ve they’re HIV-positive. always had an intense need Did you talk to him after to serve, so after my hospital How did this experience you found out you had tested experience I signed up for the influence the work that you do positive? military hoping to become now? I called him and told him an army nurse. After I went I’d worked with HIV in I tested positive. He was just through the enlistment process, the past, but when I became silent the whole time because I I received a letter telling me positive and saw first hand believe he knew before I even that the Army physician needed what needed to change, I felt a said it. The History of the AIDS Epidemic in Black America, 2011 69

Do you think he was None. And that was mainly they disclose. I refused to live already aware that he was due to the inaccessibility of with that fear, and if I was going positive? condoms. I remember getting to help others I had to be open I know he was. my first HIV test at 15. I had to and come to terms with search online to find a place and my status. What were your feelings they didn’t even have condoms toward him at that point? out. I couldn’t go to my parents, How big of a role do socio- I didn’t feel negatively because when they’d ask if I economics play in the growing toward him because I don’t was having sex of course the HIV prevalence among Black think he intentionally gave answer was “no.” Safe sex just MSMs. it to me. We weren’t in a wasn’t a conversation that the In our field we tend to relationship at the time and people around me were having. rest on socio-economics but what he did when we weren’t in reality disenfranchisement together was his business. I Have you discussed your comes in many forms. It’s can honestly say that I wasn’t HIV status with your family? not just Black gay men from tricked. I wasn’t deceived. A lot It happened this past poor backgrounds that are of people have that story but Thanksgiving actually. I only vulnerable or those who that’s not what happened in my told my grandmother, but I’m have low levels of education. situation. At the end of the day, sure everybody else’ll start I had a college degree when the responsibility comes back finding out because I was I became positive and I’ve to me and the choices I was featured in the Washington encountered many others who making at the time. I was going Blade recently and discussed did as well. The commonality through a very difficult period my status in print for the first I find in those who seem to with the whole job situation, time. Before that I’d taken time be most vulnerable is that and on top of that I’d just come over the past three years to get they don’t have spaces where out to my family, which did comfortable with my diagnosis they can engage in honest and not go well. I’d also just started and learn to love myself with constructive dialogue about really dating and was—for it. I needed to be sure that— themselves, their sexuality and lack of a better term—“being even in a worst case scenario their every day struggles. grown.” In order to cope with where everyone I told was to everything, I started partying a turn their backs on me—I was Prevention campaigns lot and I wasn’t making the best strong enough to hold my head targeting the larger gay decisions in general. up, be myself and live the rest community have opened a of my life. I often hear gay men dialogue on the relationship How did you learn about who survived the first wave between recreational drug use sex growing up? of AIDS talk about how they and HIV prevalence. Is that Honestly? Online. I think used go to a funeral every day. a conversation that needs to anybody in my generation What they don’t realize is that be prioritized in the Black gay learned it the same way. Online, those funerals are still going community as well? chat lines. I learned from the on, but the difference is that, in Absolutely, because the guys that I made friends with 2011, young Black people are young Black people dying from there and we’d talk about the ones dying. We don’t hear the disease aren’t the ones who our sexual experiences. My their stories because even in take care of themselves, it’s the mom talked to me about sex, death we’re afraid to discuss ones with histories of substance but the lesson she conveyed their HIV status. Even people abuse and they aren’t your wasn’t about STD prevention, living with HIV who take care typical IVUs (intravenous drug it was about not getting girls of themselves feel the need to users). They’re using ecstasy, pregnant, which is something I shroud themselves in silence cocaine, meth—the party drugs didn’t have to worry about. and some hold onto that secret we don’t like to talk about. for the rest of their lives. It We also need to be clear about When you started having prevents them from becoming the fact that alcohol abuse is, sex how much of it was close to people because they’re indeed, substance abuse. The protected? scared of being pushed away if outlets that gay men have to 70 AIDS: 30 Years Is Enuf! acknowledge each other are often covered in drugs and alcohol, whether it’s the bars and clubs or online where men can post that they like to “party and play.” Because of the high concentration of HIV in our community we can’t ignore the relationship between recreational drug use and high-risk sexual behavior. It’s something that young people in particular need to be aware of.

Why is the visibility of gay Black leaders essential to the fight against Black AIDS? Because young people with positive role models and impacts are more likely to avoid the virus and those already infected are more likely to lead productive and healthy lives. Right now I have the most amazing mentors and friends around me and it truly makes all the difference. I didn’t have that when I was younger and going through my struggles, but I’m working to make sure that the next generation of Black gay men can’t say the same.

Venton Jones is a Senior Program Associate for The National Black Gay Men’s Advocacy Coalition and an alumni of The Black AIDS In- stitute’s African American HIV University. The History of the AIDS Epidemic in Black America, 2011 71

They’ve Got SWAG By Adrian Fussell

EW YORK—For- giveness was the day’s Word of Wisdom, and Elery GeorgeN sat next in line. “I forgave the person that gave it to me,” he said, “My boy- friend at the time. He was 30 and I was 19.” The group looked on, silent as Elery paused to gather himself, taking the hand of his close friend An- dre, whose lipgloss sparkled in the afternoon sun. “Every- day I think about it, but I’m make up a majority of those activists at ASCNY realized not what I used to be. I used newly infected with HIV in that their support services to cry about it all day long, the United States, but over for gay men with HIV were but I’m stronger now,” said the past several years, a not working. Programs at the the 24-year-old Borough significant shift in the de- center had been effective at of Manhattan Community mographic most at risk has teaching older men already College student, holding heaped growing pressure living with the virus how to back tears, lifting his head to on the youngest generation cope with the side effects reveal a wide smile. of the gay community. For of their medicine cocktails A silver and gold me- the first time, HIV transmis- and how to live a healthier dallion hung from a chain sions among gay Black men life. The youth participants around his neck, spelling out have outpaced those of needed something different, SWAG, for Sexy With A Goal, gay whites, the most recent a place where they could be like an inner city badge of reports from the Centers for themselves while coming to honor. All but recent ad- Disease Control and Pre- terms with their newly HIV- ditions to the eponymous vention show. Among gay positive status. While they support group wear the men in New York City, Black meet in Greenwich Village, necklace, an accessory that men aged 13-29 lead all they now take their aware- matches their manicured other demographics in new ness of HIV/AIDS back to fingernails and stylish hair- infections, according to New distant parts of Brooklyn and cuts. Yet for Elery and most York Department of Health the Bronx, hoping to erase of the other young men in statistics released in 2010. the stigma of being young, the room, this membership Black, and gay in the epicen- comes with a lifelong fee: HIV. WAG evolved out of ter of the epidemic. SWAG is one of several its parent organi- HIV is spreading in the new groups in New York zation, the AIDS young MSM community for a City providing a peer-to- Service Center New number of complex reasons peer forum on sexual health SYork, or ASCNY, as a safe say health officials, but one for a community of young space where the youth could of the primary factors is gay men badly in need of come together and learn to the stigma of gay sexuality help. Men who have sex educate their friends, peers among Blacks, a cultural bar- with men—or MSM—still and siblings. In late 2010, rier preventing many from 72 AIDS: 30 Years Is Enuf!

getting tested. “Just walking Boyd was awaiting the Training. The testing and in for care is a big issue. The results of his own HIV test outreach services at CHEST issues around being Black in February 2011 when Gary are primarily funded by the and gay are very different Sneed, a counselor from the National Institutes for Health, than being white and gay,” AIDS Service Center who which announced on April said Dr. Birnbaum, founder helped found SWAG, walked 25 that due to a $260 million and director of the Brooklyn- into the exam room, intro- budget cut, the size of nearly based HIV prevention orga- duced himself, and talked all of its research grants nization HEAT, for Health & Devon into visiting the would decrease. “There’s a Education Alternatives for group. combination of factors: the Teens. HEAT has now shifted “My first meeting was general economy and the re- its target demographic that Friday. It was raining duced philanthropic giving from young heterosexual that day, I’ll never forget in general, but then certainly women to the young gay it,” said Boyd, an account- this perception that HIV is men of East New York, Bed ing and finance student at not as big of a deal that it Stuy, and Brownsville in just Monroe College. Devon’s HIV used to be,” Dr. Parsons said. the past two to three years. test was ultimately negative, “The epidemic follows the A but he still made the group IV/AIDS is no and C subway lines,” said Dr. a part of his life. “I make it longer known as Birnbaum. “That’s just where to every meeting now. I feel a death sentence, they live.” more comfortable around as anti-retroviral them than I do with practi- medicineH can often keep an evon Boyd, a cally my own family,” he said. HIV-positive person alive 23-year-old SWAG Devon sometimes walks for a normal lifespan if the member, knows of with his 21 year-old brother patients adhere to their the issues well. His in the ballroom vogue- regimens. To alert the young rideD home from the SWAG ing scene, a combination gay community, the New meetings ends at the last of dance and homemade York City Department of stop on the C train, Euclid runway fashion born in New Health and Mental Hygiene Avenue in East New York, York during the 1960s and has tried to jolt them out where he was born and ‘70s. The HEAT program of complacency. In similar raised. Nearly all of Devon’s sponsors balls throughout fashion to it’s contentious friends are positive. the year, pairing the events anti-smoking and anti-obe- “Every time I turn with free HIV testing, but sity campaigns, the Dept. of around, a friend calls me and Dr. Birnbaum’s organization Health released an ominous says, ‘Oh I tested positive.’ will soon be forced to cut video in late 2010 titled “It’s And I’m like, what? We just back on the balls and other Never Just HIV.” It showed went through, we’ve just outreach events because of brief snapshots of anal can- been through this.” He sees funding shortfalls. cer and cracked bones from the stigma around HIV test- Health officials citywide osteoporosis. ing and gay sexuality as a are struggling to build pro- HIV prevention orga- community’s way of dealing grams that resonate with the nizations in New York City with adversity, passed down young men and encourage and nationwide criticized through generations. “We testing and prevention as the campaigns as needlessly are taught to be strong. You funding cuts loom in a post- fear-mongering. In a state- don’t talk about things like recession economy. “There’s ment, Gay Men’s Health Cri- that, you internalize it. Our certainly a money issue,” sis and the Gay and Lesbian mothers and grandmothers said Dr. Jeffrey Parsons, the Alliance Against Defamation were taught that anything founder and co-director of called the video “Sensation- like that, you just push it CHEST, the Center for HIV alistic and stigmatizing,” say- aside.” Educational Studies and ing that it unfairly portrayed The History of the AIDS Epidemic in Black America, 2011 73

HEAT and CHEST will soon be forced to treat a grow- ing number of young gay men with fewer resources, Dr. Parsons believes that creating more programs like SWAG and Brooklyn Men’s (K)onnect will prove crucial in stopping the epidemic. “The rates will continue to rise until we develop more programs that are going to particularly resonate with young people, particularly for the young men of color,” he said. The future of youth outreach in Brooklyn is equally tenuous. “We’re going to continue to have problems,”said BATF’s Tree Alexander. “In the next couple of years, there will be a continuous HIV rise in the MSM community.”

n the peer support groups and message boards, the line be- gay men as disease carriers Force, or BATF. As the poster tween socializing and and public health risks. informs passing commuters, Ilearning about HIV has been In February, scenes he has been HIV-positive intentionally dissolved, and from the N.Y. Dept. of Health since 2006. Alexander and the methods are working. commercial moved from the BATF saw the need for For Elery George, the SWAG YouTube to subway cars. The a youth oriented group for group has become a second grim ads inside the trains young men with HIV. In Feb- home. His own apartment sharply contrasted with a ruary 2011, he helped create is bare save for a mattress, different kind of awareness Brooklyn Men’s (K)onnect, a pile of textbooks, and his campaign adorning the an online forum organized pocket-sized dog named subway stations themselves. through social media for Amber. “Growing up, I On one of the posters at the young men who might be wanted to go to school and I 125th Street and Lexington uncomfortable with step- didn’t finish. Now I’m able to Avenue Station, a young, ping forward in person for be a kid,” said Elery, thumb- healthy looking man named help with living HIV-positive. ing through his African Tree stands before a New “For me personally, being studies notes before an York night scene, grinning infected and having been upcoming exam. “With my while beneath him read the homeless, I know how it HIV diagnosis, I took lemons words “Get Tested,” or “Posi- felt, I know what that’s like, and made lemonade,” he tive Since —.” being alone, being without said, now teaching others It’s Tree Alexander, resources,” the Chicago na- to do the same, very much 24, an outreach specialist tive said. the adult helping to save his for the Brooklyn AIDS Task As organizations like own generation from itself. 74 AIDS: 30Coretta Years Scott Is Enuf King! Leadership Matters Who’s Leading the AIDS Response in Black America

The 30 Most Influential Black AIDS Leaders

Leadership matters. Three decades after AIDS was discovered it has become a Black dis- ease with Black-Americans bearing the brunt of new HIV diagnoses, people living with the disease and annual AIDS related deaths. The Black community was slow to mobilize early in the epidemic and infection rates soared. But today, Black America is more active than ever in the fight against HIV and AIDS. Black leaders in various arenas have taken ownership of the disease and are working to prevent the spread of HIV, fight stigma, and increase access and utilization of appropriate care and treatment. Black America is now viewing the AIDS epidemic with a sense of urgency and the high number of Black people in decision-making positions across the country reflects that. In this chapter we’ve attempted to identify 30 of the most influential Black Americans in the fight against HIV/AIDS. Government Team Obama: making sure people who are infected get better Melody Barnes and care, eliminating disparities and Valerie Jarrett reducing new HIV infections 25 In the past two years President Barack percent by 2015. In 2010 Obama Obama’s administration has also spearheaded the effort for pushed forward to advance AIDS monumental changes in health care policy domestically. Last year the with the passage of the Affordable Care Act. administration released the nation’s White House Domestic Policy Council Director first and only national AIDS Melody Barnes has been involved in the strategy which aims to address several facets of development of the national AIDS strategy. the disease including investing in prevention, Valerie Jarrett, senior adviser to President 76 AIDS: 30 Years Is Enuf!

Obama, is also the chairwoman of the White Dr. David Malebranche, a physician and an House Council on Women and Girls, which has assistant professor of medicine at addressed HIV/AIDS disparities among women. Emory University’s School of Dr. Eric Goosby is the U.S. Global AIDS Medicine in Atlanta, has conducted Coordinator at the State Depart- an extensive amount of research on ment and heads all of the United gay Black men, and their HIV risk States’ global AIDS initiatives. Dr. and their behavior. Goosby was working as a young Dr. Beny Primm is a global expert on AIDS doctor in San Francisco in the and drug addiction. Primm is the 1980s when the AIDS epidemic started to founder and executive director of surface. He served as HIV/AIDS advisor to the Addiction Research Treatment President Bill Clinton. Dr. Goosby was the first Corporation, one of the country’s director of the Ryan White Care Act and served largest minority drug treatment as the chief executive officer of the Pangaea programs. Global AIDS Foundation. Congresswoman Barbara Lee got involved in the fight against HIV/AIDS when The Policy Makers she arrived in Washington. She has Dr. Helene D. Gayle is one of the early soldiers provided needed support for every in the fight against HIV/AIDS. She major piece of AIDS legislation worked at the Centers for Disease drafted in the recent past including Control and Prevention for 20 years, the Global Fund to fight HIV/AIDS which mostly combating AIDS. Dr. Gayle established a $15 billion global AIDS initiative directed the HIV, TB and Reproduc- and the President’s Emergency Plan for AIDS tive Health Program at the Bill & Melinda Gates Relief. Lee, a past Congressional Black Caucus Foundation. She has been appointed by the Obama chairwoman, also leads the Minority AIDS administration to serve as chair of the Presidential Initiative. Advisory Council on HIV/AIDS. Dr. Gayle now Maxine Waters Congresswoman , then the leads CARE USA, one of the world’s top humani- chairwoman of the Congressional tarian organizations. Black Caucus and an early HIV/ AIDS pioneer, led the effort to develop and later fund the Minority The Messengers AIDS Initiative with other mem- bers of the Congressional Black Caucus. The Veteran journalist George Curry, former Minority AIDS Initiative grew from a 1998 CDC NNPA editor-in-chief, is the AIDS meeting with Black leaders and HIV prevention coordinator for the NNPA partner- specialists, who were moved to action after ship. Curry writes stories about the discussing the devastating impact the AIDS epidemic for Black newspapers. epidemic was having on communities of color. Curry has covered the International AIDS Conferences in Mexico City, Toronto and The Caregivers Bangkok. Dr. Wilbert C. Jordan established the Oasis Clinic in 1979, which became the first clinic to serve the needs of Black people with HIV/AIDS. Since the Los Angeles clinic opened its doors at least 3,000 patients with HIV/AIDS have been treated. The History of the AIDS Epidemic in Black America, 2011 77

Team CNN During her critically acclaimed CNN Black The Activists in America series Soledad O’Brien A. Cornelius Baker is the senior communi- examined the alarming AIDS and cations advisor with the AED HIV rates among Black women and Center on AIDS & Community how they are coping with the Health. He heads the HIV Vaccine epidemic. Don Lemon, weekend Research Education Initiative for anchor at CNN, often reports on how the AIDS the National Institutes of Allergy epidemic affects African Ameri- and Infectious Diseases where he partners with cans. Whether it is new data on community leaders and arms them with informa- HIV/AIDS or new drugs released, tion for their communities about HIV vaccine Lemon always finds a way to relate research. how the story is important to Black Magic Johnson founded the Magic Johnson America by interviewing Black experts, advocates Foundation in 1991, the same year and people living with the disease. he announced he was HIV-positive. Sonya Lockett has led, Rap It Up, an HIV/ The beloved basketball giant’s AIDS awareness campaign targeted foundation and the AIDS Health- to Black youth, for a decade. The care Foundation have partnered campaign pushes culturally and opened five HIV/AIDS treatment centers in relevant HIV education and low-income communities of color across the prevention information using country. At least 1,200 people annually receive young Black people and the language they speak. medications including anti-retroviral drugs at Rap It Up dispels myths about AIDS, urges youth those clinics. The foundation also awards to get tested and works to demystify stigma community grants to groups working to promote surrounding the disease. AIDS education and reduction. Bev Smith host of The Bev Smith Show, Frank J. Oldham Jr. is president and chief which airs on the American Urban executive officer of the National Radio Networks, has raised her Association for People with AIDS. voice and others’ consciences about He advocates for policy, funding HIV/AIDS in the Black community. and treatment of people with HIV/ As a broadcaster she’s told various AIDS. Oldham, the author of two stories about the ways AIDS touches the Black books, also headed AIDS service organizations in community including stigma, myth and how the Chicago and Los Angeles. Oldham’s photo epidemic impacts groups such as inmates and exhibit, The Faces of AIDS, chronicled the reality women. Smith has also raised money for AIDS of the lives of people living with HIV/AIDS. charities. Phill Wilson is the founder and President of the Black AIDS Institute. He is also a member of the PACHA and a member of the coordinating committee for the 2012 Interna- tional AIDS Conference in Wash- ington DC. Industry Debra Fraser-Howze, who founded the National Black Leadership Com- mission on AIDS in 1987, is the senior vice president of government relations at OraSure Technologies. She partners with legislators to institute HIV testing and ensures that communi- 78 AIDS: 30 Years Is Enuf! ties in need of testing have materials they need to programs. The group also promotes Black make HIV testing possible. Church Week of Prayer which encourages Black churches across the country to use prayer to fight HIV/AIDS and the stigma around it. Entertainment Tony Wafford is the director of the National Danny Glover has used his star power to Action Network’s “I Choose Life” bring attention to the HIV/AIDS campaign. He was the founder of epidemic as it affects people of Afri- the Test One Million campaign and can descent across the globe. As a has used the sweet sounds of R&B UNICEF Goodwill Ambassador he music to get people tested for HIV brought attention to the epidemic by giving out tickets to major artists’ concerts in Tanzania. Glover also narrated the Tiny Tears after getting an HIV test. documentary about children living with AIDS. Hill Harper is famous for his acting roles but he’s also active in the fight against The Faithful HIV/AIDS. He is a national Bishop Charles E. Blake, who presides over spokesperson for National Black the West Angeles Church of God in HIV/AIDS Awareness Day. Harper Christ in Los Angeles, is the chief contributed to the book, Not in My executive officer of Save Africa’s Family: AIDS in the African American Commu- Children. The group has helped nity. He also played an inmate who was living more than 300 grassroots projects with AIDS in the film The Visit. in sub-Saharan Africa assist more than 90,000 Sheryl Lee Ralph has been raising her children affected by AIDS. divine voice for AIDS for the past Rev. Calvin Butts is the chairman of the 20 years. The actress and activist National Black Leadership Com- has hosted the Divas Simply mission on AIDS. Butts, pastor of Singing event which gathers top the Abyssinian Baptist Church in entertainers to raise awareness and New York, helps to unite and funds to end the stigma organize Black leaders around the surrounding AIDS. epidemic to advocate for AIDS policy and care on the behalf of Black people. Rev. Jesse Jackson, founder and president The Advocates of the Rainbow/PUSH Coalition, Marjorie Hill is the chief executive officer of established the PUSH for Life HIV/ the Gay Men’s Health Crisis in New AIDS program 11 years ago. Rev. York City. Her group advocates for Jackson advocated for AIDS policy the health of gay men and also as a candidate during the 1984 provides health care. The group presidential campaign. He was the first national also supports policy and research civil rights leader to publicly get tested for HIV. Rev. T.D. Jake into the health issues gay men face. s, pastor of The Potter’s House Marsha Martin is the director of Get church in Dallas, has done more Screened Oakland. The organization, based in than just pray for HIV/AIDS to go Oakland, California, teams with clinics, commu- away. He participated in the nity agencies and hospitals to seek the best ways National Conclave on HIV/AIDS to get communities tested for HIV while address- Policy for Black Clergy that ing their social, economic and cultural status. mobilized Black religious leaders. He also led his Pernessa Seele is the founder and chief church’s It’s Time to Step Up campaign that executive officer of The Balm in promoted HIV/AIDS awareness and testing. Gilead Inc. which takes a faith approach to combating HIV/AIDS. The Balm in Gilead has helped 20,000 faith houses institute health The History of the AIDS Epidemic in Black America, 2011 79

Rev. Ed Sanders established the Nashville’s Metropolitan Interdenominational Church. Since one of its founders died in the early 1980s the church has been working since 1984 to treat people living with HIV/AIDS. Civil Rights The NAACP: Today under the leadership of Chairwoman Roselyn Brock, and President and CEO Benjamin Todd Jealous, the NAACP is setting the bar on how Black institutions can re- spond to the AIDS epidemic. Julian Bond, former chair of the NAACP, helped get the civil-rights organization on board to address AIDS. Bond kicked off the 2006 national convention with a plea to members to get involved, get informed and get tested. Willis Edwards is the chair of NAACP’s AIDS Committee

80 AIDS: 30 Years Is Enuf! People You Might Not Know, Whom You Should!

There are Black Americans all over the country, who are providing leadership in ways both large and small. Some of them you may never hear about. Some of them you might hear or read about and not pay attention, but the work they do saves lives every day. Maybe even yours. These are people you should know.

Team Health and Human Services School of Medicine. The centerof the HIV/AIDS response in Amer- ica is the Department of Health and Human Dr. Mindy Fullilove is a psychiatrist and Services. Today many of the decision makers at professor who has researched the connection HHS are Black. They are responsible for admin- between AIDS and where people live. Fullilove’s istering HIV prevention strategies, care and work on “the psychology of place” has shed light treatment formulas, housing initiatives for people on how issues such as violence and urban renewal with HIV/AIDS and the implementation of mi- affect people’s mental and physical health. nority health initiatives. Christopher Bates is Marlene McNeese-Ward is the bureau the executive director of the President’s Advisory chief of the Bureau of HIV/STD and Viral Hepa- Council on HIV/AIDS. Dr. Kevin Fenton, the titis Prevention in the Houston Department of director of the National Center for HIV/AIDS, Health and Human Services. She heads the city’s Viral Hepatitis, STD, and TB Prevention with the efforts to reduce HIV diagnoses by providing CDC, develops and directs research projects and counseling and testing for the city’s 3.7 million forums related to HIV/AIDS and sexual health. residents. Dr. Garth Graham is the deputy assistant secretary for minority health in the Office of Rudolph H. Carn is the founder and chief Minority Health at the Department of Health executive officer of the National AIDS and and Human Services. Dr. Graham’s office drafts Education Services for Minorities Inc. in Atlanta. and facilitates health policy, including address- The organization works to educate the Black ing health disparities that affects communities of community on HIV/AIDS and provides long- Debra Parham Hobson color. is the associate term and transitional housing for people living administrator for HIV/AIDS in the U.S. Depart- with it. The group also sponsors the National ment of Health and Human Services’ Health African American MSM Leadership Conference Resources and Services Administration. She on HIV/AIDS and other Health Disparities oversees the $2 billion Ryan White HIV/AIDS conference. Program which funds medical care and support services for people without insurance who are Dázon Dixon Diallo is the founder and pres- living with HIV. ident of Atlanta-based SisterLove, Incorporated, Dr. Gregorio Millett, now at the CDC, was a women’s HIV/AIDS organization founded in the senior policy advisor in the White House Of- 1989 to advocate for HIV/AIDS education and fice of National AIDS Policy. Millett oversaw the treatment for women of color. Diallo is also office’s research, prevention and policy. In that adjunct faculty in women’s health at Morehouse role, Millett was a major contributor to the devel- School of Medicine’s Master of Public Health opment of the National HIV/AIDS Strategy. Program.

Dr. Ada Adimora is a physician and epide- Robert E. Fullilove, is the associate dean for miologist whose HIV/AIDS research work has Community and Minority Affairs at the Colum- focused on African Americans and particularly bia University Mailman School of Public Health. women. She is a professor in medicine and epi- Fullilove, a professor of clinical sociomedical demiology at the University of North Carolina sciences and the co-director of the Community The History of the AIDS Epidemic in Black America, 2011 81

Research Group, has explored connections be- information is dispensed about the epidemic’s tween addiction and HIV/AIDS. He also served impact on the Black community. Danny Bakewell on the Advisory Committee on HIV and STD Sr., chairman of the NNPA, and Dorothy Lavelle, Prevention at the CDC as a member and as its president of the NNPA Foundation, are support- chairman. ing the effort to get the Black press more involved in spreading information on AIDS on Blacks. Dr. Kimberly Smith is a global expert in Ernest Hopkins HIV/AIDS and people of African descent. She is the director of federal af- has presented her research in Brazil and South fairs at San Francisco AIDS Foundation. Hopkins Africa. She is an associate professor at the Rush oversees HIV funding, policy, and legislative University Medical Center in Chicago. activities at the federal, as well as state and local levels for San Francisco AIDS Foundation. Dr. Monica Sweeney is the assistant com- Valerie Spencer missioner in the Bureau of HIV/AIDS Preven- is co-developer and co-facil- tion and Control, New York City Department of itator of the Transgender Leadership Academy, a Health and Mental Hygiene. In that role she has collaborative effort of the Los Angeles Transgen- led condom use and HIV testing efforts in New der Youth Consortium and the FTM Alliance. York City. She created Los Angeles County’s first curricu- lum addressing transgenderism from a people of Steve Wakefield is the Legacy Project direc- color perspective. tor at the HIV Vaccine Trials Network in Seattle. Kai Wright He works to combat the lack of trust people of is the editorial director at Color- color have against the medical system and the lines.com. Wright’s work, including reports from government and increase their participation in Africa, has revealed the intersections of politics HIV vaccine trials. of sexuality, race and gender as they relate to health, especially HIV/AIDS. He is the author Hydeia Broadbent was born with HIV to a of Drifting Toward Love: Black, Brown, Gay and mother who was addicted to drugs. Since she was Coming of Age on the Streets of New York. about six years old she’s been a profound speaker Toni Young is the executive director of the who has raised awareness about the impact of Community Education Group in Washington AIDS on children. For the past two decades she DC. Young is also a member of Mayor Vincent C. has continued to inform people across the globe Gray’s host committee for the International AIDS about AIDS. Now at age 27 she lectures frequent- Conference to be held in D.C. next year. ly and continues her activism. Sandra Evers-Manly is the vice president Marvelyn Brown, often called the accidental of corporate responsibility for the Northrop activist, learned she was infected with HIV at age Grumman Corporation and the president of the 19. Brown’s fear spurred her to action. She wrote Northrop Grumman Foundation.She oversees about her experience being infected by her teen- Northrop Grumman’s philanthropic contribu- age sweetheart and alienated by her community tions including those to HIV/AIDS agencies and in the book The Naked Truth: Young, Beautiful, charities. and (HIV) Positive. Brown, now 27, runs her own global HIV/AIDS consulting agency, Marvelous Linda Villarosa is a journalist who has been Connections, which she founded in 2007. writing about the AIDS epidemic and its impact Team NNPA on the Black community and Black women since the early days of the disease. She is working on Danny Bakewell Sr., Dorothy Levelle. The a profound documentary about AIDS in Black Black press helped in the fight for civil rights last America, The Age of AIDS, with filmmaker Re- century. Now they’re taking up the fight against nata Simone. The film has been described as And the spread of HIV/AIDS this century. In 2009 the the Band Played On for Black America and Eyes National Newspaper Publishers Association, a on the Prize for AIDS. Previews of Villarosa’s trade group of 200 Black newspapers, joined the anticipated film are emotional, insightful and Obama administration’s Act Against AIDS Lead- informative. ership Initiative which informs the Black com- munity on the AIDS epidemic. Medically sound Archbishop Carl Bean, who leads the Unity 82 AIDS: 30 Years Is Enuf!

Fellowship Church, is the founder of the Los Angeles-based Minority AIDS Project. The History of the AIDS Epidemic in Black America, 2011 83 Leaders to Look Out For These Black Americans are providing leadership within professions in areas that cover the spectrum from mass-market entertainment companies to community-based non-profit organizations. They are dedicated to the cause and work diligently to educate and serve the African American community. Be on the look out for these exceptional women and men.

Shavon Arline: director of health programs, Amanda Lugg: director of advocacy and mo- NAACP bilization, African Services Committee

Lisa Fager Bediako: project coordinator, Leisha McKinley-Beach: HIV prevention Congressional Black Caucus Foundation’s ACT program manager, Georgia Department of Com- Against AIDS Leadership Initiative munity Health

Steven C. Bussey: chief executive officer, Robi Reed: vice president of talent and casting, Harlem United Community AIDS Center Black Entertainment Television

Rashad Burgess: chief, Capacity Building Waheeda Shabazz-el: community organiz- Branch of the Division of HIV/AIDS, Centers for er and trainer, Community HIV/AIDS Mobiliza- Disease Control and Prevention tion Project

Dr. Yvette C. Burton: chief executive officer, James Wellons: president and chief execu- Arcus Foundation tive office of the GLBT cultural event Fire Island Blackout Ebony Johnson: North American commu- nity liaison, International Community of Women Patrick Wilson: researcher and professor at Living with HIV/AIDS Columbia University who focuses on research related to HIV risk and prevention, ethnicity and Keith Green: director of federal affairs, AIDS sexuality among gay men Foundation of Chicago

Jeffrey C. King: executive director, In the Meantime Men’s Group, Inc.

Kali Lindsey: senior director of federal policy, Harlem United Community AIDS Center Cornelius Baker We Have the Tools An Expanding Biomedical Prevention Toolkit

As the epidemic’s third decade draws to a close, we appear to have entered an unprecedent- ed era of medical advances in the prevention of new infections. These developments, which punctuate the end of the epidemic’s 30th year with an exclamation mark, suggest that we are on the cusp of extraordinary new opportunities to achieve long-term success against one of the most serious health threats of our era. While historic breakthroughs on HIV treat- take steps to avoid transmission each time they ment long ago transformed the medical manage- engage in potentially risky behavior. And there ment of HIV infection, progress in preventing are critical gaps in our prevention continuum; for new infections has been much slower. Clinical example, although women are more physiologi- trials have documented the efficacy of programs cally susceptible to transmission during penile- to promote safer sexual behavior, but these vaginal intercourse than men, they have lacked research results have been difficult to replicate in access to a prevention method they could initiate the real world.1 Condoms may be highly effec- and control on their own. tive in preventing transmission, but many people Yet in rapid succession in the last several don’t use them.2 And early optimism on the years, researchers have demonstrated the power- development of a preventive vaccine has given ful efficacy of a range of new prevention tools. way to recognition that the search for a safe and Some of these new approaches offer long-lasting effective vaccine will be long and difficult. protection against infection, avoiding the reliance Many factors have contributed to disap- on user-dependent approaches. Others address Apointing results in HIV prevention. Far too key gaps in the prevention toolkit. often, decision-makers have failed to aggressively As this article explains, some of the recent implement proven prevention strategies.3 In 2010, advances are so radical that they upend many only four cents of every dollar spent by the fed- historic assumptions about how to address AIDS. eral government on HIV were allocated for Indeed, to capitalize on these new tools, it will HIV prevention.4 be necessary to adopt entirely new approaches As serious as the lack of political support for to controlling the epidemic. As we enter the HIV prevention, has been the shortage of effec- epidemic’s fourth decade, an AIDS response that tive prevention tools. Most notably, the preven- has become institutionalized and set in its ways tion toolkit has lacked approaches that offer confronts the urgent need to rethink long-held lifelong protection. Key risk reduction strate- practices. gies, such as condom use, require individuals to 86 AIDS: 30 Years Is Enuf!

Treatment as Prevention the epidemic’s trajectory, these research find- ings will need to be translated to the real world. erhaps the most radical of recent devel- Currently, the U.S. falls far short of what will be opments is the growing recognition, required to capture the prevention benefits of based on a rapidly expanding body of treatment. Due to key gaps in our approach to evidence, that treatment itself has a HIV—including late diagnosis of infection, inad- P equate linkage to quality care, and sub-optimal central role to play in efforts to prevent new in- fections. In May 2011—less than a month before treatment adherence—federal health officials es- the 30th anniversary of the first official report timate that only about one in four (26 percent) of of AIDS—researchers for the National Insti- people living with HIV are currently in care and tutes of Health announced that a multi-country experiencing successful viral suppression.9 The study of antiretroviral therapy for HIV preven- fact that little, if any, progress has been made in tion had been terminated four years early due reducing new infections in the 15 years in which to overwhelming evidence of efficacy.5 Accord- Highly Active Antiretroviral Therapy has been ing to the study involving more than 1,700 available in the U.S. merely highlights how far we couples residing in four different continents, are from realizing the potential of treatment starting antiretroviral therapy early appeared as prevention.10 to be 96 percent more effective in preventing The latest NIH findings suggest that radical transmission to an uninfected partner than changes are needed in the country’s response to waiting to initiate therapy until the infected AIDS. For starters, it will be essential to revisit individual’s CD4 count fell below 250 cells per national guidelines on when to initiate therapy. cubic millimeter. As more evidence has become available regarding The NIH study (known as HPTN 052) was the benefits of early treatment—and as treatment merely the latest and most emphatic piece of regimens have improved over time, with fewer evidence that antiretroviral therapy reduces the side effects—federal health officials have recom- infectivity of people living with HIV. The fact mended earlier initiation of treatment, with cur- that treatment dramatically lowers viral load (i.e., rent guidelines calling for initiation once the pa- the amount of virus circulating in the blood) in- tient’s CD4 count falls below 500.11 However, the evitably led to the expectation that therapy could most recent NIH study used a so-called “test and reduce the odds of transmission. Studies have treat” approach, with therapy initiated as soon as consistently correlated the likelihood of trans- an individual tested HIV-positive, including in mission with the infected partner’s viral load.6 individuals with CD4 counts as high as 550. More recently, studies in Vancouver7 and San These new results suggest that early initia- Francisco8 have found an association between tion of therapy could significantly slow the rate reductions in community viral load due to treat- of new infections. According to mathematical ment scale-up and declines in incident modeling undertaken by experts at the World HIV infections. Health Organization, a test-and-treat approach in Although the NIH study is the most compel- sub-Saharan Africa would sharply lower the rate ling evidence to date for antiretroviral treatment of incident infections and potentially permit the as prevention, it leaves a number of questions still region to transition toward the ultimate elimina- outstanding. Given that nearly all the couples tion of HIV.12 However, a test-and-treat approach enrolled in the study were heterosexual, the ap- potentially raises important ethical and logistical plicability of the findings to gay and bisexual men questions, calling for individuals to be pre­ remains unclear. Although one would expect the scribed powerful medications not for their own mechanisms of action of antiretroviral therapy to health but rather for the benefit of others. Trials be the same in gay men as in heterosexuals, the are currently underway both to ascertain the fact that the likelihood of transmission during population-level effects of treatment as preven- anal intercourse is substantially greater than tion and to identify the optimal time at which with vaginal intercourse raises questions about antiretroviral therapy should be initiated. Were whether gay men would reap the same degree of these studies to find that therapy is medically protection as the straight couples enrolled in the beneficial at any stage of HIV infection, some of NIH trial. the ethical questions surrounding test-and-treat In addition, to have a meaningful impact on could be resolved. The History of the AIDS Epidemic in Black America, 2011 87

The NIH results also indicate that major As of May 2011, nearly 8,000 patients were on changes are needed in the way testing and treat- ADAP waiting lists, with 14 states having taken ment services are administered. Currently, the steps to restrict drug access since 2009.14 Ex- U.S. relies on a largely passive approach to service panding eligibility for antiretrovirals beyond the delivery, reflecting a mindset of “build it and they current 500 CD4 cutoff will merely add to budget will come.” Yet while the U.S. has established pressures for ADAP programs, at a time when fis- an impressive national network of testing and cal austerity is being promoted by both treatment services, the reality is that many people political parties. who need these services are not using them. Moreover, there are potential questions This is especially true for Black Americans, who about whether third-party payers would actually disproportionately experience access barriers and cover early initiation of antiretroviral therapy in deterrents to service utilization. For example, in the absence of evidence that early treatment actu- a recent CDC-sponsored 21-city study of gay and ally confers a medical benefit on the HIV-positive bisexual men, Black men were significantly more individual. Historically, “medical necessity” has likely than other men to have undiagnosed been the standard for determining whether pub- HIV infection.13 lic sector payers have an obligation to reimburse Closing the holes in the HIV safety net that a particular treatment. Medicare, for example, is presently inhibit realization of the full potential required to pay for services that are “reasonable of treatment as prevention will demand a much and necessary for the diagnosis or treatment of more proactive and aggressive approach. Testing illness or injury to improve the functioning of a services must not merely be made available, but malformed body member.” A specific statutory they must be routinized and aggressively promot- mandate may override the medical necessity test ed. Linkage to care will need to depend less on in particular cases, but this would require con- referrals and more on rigorous follow-up after a gressional action. positive HIV test result. And patients on antiret- As the universe of individuals eligible for roviral treatment, especially those who confront antiretroviral drugs expands, the need to reduce multiple life challenges, will require more than per-patient treatment costs becomes ever more information on the importance of treatment urgent. American health consumers pay the adherence, but evidence-based, client-centered world’s highest prices for pharmaceutical prod- support services to overcome adherence barriers. ucts, in part due to the lack of sufficient bargain- The need for seamless care and treatment ing power by the public sector to drive down also raises questions about the optimal uses of costs. While the enormous profits reaped by public health surveillance. Currently, HIV-relat- big pharma from American consumers enabled ed information collected by state and local health drug companies to offer sharply lower prices in departments, such as positive HIV test results or developing countries, which facilitates treatment AIDS case reports, help inform policy develop- scale-up in the countries most heavily affected by ment and programmatic targeting. However, the HIV, the increased use of antiretrovirals for pre- growing number of jurisdictions that also track ventive purposes will inevitably call into question viral load results possess important information the ability of U.S. public programs to continue to regarding breakdowns in the delivery of care and pay top-dollar prices for these medicines. treatment services. If surveillance data reveals Perhaps the greatest “paradigm shift” that that a patient that previously had suppressed vi- will be needed in the AIDS response is to tran- rus is showing signs of treatment failure and viral scend the historic silos of HIV “prevention” and rebound, should the health department contact “treatment.” Since the epidemic’s first decades, the treating physician to determine if appropriate prevention and treatment have been regarded action is being taken? These and other difficult as separate domains. CDC has been primarily questions will need to be considered if the U.S. is responsible for funding HIV testing services and to ensure full realization of the promise of treat- prevention programs, while treatment and care ment as prevention. have been the responsibility of other agencies, The cost implications of treatment as preven- notably the Center for Medicare & Medicaid Ser- tion will also need to be tackled. Already, AIDS vices and the Health Resources Services Admin- Drug Assistance Programs (ADAPs) are strug- istration. Coordination between these agencies gling, as demand increasingly outstrips funding. has often been poor or non-existent. 88 AIDS: 30 Years Is Enuf!

The Syndrome of Kaposi’s Sarcoma and Opportunistic Infections An Epidemiologically Restricted Disorder of lmmunoregulation

n June and July of 1981 the Centers for Disease Control (CDC) reported to the medical community the alarming and unprecedented occurrence of Kaposi’s sarcoma, Pneumocystis carinii pneumonia, and other severe opportunistic infec- tions among apparently previously healthy homosexual men in the United States, Iwith a concentration of cases in New York and California (1, 2). Soon thereafter more detailed reports appeared in the literature clearly documenting this unique pattern of disease (3-6). The number of cases being recognized is increasing, with at least one case per day being reported to the CDC. The current total is 290 recognized cases, making this illness a public health problem of essentially epidemic proportions for a particular segment of our society. The common denominator in these subsequent infections or Kaposi’s sarcoma patients seems to be a profound immuno- resulting from the underlying immunosup- suppressed state, particularly among the pression originally caused by cytomegalo- patients with severe opportunistic infections virus. This hypothesis is not unreasonable (4-6). Virtually all the patients studied have because cytomegalovirus can cause tran- manifested a severe acquired immunode- sient immunosuppression in normal hosts ficiency that was selective; cell-mediated (7). The likelihood of frequent re-exposure immune function, as measured by in-vivo and reinfections with cytomegalovinis (delayed cutaneous hypersensitivity) and among persons with a high degree of sexual in-vitro (T lymphocyte function) testing, promiscuity within a confined group could was selectively impaired, whereas humoral conceivably lead to a state of profound and immune responses appeared to be intact apparently permanent immunosuppression by both in-vitro testing and the presence of directly related to recurrent viral infection, normal in-vivo antibody titers. One study (4) as opposed to the clinically insignificant found that inducer or helper subset of T cells degree and duration of immunosuppression was selectively impaired with a resulting usually seen in hosts with a single exposure. reversal of the ratio of inducer/helper T cell However, a counter-argument can be made subset to suppressor/cytotoxic T cell subset that patients who are immunosuppressed in favor of a selective predominance of sup- for other reasons, such as iatrogenesis, also pression. The types of opportunistic infec- have a high incidence of cytomegalovirus tions that these patients developed indicat- infections (8). Therefore, it is possible that ed the selective impairment of cell-mediated the immunosuppressed state is caused by immunity; of particular note were infections other factors and cytomegalovirus infection with P. carinii, Cryptococcus neoformans, is merely a consequence of this immunosup- Candida albicans, Mycobacterium tuberculo- pression. Similarly, it is likely that the other sis, Mycobacterium avium-intracellular, and opportunistic infections as well as Kaposi’s several others. Cytomegalovirus and herpes sarcoma are secondary to the immuno- simplex virus infections were strikingly pre- suppression. Thus, the primary cause of the dominant, both with regard to documented immunosuppression in this syndrome is cur- infections and serum antibody titers indicat- rently unknown. ing recent exposure. In this issue, four additional reports Cytomegalovirus has been thought to (9-12) give insights into the further ramifica- be the primary causal agent in the induction tions of the syndrome. The finding of a selec- of the immunosuppressed state (4), with tive depletion of the inducer T cell subset The History of the AIDS Epidemic in Black America, 2011 89

is consistent in all four reports. Whatever well and nonhomosexual men with Kaposi’s agent or agents—acting independently, in sarcoma. This finding suggests that the com- combination, or synergistically—are respon- mon denominator of the syndrome is indeed sible for the noted immunosuppression, a severe disorder of immunoregulation, the the remarkable feature of the defect is the underlying cause of which is unclear. De- apparent selectivity for a specific immuno- pending on the severity of the immune de- regulatory T cell subset. Because the inducer fect, the precise genetic profile of the host, T cell subset is responsible for the induction as well as a number of other unrecognized of antibody responses to T-cell-dependent factors, a given person may develop Kaposi’s antigens (13), there is an apparent paradox sarcoma without other associated infections, noted in the current reports (9-12) and in opportunistic infections in the absence of previous studies (4-6): Unexpectedly anti- Kaposi’s sarcoma, autoimmune disease, or body responses are preserved. This finding, a combination of all of these. In this regard, however, should not be surprising because it is highly likely as more cases are reported even within the inducer subset of T cells, and carefully studied that a wider spectrum there are likely to be subsubsets of cells that of associated diseases will become apparent. selectively induce cell-mediated versus hu- Despite the important new information moral immunity. Thus, it is quite conceivable made available in the four reports in this that a person can have selective impairment issue, critical questions remain unanswered. of the ability to induce a cell-mediated im- Paramount among these questions are those mune response with relative sparing of the relating to the epidemiologic aspects of the inductive function for humoral responses. syndrome: why homosexual men and why Furthermore, suppressor-effector function of occurrence or recognition only as recently as the suppressor T cell subset (OKT8) requires 1979? With regard to the latter point, it now induction by an inducer (OKT4) subset of appears that beyond question this syndrome cells (13). Even certain suppressor cells need is truly a new disease. Monitoring of cases an intact inducer T cell subset for normal of P. carinii by the CDC (14) as well as careful expression of suppressor function. Although documentation of cases of Kaposi’s sarcoma most studies up to this point (4-6, 9, 10, 12) render it virtually impossible for more than have indicated a predominance of immuno- an extremely small number of cases to have suppression in this syndrome, the report by gone unrecognized before 1979 (14). Some Morris and colleagues (11) on the occurrence recent change, therefore, seems to have of autoimmune thrombocytopenic purpura occurred within the unique epidemiologic among homosexual men in the absence of confines of the male homosexual population opportunistic infection or Kaposi’s sarcoma that has been expressing itself only over the raises an interesting alternative possibility. past 2 to 3 years. Is there a new virus or other Their patients who have relative increases in infectious agent that has expressed itself first numbers of phenotypically identified sup- among the male homosexual community pressor cells may have ineffective suppressor because of the unusual exposure potential cell function related to a deficiency of the within this group? Is this an immunosup- OKT4 inducer of the OKT8 suppressor cell, pressed state due to chronic exposure to a thus leading to or perpetuating an auto­ recognized virus or viruses? Is this illness due irnmune state. The authors’ suggestion that to a synergy among various factors such as the syndrome should be termed a defect in infectious agents, recreational drugs, thera- immunoregulation rather than strictly an im- peutic agents administered for diseases that munosuppressed state is appropriate. are peculiar to this population such as the The complexity of the syndrome be- “gay bowel syndrome,” or is this illness due comes even more apparent from the study to a combination of all of these factors? of Friedman-Kien and colleagues (12) who re- Of note is the geographic clustering of port a significant elevation of the frequency cases with almost half of all recognized cases of the HLA-DR5 haplotype in homosexual as being reported from New York City, and the 90 AIDS: 30 Years Is Enuf!

vast majority of cases reported from New the onset of clinical disease. York, Los Angeles, and San Francisco (14). If Aggressive therapeutic approaches to this clustering represents a real phenom- the infections in these patients have in many enon, then it is likely that risk factors for the cases been frustrated by the recurrence of syndrome are not randomly distributed in infections and death in an extraordinarily the nationwide homosexual community high proportion of patients (4, 6, 9, 10). Un- (14). In this regard, it is unclear whether the fortunately, the immune defect in patients predominance of this syndrome in these with this syndrome seems to be persistent three cities relates to the unusual lifestyle even after they recover from the oppor- of the homosexual men in these locations tunistic infection that brings them to the or to the presence of common sources of attention of a physician. Thus, the question possible primary infectious factors. Still, the arises concerning therapies for the persis- questions of why now and why this group tent immune defect. Foremost among these remain unanswered. The CDC Task Force on therapies would seem to be immunologic Kaposi’s Sarcoma and Opportunistic Infec- reconstitution with normal immunocom- tions currently is examining a broad range of petent cells. However, the difficulties that epidemiologic, virologic, toxicologic, immu- accompany transplants of nonhistocompat- nologic, and genetic factors in an attempt to ible lymphoid tissue (such as bone marrow) shed light on these questions. Precise delin- currently render this approach impractical eation of risk factors for the syndrome (such for extensive use. as sexual practices, drug usage, and virus Clearly, this extremely important public exposure history) rnay be difficult because health problem deserves intensive investi- individual cases are now being recognized gation, and the CDC is to be commended that lack one or all of these features. In fact, in rapidly deploying a task force to investi- not all patients are homosexual and not all of gate this problem. Important information them are even men. The CDC Task Force has of scientific interest may ultimately result been informed of at least 27 heterosexual from study of this syndrome, such as a more men and 10 women with the syndrome. precise delineation of the relation between However, several of the heterosexual men immune defects, viral infection, and onco- and most of the women were users of illicit genesis. However, the immediate goal that drugs. Determination of the factors or com- must be recognized and vigorously pursued binations of factors (whether drugs, virus, or is the designation of resources and energy others) that link homosexual men with these to the solving of the mystery behind this other groups will obviously be critical to the extraordinary disease, which currently seems understanding of the cause of the syndrome. to selectively affect a particular segment of Furthermore, because the predominant our society. The population that currently is and immutable feature of this syndrome is affected deserves this effort. Furthermore, the striking selective and persistent immune because we do not know the cause of this immune dysfunction in virtually all patients, syndrome, any assumption that the syn- it is imperative to determine the overall drome will remain restricted to a particular baseline immune status of the population segment of our society is truly an assump- of homosexual men who do not have the tion without a scientific basis. (Anthony S. syndrome and to identify risk factors for the Fauci, M.D.; National Institutes of Health, development of immune dysfunction before Bethesda, Maryland)

Likewise, at the level of service planning and sive model in which preventive interventions are delivery, coordination seldom occurs. Under leg- infrequently integrated. And many prevention islative and regulatory mandates, most states and workers in community-based agencies are either localities have separate processes for planning surprisingly ignorant of medical facts about prevention and treatment services. Treatment HIV or do not consider promotion of treatment programs use a highly clinical, physician-inten- linkages as their responsibility. Meanwhile, the The History of the AIDS Epidemic in Black America, 2011 91 enormous insights that prevention workers have Prophylactic Uses of gained over the last three decades in understand- ing how to change human behavior are seldom Antiretrovirals applied in treatment settings, even though treat- ment success depends in large measure on hu- n addition to the powerful indirect preven- man behavior (e.g., seeking early testing, seeing tion benefits of antiretroviral therapy, re- one’s doctor regularly, or taking one’s medicines cent years have witnessed major advances as prescribed). Iin the use of these compounds for prophy- The HPTN 052 results underscore the anach- laxis against infection. As in the therapeutic ronism of this arbitrary bifurcation between use of the drugs, antiretroviral prophylaxis undermines the viral replication process, pre- prevention and treatment. It is clear that effective venting infection from taking hold following treatment is also effective prevention, and that the body’s exposure to HIV. a reduction in the number of new infections is Although progress in the preventive uses of conversely essential to preserve the long-term antiretrovirals has accelerated in recent years, viability of treatment programs. These results the latest advances represent the continuation of suggest that the organization of the AIDS re- long-term trends. As early as 1990, CDC recom- sponse needs to be radically rethought, and that mended that health care workers who experience prevention and treatment planning should be a blood exposure immediately initiate a four- merged or closely linked, using desired outcomes week antiretroviral to reduce the risk of becom- (e.g., reducing the number of infections, reducing ing infected.15 As evidence for post-exposure the number of AIDS deaths) rather than funding prophylaxis accumulated, this recommendation streams as the starting point for strategic plan- was extended to non-occupational exposures, ning and accountability. such as sexual intercourse or needle sharing.16 For Black America, the HPTN 052 results In 1994, an NIH-supported study found that have potentially profound implications. To date, administration of antiretrovirals to pregnant most HIV treatment education and advocacy women and their newborns significantly reduced programs have been located in white commu- the risk of mother-to-child transmission.17 As a nities, yet data on late diagnosis, health care result of additional research as well as extensive access, treatment literacy and treatment adher- real-world experience, evidence regarding the ence suggest that Black people living with HIV optimal timing and drug regimens for prevention are at particular need for such initiatives. To of mother-to-child transmission has expanded.18 achieve the level of success required to capture Recent studies indicate that use of antiretrovirals the prevention benefits of antiretroviral therapy, significantly reduce the likelihood of mother-to- major new investments will be needed to increase child transmission as a result of breastfeeding.19 HIV treatment literacy in Black communi- In the U.S., the number of newborns infected ties. Social marketing campaigns are needed annually with HIV has fallen by 93 percent since to increase awareness of the benefits of HIV the early 1990s as prevention methods have been testing and treatment, as well as the importance routinely implemented in prenatal care settings.20 of treatment adherence. Peer support should be In the 30th year of AIDS, dramatic new provided to help Black people living with HIV progress was reported in the use of antiretrovi- adhere to treatment. Social support services need rals to prevent HIV infection. In 2010, the hus- to be readily available to address the factors that band-wife research team of Salim and Quarrai- make adherence difficult for many patients. And sha Abdool Karim presented findings from their a national network of Black treatment advocates study of a vaginal microbicide gel in South Africa is needed to educate their peers and help patients that contained the antiretroviral drug tenofovir. navigate their way through the treatment process. Applied topically to the vagina, the gel reduced With the HPTN 052 results, the AIDS the risk of HIV transmission in female study response enters the epidemic’s fourth decade participants by 39 percent, with considerably confronting the horizon of a brave new world. greater protection (54 percent) reported among The question now is whether stakeholders in the women who carefully adhered to the prescribed AIDS field will have the courage to make the regimen, which required users to apply the mi- changes needed to capture the promise of recent crobicide 12 hours before and 12 hours after sex.21 scientific advances. 92 AIDS: 30 Years Is Enuf!

If confirmed by trials that are presently ongoing, vaccinated.28 Recent laboratory discoveries of these results could help close a major gap in the antibodies that appear to broadly neutralize HIV prevention continuum by providing women with further suggest that development of a preven- their first discreet prevention option that they tive vaccine is likely to be feasible, injecting new themselves may initiate and control. excitement into the vaccine field. In late 2010, researchers reported that a In addition to new biomedical tools for HIV multi-country study had found that daily pre- prevention, there have been promising advances exposure prophylaxis with the antiretrovirals in efforts to address the social determinants emitricitibine and tenofovir reduced the risk of HIV risk and vulnerability. In study results of infection by 44 percent in men who have sex reported in 2010, girls who received regular cash with men, with a prevention benefit greater than payments to remain in school resulted in a 60 90 percent for study participants whose blood percent decline in new HIV infections compared tests indicated careful adherence to the daily to the control group.29 In a separate study, pro- protocol.22 In April 2011, a trial of the same pre- viding cash payments to young men and women exposure regimen involving nearly 2,000 women to avoid unsafe sex resulted in a 25 percent in sub-Saharan Africa was terminated due to lack decline in new diagnoses of sexually transmitted of evidence of efficacy.23 infections.30 Although these preliminary results Although exciting, the results from the 2010 need to be confirmed, the findings strongly trials nevertheless leave a number of questions un- suggest that targeted efforts to address young answered. In addition to the need to confirm these people’s economic vulnerabilities and to forge in- initial results, uncertainties remain regarding novative incentives that encourage safer behavior costs associated with the interventions, especially may have a role to play in HIV prevention. for PrEP, as the study suggests that careful adher- ence to the daily regimen by HIV-negative people * * * is required to maximize the protective effect. After years of disappointment on the HIV prevention front, recent advances have the Other Potential Prevention potential to transform the fight against AIDS. Indeed, these gains are so profound that it is now Approaches possible to imagine an “end game” against the epidemic. Whether this opportunity is seized will eyond antiretroviral drugs, several depend in large measure on our ability to muster other new prevention strategies have sufficient wisdom, commitment and fortitude emerged in recent years. For example, to translate these scientific advances into the three clinical trials in sub-Saharan Af- B kinds of policies and programs needed to move rica found that adult male circumcision reduces the risk of female-to-male sexual transmission toward the elimination phase of the epidemic. In by 60 percent.24,25,26 Although these findings contrast to earlier stages in the epidemic, when have prompted numerous African countries to a shortage of needed tools stymied progress, the begin efforts to introduce medical circumci- question now is whether governments, affected sion services, the applicability of the results to communities and other stakeholders have the the U.S. context remain unclear. In addition to will to do what is necessary to end the epidemic. the fact that circumcision prevalence is higher among Black American men and other groups of males in the U.S., studies to date have failed Notes to generate convincing evidence for a protective benefit to gay and bisexual men in this coun- 1. Global HIV Prevention Working Group (2007). 27 Bringing HIV Prevention to Scale: An Urgent Global try. Necessity. www.globalhivprevention.org/reports.html. Meanwhile, the search for a preventive vac- 2. Wolitski RJ et al. (2001). Are We Headed for a cine continues. In 2009, results from the trial Resurgence of the HIV Epidemic Among Men Who Have Sex of a combination preventive vaccine in Thai- With Men? Am J Pub Health 91:883-888. land found that the product conferred modest 3. aids2031 Consortium (2011). AIDS: Taking a Long- Term View. Upper Saddle River NJ: FT Science Press. reduction (about 26 percent) in the risk of HIV 4. Henry J. Kaiser Family Foundation (2011). U.S. transmission among study participants who were Federal Funding for HIV/AIDS: The President’s FY2012 The History of the AIDS Epidemic in Black America, 2011 93

Funding Request. www.kff.org/hivaids/upload/7029-07.pdf. Chemoprophylaxis for HIV Prevention in Men Who Have 5. National Institute of Allergy and Infectious Disease Sex with Men. New Eng J Med 363:2587-2599. (2011). Treating HIV-infected People with Antiretrovirals 23. Family Health International (2011). FHI to Initiate Protects Partners from Infection. May 12. www.niaid.nih. Orderly Closure to FEM-PrEP. www.fhi.org/en/Research/ gov/news/newsreleases/2011/Pages/HPTN052.aspx. Projects/FEM-PrEP.htm. 6. Quinn TC et al. (2000). Viral Load and Heterosexual 24. Auvert B et al. (2005). Randomized, controlled Transmission of Human Immunodeficiency Virus Type 1. intervention trial of male circumcision for reduction of HIV New Eng J Med 342:921-929. infection risk: the ANRS 1265 trial. PLoS Med 2:e298. 7. Montaner J et al. (2010). Association of Expanded 25. Bailey RC et al. (2007). Male circumcision for HIV HAART Coverage with a Decrease in New HIV Diagnoses, prevention in young men in Kisumu, Kenya: a randomized Particularly among Injection Drug Users in British controlled trial. Lancet 369:643-656. Columbia, Canada. XVII Conference on Retroviruses and 26. Gray RH et al. (2007). Male circumcision for HIV Opportunistic Infections. San Francisco (USA). prevention in men in Rakai, Uganda: a randomized trial. 8. Das M et al. (2010). Decreases in Community Lancet 369:657-666. Viral Load Are Accompanied by Reductions in New HIV 27. Millett GA et al. (2008). Circumcision Status and Infections in San Francisco. PLoS ONE 5:e11068. Risk of HIV and Sexually Transmitted Infections Among 9. Dieffenbach CW (2010). Treatment as Prevention. Men Who Have Sex With Men. JAMA 300:1674-1684. PEPFAR Expert Consultation: Unresolved Issues in HIV 28. Rerks-Ngarm S et al. (2009). Vaccination with Prevention Programming in Generalized Epidemics. ALVAC and AIDSVAX to Prevent HIV-1 Infection in November 8. Washington: U.S. Department of State. Thailand. New Eng J Med 361:2209-2220. 10. See Hall HI et al. (2008). Estimation of HIV 29. Ozler B (2010). A New Approach to HIV Prevention: Incidence in the United States. JAMA 300:520-529. Cash Transfers and Risk Reduction among Adolescent Girls. 11. Panel on Antiretroviral Guidelines for Adults and XVIII International AIDS Conference, Vienna, Session Adolescents (2011). Guidelines for the use of antiretroviral SUSA22—Conditional Economic Incentives for HIV agents in HIV-1 infected adults and adolescents. U.S. Prevention in the Developing World. Department of Health and Human Services. www.aidsinfo. 30. De Walque D (2010). Evaluating Conditional Cash nih.gov/contentfiles/AdultandAdolescentGL.pdf. Transfers to prevent HIV and other sexually transmitted 12. Granich RM et al. (2009). Universal voluntary HIV infections (STIs) in Tanzania. XVIII International AIDS testing with immediate antiretroviral therapy as a strategy Conference, Vienna, Session SUSA22—Conditional for elimination of HIV transmission: a mathematical model. Economic Incentives for HIV Prevention in the Developing Lancet 373:48-57. World. 13. CDC (2010). Prevalence and Awareness of HIV Infection Among Men Who Have Sex With Men—21 Cities, United States, 2008. Morbidity and Mortality Weekly Report 59:1201-1207. 14. Blow CM (2011). “HIV SOS.” New York Times. May 14. www.nytimes.com/2011/05/14/opinion/14blow.html?_ r=1&partner=rssnyt&emc=rss. 15. CDC (1990). Public Health Service statement on management of occupational exposure to human immunodeficiency virus, including considerations regarding zidovudine postexposure use. Morbidity and Mortality Weekly Report 39:RR-1. 16. CDC (2005). Antiretroviral Postexposure Prophylaxis After Sexual, Injection-Drug Use, or Other Nonoccupational Exposure to HIV in the United States. Morbidity and Mortality Weekly Report 54:RR-2. 17. Connor EM et al. (1994). Reduction of Maternal- Infant Transmission of Human Immunodeficiency Virus Type 1 with Zidovudine Treatment. New Eng J Med 331:1173-1180. 18. WHO (2010). Antiretroviral drugs for treatment HIV infection in pregnant women and preventing HIV infection in infants. 19. WHO (2011). Kesho Bora Study: Preventing mother- to-child transmission of HIV during breastfeeding. www. who.int/reproductivehealth/publications/rtis/KeshoBora_ study.pdf. 20. CDC (2007). Pregnancy and Childbirth – Fact Sheet. http://www.cdc.gov/hiv/topics/perinatal/index.htm. 21. Karim QA et al. (2010). Effectiveness and Safety of Tenofovir Gel, an Antiretroviral Microbicide, for the Prevention of HIV infection in Women. Science 329:1168- 1174. 22. Grant RM et al. (2010). Preexposure Presidential Report Cards Which Presidents Make the Grade

Over the past 30 years, five U.S. commanders-in-chief have led the nation’s response to the HIV/AIDS epidemic. Who gets good marks? From 1981 to the present, we assess each president’s leadership. The History of the AIDS Epidemic in Black America, 2011 95

Ronald Reagan (1981-1989)

he AIDS epidemic arose during his first year in office, yet no U.S. president demonstrated less leadership about the disease or a greater lack of Tconcern for its sufferers than Ronald Reagan. Strongly influenced by the so-called Moral Majority, which believed that AIDS was God’s punishment to gay men and IV drug users, the Reagan administration failed to mount a meaningful public health response at a time when aggressive action might have curbed what would become the greatest public health catastrophe of the 20th century. Ignoring the overwhelming opinion of medical and public health experts, Reagan pursued mandatory HIV testing in federal programs as the centerpiece of his AIDS policy. While the Reagan administration allocated some funding for research, it wasn’t until 1986 that Reagan’s Surgeon General C. Everett Biggest Hits: Allowed Surgeon General Koop—aided by a small team that included Dr. C. Everett Koop to send a letter to all Anthony Fauci, the head of AIDS research at Americans about AIDS. the National Institutes of Health—effectively executed an end run around the rest of the Biggest Misses: Ignored the disease for administration. Dr. Koop published a Surgeon years. Failed to rally public awareness and General’s report that not only explained AIDS, support. Imposed mandatory HIV testing its risk factors and how to prevent the disease in numerous federal programs. to the American public, but that also included information about condoms and sex education Grade: F that differed from the administration’s more conservative approach. (In 1988 Dr. Koop also sent a mailing about AIDS to every household in the U.S.) Ironically President Reagan, nicknamed The Great Communicator, didn’t give his first speech on AIDS until 1987. By then over 36,000 Americans had been diagnosed with the disease and 20,000 people had died, including his dear friend Rock Hudson. Shortly after speaking out he established the President’s Commission on the HIV Epidemic, whose findings activists say, he largely ignored. 96 AIDS: 30 Years Is Enuf!

George Herbert Walker Bush (1989-1993)

e was Vice President when the Reagan Administration failed to launch an effective approach to the burgeoning epidemic. And while he neverH implemented a comprehensive strategic response of his own, President Bush did take two very important steps that provided much- needed services to people living with HIV/ AIDS (PLWHA). First, President Bush signed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, providing $882 million in federal grants to the hardest-hit cities and all 50 states to care for people living with HIV/AIDS (PLWHA) and their families. Second, President Bush signed the Americans with Disabilities Act, prohibiting discrimination against people with disabilities, including PLWHA.

Biggest Hits: Signed Ryan White CARE Act and Americans with Disabilities, and met with the National Commission on AIDS.

Biggest Misses: Refused to support full funding for Ryan White. Largely ignored the recommendations of the National Commission on AIDS. Grade: C The History of the AIDS Epidemic in Black America, 2011 97

William J. Clinton (1993-2001)

resident Clinton failed in his 1994 attempt to achieve national health coverage through a universal health care plan. But he succeeded Pin bolstering the country’s response to the AIDS epidemic, elevating AIDS to the level of a White House office by establishing the Office of National AIDS Policy and creating the President’s Advisory Council on HIV/AIDS (PACHA). Funding for AIDS programs increased on his watch, including to the Minority AIDS Initiative directed towards communities of color. His administration also initiated outreach to educate Black leaders about AIDS’ disproportionate impact on their constituents. The Clinton administration launched the national effort to discover an AIDS vaccine and reorganized the AIDS research program at NIH. As well, that reorganization improved coordination and strategic focus.In 1995 Biggest Hits: Supported robust funding President Clinton signed the Family Medical increases for AIDS treatment and Ryan Leave Act, allowing employees to take unpaid White services. Rallied public support for leave for a pregnancy or serious medical the fight against AIDS. Supported creation condition. And after killing the first version of of the Minority AIDS Initiative as part the bill, he eventually signed the Children’s of the Ryan White programs. Approved Health Insurance Program, providing health notable funding increases for global AIDS coverage to low-income children and pregnant at the end of his second term. women. The global impact of what was rapidly Biggest Misses: Failed to approve federal becoming an HIV/AIDS pandemic began to funding for needle exchange. Failed in his be felt during the middle of his term. By then effort to achieve comprehensive health the president’s effectiveness was hampered care reform. and he failed to fund needle exchange programs to prevent new infections because Grade: B he believed “politically the country wasn’t ready.” Since leaving office President Clinton has become one of the most effective HIV/AIDS ambassadors in the world. Through the William J. Clinton Foundation, he has played an integral role in convincing heads of state and industry leaders to focus on HIV/AIDS and negotiating price reductions in antiretroviral medications for millions of PLWHA worldwide. 98 AIDS: 30 Years Is Enuf!

George W. Bush (2001-2009)

hile his father strengthened the domestic response after years of inaction under President Reagan, the second President WBush largely turned his back on the domestic epidemic. Not only did he barely convene PACHA, the Bush administration’s investment in the domestic epidemic was lackluster at best, barely keeping pace with inflation. For every dollar the Bush administration spent on AIDS domestically, it spent only 4 cents on preven- tion. He also failed to implement meaningful reform during the prescription drug plan, which many say turned into a giveaway to pharmaceu- tical companies. But while Bush II failed to carry out a vision at home, globally he showed significant leader- ship in the form of his landmark 2003 legislation the President’s Emergency Plan for AIDS Relief (PEPFAR), a $15 billion, 5-year strategy to fight Biggest Hits: Created the largest the epidemic in 15 severely affected African na- global health program in history to tions. Renewed by the Obama administration, tackle a single disease, delivering to date PEPFAR claims that nearly 33 million life-saving antiretroviral therapy to people have been counseled and tested, 3 millions of people in poor countries and million people have started on treatment and transforming the global AIDS response. in 2010 alone 114,000 mother-to-child transmis- sions have been prevented, worldwide. Al- Biggest Misses: Paid very little attention though PEPFAR has literally changed our world, to domestic epidemic, watching while some of the Bush administration’s policies lim- waiting lists for AIDS Drug Assistance ited its effectiveness. In particular, the admin- Programs emerged and particularly istration prioritized abstinence-only funding shortchanging prevention programs. over comprehensive prevention measures, an Limited the prevention impact of U.S. approach that critics contend allowed Uganda’s global AIDS programs by favoring epidemic to rebound after years of success. In unproven abstinence-only programs and addition, the administration required recipients by imposing restrictions on organizations of PEPFAR support to pledge their opposition serving sex workers. to sex work, undercutting the effectiveness of efforts to engage sex workers in prevention Grade: C- programs. Meanwhile the virus devastated Black communities in the U.S. By 2009 Black America was suffering the equivalent of the world’s 16th largest AIDS epidemic, which would have quali- fied it for PEPFAR had that program existed at home. President Bush also vetoed two attempts to expand funding for the SCHIP program. The History of the AIDS Epidemic in Black America, 2011 99

Barack H. Obama (2009-present)

efore he entered office our nation’s first Black president had already spoken at length about the need for personal and professional leadership Bon AIDS. He’d also walked the talk by getting tested publically. Once in office he moved fairly quickly on two fronts: repealing the ban against PLWHA traveling to the United States and ending the federal prohibition against needle exchange in Washington, D.C. He also maneuvered through political landmines, orchestrating the passage of the Affordable Care Act (ACA), which majority whip James Clyburn, the most powerful Black member of the U.S. House of Representatives, called “the Civil Rights Act of the 21st century.” Although now being vigorously fought by its detractors, the ACA will ensure health insurance coverage for 32 million uninsured Americans, close the drug assistance donut hole, prevent Biggest Hits: Launched National HIV/ insurance companies from denying coverage AIDS Strategy. Achieved comprehensive to those with “pre-existing conditions,” and health care reform. Lifted longstanding prohibits lifetime caps on the amount of health HIV immigration ban and previous bar care an insurance plan will provide. on federal funding for needle exchange. But the publication of our country’s first Revitalized PACHA and Office of National National HIV/AIDS Strategy in the 30-year AIDS Policy. history of the epidemic ranks as perhaps the most notable HIV/AIDS-related accomplishment Biggest Misses: Failed to ensure that by any U.S. president in the 30-year history of domestic AIDS funding keeps pace with the epidemic. With its goal of reducing new need. Supported only modest funding infections 25 percent by 2015, the NHAS sets increases for global AIDS spending. forth aggressive goals and accountability for all departments in the federal government. Grade: Incomplete Still, the NHAS must be carried out in the worst economic climate since the Great Depression—one that has blown holes in state ADAP budgets. (The administration did provide $25M in emergency funding.) In our opinion the president’s FY2012 budget came up a little short, with no increases to the Minority AIDS Initiative and too few dollars allocated to drive the nation toward its 2015 prevention goal. Still, we’re cautiously optimistic. 100 AIDS: 30 YearsJulian Is Enuf Bond! 30 YEARS IS ENUF! Recommendations to End the AIDS Epidemic in Black Communities

favorable medical outcomes in Black communities, including late HIV Build strong and testing, inadequate health care access, durable treatment interruptions in health services, and capacity in Black sub-optimal treatment adherence. communities. Recommendation 3: Establish a national network of HIV centers of It will be impossible to seize the opportuni- excellence in Black communities. ties of treatment-as-prevention or other promis- In recognition of the urgent need ing ARV-based prevention methods without for holistic, client-centered services dramatically increasing HIV treatment literacy to address the HIV-related needs of in Black America. Black people, national leaders should Recommendation 1: Make major ensure that every Black person living investments in HIV treatment science with HIV has meaningful access education in Black communities. to a comprehensive HIV center of Educational efforts should include excellence. These centers should offer focused training and capacity-building or provide linkages to a continuum of support, use of peer-based educational HIV prevention and treatment services, models, and extensive marketing of including wraparound services to the benefits of HIV testing, prevention, help Black patients overcome access treatment, and adherence. barriers and impediments to treatment B adherence. Recommendation 2: Create a national network of AIDS treatment advocates in Black America. Funding by federal, state and local governments and by Make the appropriate private industry and philanthropies should support the establishment of a investment to end the strong community-based platform for AIDS epidemic now. treatment advocacy. Black treatment advocates should prioritize initiatives Ending the AIDS epidemic is not just to address specific impediments to about money. But proper resources matter. As 102 AIDS: 30 Years Is Enuf! concern about federal spending has mounted, to drive effective action on the domestic policy-makers are increasingly arguing for fiscal epidemic, the President and Congress austerity. It’s reasonable for Americans to expect must work together to ensure that the their government to live within its means, but strategy is effectively implemented. it’s equally imperative that we avoid sacrificing Regular reports are needed to monitor the nation’s public health in the name of budget- progress toward the targets set forth in cutting. AIDS shouldn’t be yet another the strategy. political football. Recommendation 5: Fully implement Recommendation 1: Maintain and the Patient Protection and Affordable increase funding for AIDS. Historic Care Act. Moving toward universal new opportunities to end AIDS will slip health coverage is critical to capturing through our fingers if we nickel-and- the prevention potential of treatment. dime the national response. Spending Studies consistently correlate lack the money needed now to transition of health coverage with sub-optimal toward the elimination phase of HIV utilization of testing and treatment will pay health and economic dividends services. As the Congressional Budget for generations. Office has found, health care reform will help reduce the federal deficit over Recommendation 2: Take immediate the long run. steps to eliminate all AIDS Drug Assistance Program (ADAP) waiting Recommendation 6: Take immediate lists. It will be impossible to capture the steps to introduce new prevention tools. prevention potential of antiretroviral The Food and Drug Administration treatment if thousands of people living should expedite the follow-up studies with HIV remain on ADAP waiting required to ensure licensure of the lists. ADAP not only preserves the lives recently validated vaginal microbicide of the more than 140,000 people living for use as an HIV prevention method with HIV who depend on the program that women can control and initiate for essential medicines, but also on their own. Demonstration projects significantly reduces the risk of should be put in place to inform onward transmission. the introduction of pre-exposure prophylaxis (PrEP) for gay and bisexual Recommendation 3: Ensure that men, and additional studies should be AIDS funding follows the epidemic pursued to ascertain the effectiveness of by targeting spending to those who PrEP for heterosexual populations. need it. Mismatches between AIDS spending patterns and available Recommendation 7: Invest in evidence of the disease burden in operational research to inform different communities must be implementation of innovative new eliminated. Timely, reliable monitoring programs to capture the potential of mechanisms must be put in place to treatment-as-prevention. Community track AIDS spending by demographic organizations, state and local health group and geographic setting, and both departments, and other stakeholders incentives and penalties must be put in urgently need information on optimal place to ensure that policy-makers act methods for promoting HIV testing, rapidly to correct the mis-targeting of linking individuals who test HIV- AIDS spending. positive with care, ensuring the continuity of HIV care and treatment, Recommendation 4: Fully implement and promoting treatment adherence. and adequately fund the National HIV/ AIDS Strategy. With a comprehensive, Recommendation 8: Continue target-driven framework now in place and strengthen investments in HIV The History of the AIDS Epidemic in Black America, 2011 103

prevention and treatment research. outcomes (e.g., reduce HIV infections, Research is urgently needed to identify reduce AIDS deaths, etc.). Where less costly methods to achieve favorable needed, federal regulatory obstacles to treatment outcomes for people living merged planning for prevention and with HIV. It is also critically important treatment should be removed. Within that the National Institutes of Health state and local health departments, continue supporting research toward a prevention and treatment programs cure as well as toward development of a should be overseen and administered by safe and preventive AIDS vaccine. the same office.

Recommendation 3: Innovative operational funding and capacity- building support should encourage Create a single, cross-fertilization of expertise and best comprehensive service practices among local service providers. Prevention service providers must continuum for HIV. become fully versed in HIV treatment Recent research findings from HPTN 052 issues. Conversely, especially in light of make clear that prevention and treatment are the importance of treatment adherence, part of a single continuum. Now, more than regular clinic attendance, and patient ever, the historic dichotomy between prevention self-care, clinical settings must be and treatment is an anachronism that needs to able to benefit from the expertise of be jettisoned. prevention providers in changing individual behavior and forging new Recommendation 1: Merge the social norms. federal response into a truly unified approach, integrating prevention, Recommendation 4: Health care treatment, research, and evaluation providers should be adequately with streamlined reporting and reimbursed for a comprehensive array a single locus for accountability. of prevention interventions, including Innovative bureaucratic solutions HIV testing and counseling as well should be considered, including the as diverse uses of antiretrovirals. One merger of all elements of the federal reason why medical providers place such response into a single federal agency. little emphasis on prevention is that At the very least, all components of the third-party payers are stingy in paying federal government must be directly for such interventions. If the promise accountable for a single set of outcome of recent research breakthroughs is and performance indicators. To capture to be realized, this counterproductive approach must be rejected. As part the potential of new opportunities, the of the implementation of health care historic protection of turf within the reform, the federal government should federal AIDS response must give way mandate adequate coverage for essential to an optimally strategic, coordinated prevention strategies, including testing and coherent effort that transcends and counseling, pre- and post-exposure bureaucratic hurdles. antiretroviral prophylaxis, wraparound Recommendation 2: Planning for services to promote health care treatment and prevention services must continuity and treatment adherence, be merged at the local level. All state and vaginal microbicides. and local health departments should Recommendation 5: Monitor HIV have a common planning process for results. Consistent with the National all elements of the AIDS response, with HIV/AIDS Strategy, the federal planning outcomes determined not by government must carefully monitor arbitrary funding streams but by desired 104 AIDS: 30 Years Is Enuf!

and report annually on HIV-related all testing providers have strong outcomes (e.g., incident infections, and demonstrated links with HIV AIDS deaths, treatment adherence, treatment settings. Although it’s often knowledge of HIV status, community said that knowledge is power, too viral load, etc.). Where sub-optimal often knowledge of HIV status has not outcomes are reported, policy changes proven to be powerful enough to ensure must be implemented to address such use of needed health services. While problems. aggressively promoting HIV testing, it will be equally important to ensure that all people who test HIV-positive are immediately linked to follow-up care. Pursue innovative Testing providers should be required to strategies to market monitor service linkage for people who test HIV-positive, and future funding and promote HIV should be conditioned on demonstrated testing and treatment. success in linking positive testers to follow-up care. Passive approaches to service delivery—in which services are created, and low-income Recommendation 4: The offer of a vol- people, including those with multiple health untary, confidential HIV test should be challenges, are left to their own devices to access made routine in a range of health, edu- these services—must be replaced by a more ag- cational and service settings. The vision gressive and proactive effort. Treatment-as-pre- of routinizing HIV testing in health care vention leaves little room for error. If the promise settings remains unrealized in many of this new breakthrough is to be realized, all communities, underscoring the need for people living with HIV will need to be diagnosed urgent action to ensure that all individu- early, immediately linked to care, and supported als who use health services are offered in adhering to treatment regimens. the chance to be tested for HIV. Students entering high school or college should Recommendation 1: Undertake mass be offered HIV testing and encouraged marketing campaigns to promote HIV to learn their HIV status. Welfare offices testing and treatment. Campaigns and social service settings should simi- should be particularly targeted toward larly offer meaningful, low-threshold Black America. Too many Black people opportunities for clients to be tested. remain hesitant to learn their HIV Consistent with existing confidentiality status, in part because they are unaware and anti-discrimination protections, of the enormous advances that have testing should in all cases be voluntary been made in treating HIV and that it and confidential, with individuals being is possible for a person living with HIV tested retaining sole control over the to have a normal lifespan. Extensive disclosure of their HIV test results. marketing should be used to position HIV testing as a fundamental social norm in Black communities and to increase awareness of the availability of Ensure strong HIV treatment services. leadership on AIDS— Recommendation 2: Make HIV testing nationally, and a Medicare Performance Indicator. Providers should receive enhanced especially within Black payments for successful innovation in America. promoting and delivering HIV testing services. AIDS is no longer a new problem. But it is not going away, especially in Black America. Recommendation 3: Mandate that With a comprehensive national strategy now in The History of the AIDS Epidemic in Black America, 2011 105 place to guide and strengthen the AIDS response, strong leadership will be critical to future prog- ress against the epidemic.

Recommendation 1: President Obama should deliver a major address specifically dedicated to the fight against AIDS. Building on recent research advances and on the future directions set forth in the National HIV/AIDS Strategy, the President should build American commitment to take the necessary steps to end the epidemic.

Recommendation 2: Every Black institution in the U.S. must develop and implement an AIDS strategy. No stakeholder in Black America is able to take a pass in the fight against AIDS. With new opportunities to move toward the “end game” on AIDS, this fight needs to be taken up by every institution in Black America—at local, state and national levels.

Recommendation 3: Cultivate future AIDS leaders. The 30 young people under age 30 who are profiled in this report demonstrate the passion and insights that young people bring to the AIDS fight. Far too often, though, they receive little support or mentoring on the path toward future leadership. This needs to change. Government and private funders need to prioritize leadership development initiatives for young people, and organizations and institutions within Black America need to take steps to support leadership and decision-making by young people. Rashidah Abdul-Khabeer106 AIDS: 30 Years Is Enuf! APPENDIX 1 Glossary of Terms

length of the acute stage can last anywhere from a A few days to several weeks. HIV multiplies rapidly and can be transmitted to others during this time. ABC Acute HIV infection is also known as primary HIV infection (PHI). The ABC approach to behavior change promotes ADAP—AIDS Drug Assistance Program(s) the adoption of the following three behaviors as central to HIV prevention efforts: AIDS Drug Assistance Programs are U.S. feder- A—Abstaining from sexual activity or delaying ally funded, state-administered programs. They the age of the first sexual experience provide HIV-related medications to people with HIV/AIDS with limited or no health insurance B—Being faithful or practicing mutual monoga- coverage. my with an uninfected partner The programs vary widely across the country as C—Correct and consistent condom use eligibility for ADAP is determined on a state-by- state basis, as are the drugs that are covered. Abstinence Affected Community Refraining from sexual activity. In the context of HIV/AIDS, this term also refers to delaying the Persons living with HIV/AIDS, and other related age of first sexual experience or sexual debut. individuals including their families and friends, whose lives are directly influenced by HIV infec- Accidental Exposure or Accidental Transmis- tion and its physical, social and emotional effects. sion AIDS This usually refers to HIV exposure or trans- mission that occurs in the health care setting. Acquired Immunodeficiency Syndrome (AIDS) is Transmission can occur from patient to provider the stage at which an individual’s immune system or vice-versa. is weakened by HIV to the point where they develop any number of diseases or cancers. People Acute HIV Infection who haven’t had one of these diseases or cancers, but whose immune system is shown by a laborato- The first stage of HIV infection, this is the period ry test to be severely damaged, are also considered immediately following infection with HIV. The to have progressed to an AIDS diagnosis. 108 AIDS: 30 Years Is Enuf!

AIDS-Defining Illness B These include a variety of conditions that occur at late stages of HIV disease and that signal pro- Burden of Disease gression to AIDS. According to UNAIDS, many individuals first become aware of their infection A comprehensive demographic and epidemiologi- at this stage. cal framework used to assess the comparative im- portance of diseases, injuries, and risk factors in AIDS Dementia Complex (ADC) causing premature death, loss of health, and dis- ability. The World Health Organization (WHO) AIDS Dementia Complex, also known as HIV and other partners carry out the Global Burden of Dementia, is a condition caused by HIV that af- Disease (GBD) Project to develop global estimates fects the brain and causes a person to lose their of burden. mental ability. Symptoms include loss of coordi- nation and interest in one’s surroundings, mood swings, and mental dysfunction. Memory loss and limited mobility can also develop. ADC usu- C ally occurs after a person has developed serious opportunistic infections, but can also occur at an earlier stage. ADC can be prevented and treated Care, Treatment and Support with antiretroviral therapy. Care, treatment and support encompass the range Antenatal of interventions necessary to take care of people living with HIV/AIDS, including antiretroviral Occurring before birth (as in HIV exposure or therapy, treatment and prevention of opportunis- transmission from mother to infant during preg- tic infections, nutritional support, psychological nancy). and community and home support. Care, treat- ment and support are increasingly seen as being Antibodies inextricably linked to each other.

Molecules in the body that identify and destroy CD4 (T4) Cell Count foreign (unfamiliar) substances such as bacteria and viruses. Standard HIV tests identify whether These cells control the body’s immune response or not antibodies to HIV (HIV antibodies) are against infections and are the primary targets for present in the blood. HIV.

A positive HIV test signals that antibodies are HIV multiplies within these cells and eventually present. destroys them. As a result, the immune system becomes progressively weaker. CD4 cell count is Antiretroviral Therapy (ART) used as one measure of HIV disease progression. The lower a person’s CD4 cell count, the more ART refers to any of a range of treatments that advanced the HIV disease and deterioration of include antiretroviral (ARV) medications. The the immune system. drugs that are used in the treatment of HIV, a ret- rovirus, are designed to interfere with the virus’ ability to replicate itself and, therefore, slow the U.S. Centers for Disease Control and Preven- progression of the disease. tion (CDC)

Asymptomatic The United States Federal agency responsible for protecting individuals’ health and safety. The A person with HIV is asymptomatic if they do not CDC’s activities emphasize disease prevention, show signs and symptoms of the disease. This is control, health education and health promotion. also the second stage of HIV disease progression The CDC also conducts international prevention and can last for many years after infection. The activities for HIV, TB, malaria and other diseases. virus can be transmitted during this stage. Circumcision

The procedure, in which the foreskin of the penis is removed, has been shown in randomized con- The History of the AIDS Epidemic in Black America, 2011 109 trolled trials to reduce the risk of HIV transmis- sion from women to men. In 2007, the World D Health Organization and UNAIDS recommended that circumcision be considered “an important DDT intervention” in reducing the risk of heterosexu- ally acquired HIV infection in men. The health DDT (dichlorodiphenyltrichloroethane) was organizations view the procedure as one part of a the main insecticide used during the 1950s and comprehensive prevention program. 1960s in the World Health Organization’s (WHO) global campaign to eradicate the mosquitoes Clinical Trial that carry malaria. DDT has a history of being a highly controversial insecticide. It has been A scientific study designed to evaluate the safety, banned from agricultural use in almost all coun- efficacy and medical effects of a treatment (e.g., tries. Currently, WHO recommends use of DDT antiretroviral therapy, vaccine). A treatment must for malaria control through indoor spraying. proceed through several phases of clinical trials Through WHO’s efforts, malaria was successfully before it is approved for use in humans. eradicated from North America and Europe.

Co-Infection Down Low

Refers to the condition of an organism or indi- A term that has been used to refer to men who vidual cell infected by two pathogens, or infec- have sex with men but do not necessarily identify tious agents, simultaneously, such as HIV and as gay or bisexual and may not disclose this infor- tuberculosis. mation to others. They may also be having sexual relations with women. Combination (Anti retroviral) Therapy Drug-Drug Interaction The use of two or more antiretroviral drugs in combination. The use of three or more antiret- A situation where a drug changes the way another roviral drugs is often referred to as HAART or drug works in the body, also known as a synergis- Highly Active Antiretroviral Therapy. tic effect. This can result in increased or decreased effectiveness of either drug. Drug-drug interac- Complementary and Alternative Therapies tions can also lead to unintended side effects.

Treatments that are outside the scope of Western Drug Resistance medicine. The effectiveness of these therapies in combating HIV infection has not been proven. The ability of HIV to reproduce despite the pres- ence of anti-HIV drugs. Drug resistance results Concurrent Sexual Partnerships from mutations that arise during HIV replication.

Having more than one sexual partner at a time. Dry Sex The practice raises the risk of contracting HIV and is increasingly recognized as a significant fac- Refers to the practice of women using various tor in the high prevalence rate of HIV in Africa. agents to “dry out” the vagina before sexual in- tercourse. This practice is often based on cultural Cross Resistance beliefs, but inadvertently can increase the risk of HIV transmission because condoms break more The phenomenon where HIV resistance to one easily from the friction and a dry vaginal wall can drug (see drug resistance) prompts resistance to lead to tears and lacerations during intercourse. other drugs in the same drug class. An example of this is nevirapine resistance resulting in resis- tance to efavirenz. E

Efficacy

The measurement of a drug’s or treatment’s ability to heal, regardless of dose. For example, the ef- ficacy of an antiretroviral drug is the most benefit 110 AIDS: 30 Years Is Enuf! that the drug can cause without considering how of choice used to treat a particular condition (as much of the drug is taken. opposed to second-line drugs). See also second- line drugs. Endemic Fixed Dose Combination (FDC) The constant presence of a disease or infectious agent within a given geographic area or popula- Fixed dose combination treatment refers to a tion group; can also refer to the usual prevalence combination of two or more drug products, such of a given disease within such area or group. as antiretrovirals, in a single pill. An example of FDC is the single-pill combination of stavudine, End-stage Disease lamivudine and nevirapine.

The four stages of HIV disease are acute infection, asymptomatic, chronic symptomatic and AIDS. Although AIDS is the end-stage of HIV disease, it G is possible to live for years after an AIDS diagno- sis given appropriate drug therapy. Gender Inequality Epidemic (types—low, concentrated, gener- alized, hyperendemic) A phrase typically used to describe the second- class status women hold in many societies af- fected by the AIDS epidemic. This is important The occurrence of more cases of disease than ex- to consider in the context of the AIDS epidemic pected in a given area or among a specific group because the inequality often leaves them unable of people over a particular period of time. to negotiate sexual situations, which increases their risk of contracting HIV. Gender inequality There are different ways to describe the distribu- is increasingly seen as a major driver of the AIDS tion of an HIV epidemic in an area: epidemic. m Low-level—HIV prevalence is low across the Generic general population and is still low among higher- risk sub-populations A drug that is identical, or bioequivalent, to a brand name drug in dosage, safety, strength, how m Concentrated—HIV prevalence does not ex- it is taken, quality, performance, and intended ceed 1 percent of the general population but does use. The generic name of a drug is the common exceed 5 percent of some sub-populations (e.g., name of a drug, which is not protected under any among sex workers, IDU, MSM) manufacturer’s copyright. It is the more com- monly used format when referring to a drug in m Generalized—HIV prevalence exceeds 1 per- medical literature. In addition, generic sometimes cent of the general population refers to less expensive, but chemically identical, medications manufactured by companies that did m Hyperendemic—HIV prevalence exceeds 15 not invent the drug. In some countries, generic percent of the general population drugs come on the market after a patent on the drug has expired. In other countries, generic drugs are manufactured and sold even before a F patent expires. GIPA (Greater Involvement of People Living Feminization with HIV/AIDS)

The word used to describe the increasing impact The phrase reflects the recognition that people the HIV/AIDS pandemic is having on women. In who are HIV-positive must be involved in every South Africa, for example, far more women than aspect of responding to the epidemic ranging men are HIV-positive. Globally, approximately from HIV prevention, testing and counseling to half of those living with HIV are women. participating in policy forums. The principle was adopted at the Paris AIDS summit in 1994, es- First-Line Drugs tablishing that GIPA is, in the words of UNAIDS, “critical to ethical and effective national responses Therapeutic agents that are the immediate drug to the epidemic.” The History of the AIDS Epidemic in Black America, 2011 111

Global Fund Rights underscore the links between the protec- tion of human rights—such as gender equality The Global Fund to Fight AIDS, Tuberculosis and and non-discrimination—and providing an effec- Malaria was created in 2001 at the urging of then tive response to the epidemic. UN Secretary General Kofi Annan. The Global Fund is a partnership among governments, the private sector and affected communities. It is an independent grant-making organization whose I purpose is to raise and provide funding to de- veloping countries fight AIDS, tuberculosis and IDU malaria. Acronym for Injecting Drug User(s), and refers to individuals who use needles/syringes to inject H drugs. This is a major risk for HIV infection in many parts of the world.

Highly Active Antiretroviral Treatment Immune System (HAART) The body’s system of defense against foreign or- A course of treatment that involves the use of ganisms such as bacteria, viruses or fungi. three or more antiretrovirals. Immunodeficiency HIV Test A state where the immune system cannot defend The standard HIV diagnostic test looks for the itself against infection. HIV progressively weak- presence of HIV antibodies in the blood or in oral ens the immune system and causes immunodefi- fluid. HIV antibodies are molecules produced by ciency. the body once it detects the presence of HIV. The production of HIV antibodies does not happen Immunosuppression immediately after exposure to the virus. The period after infection, but before production of A state where the immune system cannot func- antibodies, is called the window period. During tion normally because it has been weakened. This the window period, an HIV test may be negative. can arise from drugs and medical treatments It is possible to test negative despite the presence (chemotherapy) or diseases (HIV). An immune of HIV in the body. There are several different system that is immunosuppressed may also be kinds of HIV tests used to screen for the presence referred to as immunocompromised. of antibodies. Incidence Human Immunodeficiency Virus (HIV) The number of new cases of a disease in a popula- The virus that causes AIDS. HIV can be trans- tion over a specific period of time (e.g., annual mitted through infected blood, semen, vaginal number of new HIV cases in a country). secretions, breast milk and during pregnancy or delivery. There are two types of HIV: HIV-1 and Incubation Period HIV-2. Both are transmitted through the same methods/manners and result in progression to The period of time between HIV infection and AIDS. HIV-1 is responsible for the overwhelm- the onset of symptoms. ing majority of global infections, whereas HIV-2 is less widespread and primarily found in West Africa. M Human Rights-Based Approach (HRBA) to HIV Malaria The general recognition that human rights must Malaria is a disease caused by parasites that be promoted and protected in the context of deal- are transmitted to humans via mosquito bites. ing with the AIDS epidemic. The UN’s Inter- Symptoms of infection may include fever, chills, national Guidelines on HIV/AIDS and Human headache, muscle pain, fatigue, nausea and vom- 112 AIDS: 30 Years Is Enuf! iting. These symptoms usually appear between 9 Multidrug Resistant Tuberculosis (MDR-TB) and 14 days after a person is bitten by an infected mosquito. In severe cases, the disease can be life See MDR-TB. threatening. Mutation MDR TB A change in an organism’s genetic structure that Acronym for “multidrug resistant tuberculosis,” arises during the process of multiplication. HIV a strain of tuberculosis that is resistant to two multiplies quickly and changes form during the or more anti-TB drugs. MDR -TB usually arises process. These changes allow for the formation of when people take only enough medication to feel drug resistant strains of the virus. better, but not the full amount prescribed by a physician. The weaker bacteria are killed, but the stronger bacteria survive and reproduce. These stronger bacteria, when fully grown and causing O sickness again, cannot be killed with the same treatment and require larger doses of the drug Opportunistic Infection (OI) or an entirely new, stronger drug. MDR -TB is a large problem in developing countries, where Diseases that rarely occur in healthy people but continual supervision of treatment and access to cause infections in individuals whose immune health care are not always possible. systems are compromised, including by HIV Microbicides infection. These disease organisms are frequently present in the body but are generally kept under control by a healthy immune system. When a Microbicides are products designed to reduce the person infected with HIV develops an OI, they transmission of microbes. Research is under- are considered to have progressed to an AIDS way to determine whether microbicides can be diagnosis. developed to successfully reduce the transmission of sexually-transmitted diseases, including HIV. Orphans Microbicides would be applied topically, either in the vagina or anus and could be produced in A child who has lost a parent to HIV/AIDS. many forms, including films, creams, gels, sup- UNAIDS estimates that about 15 million children positories or as a ring or sponge that releases the under the age of 18 have lost one or both parents active ingredient over time. to HIV/AIDS. Use of the phrase “AIDS orphans” Mother-to-Child Transmission is discouraged as it stigmatizes these children and also suggests they are HIV-positive when that may not be the case. This refers to transmission of HIV from an HIV- positive mother to her child during pregnancy, labor and delivery or breast-feeding. Transmis- sion from mother to child is also referred to as P perinatal and vertical transmission.

MSM Pandemic

Acronym for “men who have sex with men.” For A worldwide epidemic; occurring over a wide assessing disease risk, use of the term “MSM” is geographic area and affecting an exceptionally often used instead of “gay”, “homosexual” or “bi- high proportion of the population. sexual” because it refers to a risk behavior, rather than an identity that may or may not be tied to a Pathogen behavior. In many countries and cultures, men who have sex with other men may not perceive An organism or virus that causes disease. themselves as gay or bisexual. PEPFAR MTCT The President’s Emergency Plan for AIDS Relief This stands for “mother-to-child transmission.” (PEPFAR) is a US$15 billion, five-year initiative, initially announced in 2003 by U.S. President The History of the AIDS Epidemic in Black America, 2011 113

George W. Bush to address HIV/AIDS, TB and blood safety and harm reduction programs for malaria in developing countries. intravenous drug users.

Perinatal Transmission Primary HIV Infection (PHI)

Transmission of HIV from an HIV-positive The first stage of HIV infection, this is the period mother to her child during pregnancy, labor and immediately following infection with HIV. The delivery or breast-feeding. Perinatal transmission length of this stage can last for several weeks. is also known as mother-to-child transmission or HIV multiplies very often and can be transmitted vertical transmission. to others during this time. PHI is also known as acute HIV infection. Placebo Prophylaxis A substance that resembles a real medication but has no medical effect. Prophylaxis refers to the prevention or protective treatment of disease. Primary prophylaxis refers PMTCT to the medical treatment that is given to prevent onset of an infection. Secondary prophylaxis PMTCT stands for “prevention of mother-to- refers to medications given to prevent recurrent child transmission.” UNAIDS outlines a three- symptoms in an existing infection. part strategy to prevent HIV transmission from an HIV-positive mother to her child. PLHIV / PWA / PLWA / PLWHA m Protect females of child-bearing age against Acronyms for “People living with HIV,” “People HIV infection. with HIV/AIDS,” and “People living with HIV/ AIDS,” PLHIV is the preferred description, ac- m Avoid unwanted pregnancies among HIV- cording to UNAIDS, because it “reflects the fact positive women. that an infected person may continue to live well and productively for many years.” m Prevent transmission during pregnancy, de- livery and breast-feeding by providing voluntary counseling and testing, antiretroviral therapy, safe delivery practices and breast milk substitutes R when appropriate. Risky Behavior PMTCT Plus This refers to any behavior or action that increases PMTCT is “prevention of mother-to-child trans- an individual’s probability of acquiring or trans- mission” of HIV which is described above. The mitting HIV. Some examples of risky behaviors “plus” refers to providing anti-retroviral treat- are having unprotected sex, having unprotected ment to the mother even after the recommended sex with multiple partners and injecting drugs course of therapy for prevention of transmission with contaminated equipment. Alcohol use has to the child has ended. also been linked to risky behavior because of its Prevalence effect on an individual’s ability to make decisions and negotiate safer sex. Prevalence is a measure of the proportion of the population that has a disease at a specific period in time (e.g., number of people living with HIV). S Prevention (primary, secondary) Scale Up In the context of HIV, prevention activities are designed to reduce the risk of becoming infected Refers to the concept of achieving a sufficient level with HIV (primary prevention) and the risk of of coverage, uptake, intensity, and duration of an transmitting the disease to others (secondary HIV intervention to enable the intended effect. prevention). Prevention services include volun- tary counseling and testing, condom distribution, disease surveillance, outreach and education, and 114 AIDS: 30 Years Is Enuf!

Second-Line Drugs U Therapeutic agents that are not the first drug of choice (called first-line) used to treat a particular UNAIDS condition, but are generally used to treat those who have developed resistance to first-line treat- Acronym that refers to the Joint United Nations ments. See also first-line drugs. Programme on HIV/AIDS. It is a part of the UN and was established to coordinate its response to Sexually Transmitted Disease/Infection HIV/AIDS. Currently, UNAIDS comprises 10 UN (STD/STI) organizations and a Secretariat.

Any disease or infection that is spread through Universal Access sexual contact. The ability of all people to have equal opportu- Social Marketing nity and access to prevention, care, treatment, and support interventions from which they can An approach or technique that refers to the ad- benefit, regardless of their social class, ethnicity, aptation of commercial marketing techniques to background or physical disabilities. One example achieve social goals and encourage the adoption in the field of global health is universal access to of healthier behavior. Social marketing has been HIV treatment, a belief that all individuals living used to promote a range of HIV-related preven- with HIV/AIDS should have access to HIV treat- tion techniques including condom use. ment.

Stigma and Discrimination Universal Precautions

Stigma and discrimination toward HIV-positive Infection control measures used in health care people, and those perceived to be HIV-positive, settings aimed at preventing the transmission of are recognized as obstacles to achieving full HIV (and other blood-borne pathogens). These access to prevention, treatment and support ser- measures include the use of gloves and other vices. The stigma and discrimination that those protective gear, and the safe disposal of needles to at risk, and those living with HIV, may face from prevent exposure to blood and other body fluids. governments, communities and families make it less likely the at-risk will seek out care and information. V

T Vaccine

A substance that contains a deactivated infec- Tuberculosis (TB) tious organism designed to stimulate the immune system to protect against subsequent infection Tuberculosis is a bacterial infection caused by from the active organism. A preventive vac- Mycobacterium tuberculosis. The disease usually cine preempts infection from that organism. A affects the lungs but can spread to other parts therapeutic vaccine improves the ability of the of the body in serious cases. An individual can immune system of a person already infected with become infected with TB when another person the organism to defend itself. who has active TB coughs, sneezes, or spits. Not all people who become infected with TB develop VCT symptoms. Those who do not become ill are referred to as having latent TB and cannot spread “Voluntary Counseling and Testing” programs the disease to others. are a critical component of both HIV prevention and treatment activities. VCT is an internation- ally accepted intervention designed to enable people to learn their HIV status and receive coun- seling about risk reduction and referral to care if they are HIV-positive. Voluntary HIV testing approaches have relied on both client-initiated or opt-in testing (where the client asks to be tested) The History of the AIDS Epidemic in Black America, 2011 115 and provider-initiated or opt-out testing (where a provider offers testing to a client). Recently, there has been a move to provider-initiated testing to encourage more people to get tested and to make testing a more routine procedure in the health care environment.

Vertical Transmission

Transmission of HIV from an HIV-positive mother to her child during pregnancy, birth or breast-feeding. Vertical transmission is also referred to as mother-to-child or perinatal trans- mission.

Viral Load

The amount or concentration of HIV in the blood. There is a correlation between the amount of virus in the blood and the severity of disease— the higher the viral load, the more progressive the HIV disease. A viral load test is an important tool for doctors in monitoring illness and determining treatment decisions.

Vulnerable Populations

Populations that are at increased risk of exposure to HIV due to socioeconomic, cultural or behav- ioral factors. Vulnerable populations include ra- cial and ethnic minorities, refugees, poor people, men who have sex with men, injecting drug users, sex workers, and women where gender inequality is pronounced.

W

World Bank

The World Bank is a development bank that provides loans, policy advice, technical assis- tance and knowledge sharing services to low- and middle-income countries to reduce poverty. The World Bank is a co-sponsor of UNAIDS and a significant donor to international HIV/AIDS ef- forts.

World Health Organization (WHO)

The WHO is the United Nations agency for health. It is governed by 192 member states and aims to help all individuals achieve the high- est possible level of health. It is internationally recognized as one of the leading organizations dedicated to global health, including the preven- tion and treatment of HIV. Marlon Riggs and Essex Hemphill APPENDIX 2 Glossary of Acronyms

ABC Abstinence, Be faithful, Condom use ACA Affordable Care Act ADAP AIDS Drug Assistance Program, HRSA ADC AIDS Dementia Complex AETC AIDS Education and Training Center(s), HRSA AHRQ Agency for Healthcare Research and Quality AI/AN American Indian/Alaska Native AIDS Acquired Immune Deficiency Syndrome A/PI Asian/Pacific Islander ART, ARV Antiretroviral Therapy, Antiretroviral(s) ASL Assistant Secretary for Legislation, HHS ASPE Assistant Secretary for Planning and Evaluation, HHS ATTC Addiction Technology Transfer Center(s), SAMHSA AZT Zidovudine BCRS Bureau of Clinician Recruitment and Service BOP Bureau of Prisons, DOJ BPHC Bureau of Primary Health Care BHPr Bureau of Health Professionals CBO Community-Based Organization CDC Centers for Disease Control and Prevention CFAR Center(s) for AIDS Research, NIH CHAT Curbing HIV/AIDS Transmission Among High Risk Youth and Adolescents CHC Community Health Center(s) CMS Centers for Medicare and Medicaid Services CNN Condoms, Needles, Negotiation CTG Community Transformation Grants CTN Clinical Trials Network, NIH CVL Community Viral Load CY Calendar Year DASH-ID Deputy Assistant Secretary for Health, Infectious Disease DEBI Diffusion of Effective Behavioral Interventions, CDC DOE Department of Education DOJ Department of Justice DOL Department of Labor DOTS Directly Observed Treatment or Therapy Short-Course 118 AIDS: 30 Years Is Enuf!

ECHPP Enhanced Comprehensive HIV Prevention Planning, CDC EHR Electronic Health Records ELISA Enzyme-Linked Immunosorbent Assay EMEA European Medicines Agency (EU) FDA Food and Drug Administration FDC Fixed Dose Combination FI Fusion Inhibitor FOA Funding Opportunity Announcement FPC Family Planning Clinics FQHC Federally Qualified Health Center FTCC Federal Training Centers Collaborative FY Fiscal Year (October 1—September 30) GIPA Greater Involvement of People Living with HIV/AIDS Global Fund The Global Fund to Fight AIDS, Tuberculosis and Malaria GMAI Global Media AIDS Initiative GNP+ Global Network of People Living with HIV/AIDS GPRA Government Performance and Results Act HAART (ART) Highly-Active Anti-Retroviral Therapy HAB HIV/AIDS Bureau NCCC National Center for Cultural Competence HCCN Health Center Controlled Networks HHS (DHHS) Department of Health and Human Services HIRE Health Improvement for Re-entering Ex-offenders HIV Human Immunodeficiency Virus HOPWA Housing Opportunities for Persons with AIDS HRBA Human Rights-Based Approach (to HIV) HRSA Health Resources and Services Administration HUD Department of Housing and Urban Development IAS International AIDS Society IAVI International AIDS Vaccine Initiative IDU Injection Drug Use(r) IGA Office of Inter-Governmental Affairs IHS Indian Health Service ISC International Steering Committee for People with AIDS L2L Linkage to Life LGBT Lesbian, Gay, Bisexual, Transgender LIFE Initiative Leadership and Investment in Fighting An Epidemic Initiative (U.S.) MAI Minority AIDS Initiative MAP Multi-Country HIV/AIDS Program (World Bank) MCHB Maternal and Child Health Bureau MDR-TB Multi Drug Resistant Tuberculosis MOU Memorandum of Understating MSA Metropolitan Statistical Area MSM Men who have Sex with Men MTCT Mother-to-Child Transmission NAPWA National Association of People With AIDS (U.S.) NARCH Native American Research Centers for Health NEP Needle Exchange Program NHAS National HIV/AIDS Strategy NIH National Institutes of Health NNRTI Non-Nucleoside Reverse Transcriptase Inhibitor N RTI Nucleoside Reverse Transcriptase Inhibitor OAA Office of the Associate Administrator OAH Office of Adolescent Health, OS OASH Office of the Assistant Secretary for Health, HHS OGAC Office of the Global AIDS Coordinator (U.S.) OHAP Office of HIV/AIDS Policy, OS OI Opportunistic Infection OMB Office of Management and Budget The History of the AIDS Epidemic in Black America, 2011 119

OMH Office of Minority Health, OS ONAP Office of National AIDS Policy, The White House ONC Office of the National Coordinator for Health Information Technology, OS OPA Office of Population Affairs, OS OpDiv Operational Division ORHP Office of Rural Health Policy OS Office of the Secretary, HHS OWH Office on Women’s Health, OS PACHA Presidential Advisory Council on HIV/AIDS PAHO Pan American Health Organization PAL Program Assistance Letter PCA Primary Care Association PCO Primary Care Office PEP Post-Exposure Prophylaxis PEPFAR President’s Emergency Plan for AIDS Relief (U.S.) PHI Primary HIV Infection PHS Public Health Service PI Protease Inhibitor PIA Performance Improvement Activities PLHIV People Living with HIV PLWHA People Living With HIV/AIDS PMTCT Prevention of Mother-to-Child Transmission PrEP Pre-Exposure Prophylaxis PSA Public Service Announcement PSPC Patient Safety & Clinical Pharmacy Services Collaborative RBM Roll Back Malaria RRNP Regional Resource Network Program RW Ryan White CARE Act, HRSA SAMHSA Substance Abuse and Mental Health Services Administration SAPTBG Substance Abuse Prevention and Treatment Block Grant SBIRT Screening, Brief Intervention, and Referral to Treatment SEP Syringe Exchange Program SPNS Special Projects of National Significance SSA Social Security Administration SSP Syringe Service Program STD (STI) Sexually Transmitted Disease (Sexually Transmitted Infection) TAC Treatment Action Campaign (South Africa) TB Tuberculosis TIP Treatment Improvement Protocol UN United Nations UNAIDS Joint United Nations Programme on HIV/AIDS UNDP United Nations Development Programme UNFPA United Nations Population Fund UNGASS United Nations General Assembly Special Session on HIV/AIDS UNICEF United Nations Children’s Fund USAID United States Agency for International Development VA Department of Veterans Affairs VCT Voluntary Counseling and Testing WFP World Food Programme WHO World Health Organization WTO World Trade Organization ZDV See AZT Danny Glover About the Black AIDS Institute

The Black AIDS Institute, founded in 1999, is African American HIV the only national HIV/AIDS think tank in the University United States focused exclusively on Black Aimed at strengthening Black organizational people. The Institute’s mission is to stop and individual capacity to address the HIV/AIDS the AIDS pandemic in Black communities epidemic in their communities, the African by engaging and mobilizing Black leaders, American HIV University is the comprehensive training and capacity building fellowship pro- institutions and individuals in efforts to gram developed by the Black AIDS Institute. confront HIV. The Institute conducts HIV policy research, interprets public and private Black AIDS Weekly sector HIV policies, conducts trainings, Black AIDS Weekly is the Institute’s e- builds capacity, disseminates information, newsletter of national HIV/AIDS related news, interviews and commentary relevant to Black and provides advocacy and mobilization Americans. from a uniquely and unapologetically Black point of view. Black Gay Men’s Network The Black Gay Men’s Network promotes the active participation of self-actualized Black gay What We Do men in all aspects of community life. It provides T opportunities for career development, social con- The Institute develops and disseminates nections, loving relationships, educational out- information on HIV/AIDS policy. Our first reach, skills-building, leadership development, major publication was the NIA Plan, which physical and mental health, financial wealth and launched a national campaign to stop HIV/ spiritual wellness. www.thebgmnetwork.com AIDS in African American communities by formulating and disseminating policy proposals Black Hollywood Task Force developed through collaboration with federal, state and local government agencies, universities, An initiative to bring together Black mem- community-based organizations, healthcare bers of the entertainment industry to use their providers, opinion shapers and “gatekeepers.” voice and influence to promote HIV/AIDS awareness in the Black community. The Institute 122 AIDS: 30 Years Is Enuf!

engages them to participate in public service written by and for students at historically Black announcements, make personal appearances and colleges and universities. www.ledgemagazine. integrate HIV/AIDS messages into their projects com. and performances. LIFE AIDS Black Treatment Advocates Leaders In the Fight to Eradicate AIDS Network (LIFE AIDS) is a collegiate mobilization initia- The Black Treatment Advocates Network tive whose mission is to educate Black college focusses on training, mobilizing and networking. students on the causes and effects of HIV/AIDS, The only collaboration of its kind, links Black and to create comfortable dialogues about sex Americans with HIV into care and treatment, and sexuality. strengthens local and national leadership, con- nects influential peers, raises HIV science and State of AIDS in Black America treatment literacy in Black communities, and The annual State of AIDS in Black America advocates for policy change and research priori- report comprehensively assesses the national ties. www.BlackAIDS.org/btan picture of AIDS in Black communities from epi- demiological, political, and cultural perspectives, CitySheet Series and offers recommendations for policymakers The CitySheet Series is a set of fact sheets and Black leaders. Each report assesses the prog- that provide background, statistics and resources ress made towards ending the AIDS epidemic related to HIV/AIDS in local and regional Black in Black America and holds accountable those communities. It is an invaluable resource for institutions and individuals which have advanced community stakeholders who want local infor- or hindered such progress. mation and potential partners in one succinct document. Greater Than AIDS Greater Than AIDS, a collaboration between the Black AIDS Institute and the Kaiser Family Foundation, in collaboration with the U.S. Cen- ters for Disease Control and Prevention, and in partnership with the Elton John AIDS Founda- tion, the MAC AIDS Fund and the Ford Foun- dation, is a media campaign built around the message that, as Black Americans, we are greater than any challenge we have ever faced. We are greater than AIDS. www.greaterthan.org Heroes in the Struggle Heroes in the Struggle is a photographic tribute to African Americans who have made outstanding contributions in the fight against HIV/AIDS. The Heroes In The Struggle exhibit has traveled around the country, raising aware- ness, challenging individuals and institutions to get involved in their communities, and generat- ing critical conversation about HIV testing and treatment. www.heroesinthestruggle.com Ledge Ledge is the nation’s first and only HIV/AIDS awareness, general health and lifestyle magazine

For more information or more copies of this report, contact: Black AIDS Institute 1833 West Eighth Street #200 Los Angeles, California 90057-4257 213-353-3610 b 213-989-0181 fax b [email protected]­ www.BlackAIDS.org