ENDING AIDS NOW * ART AS ACTIVISM * GLOBAL HEROES

LEARNLEARN FIGHT LOVE FIGHT LOVE

UNLEASHING THE POWER OF Peter Staley PHOTO: © William Lucas Walker HOW TO SURVIVE A PLAGUE Acts Up HTSAPxm_poster_ACADEMY_Jan_2013_v1 1/16/13 3:23 PM Page 1 PHOTO: © Karine Laval

discipline removed from the real world A LETTER FROM of ordinary people. It took up to a dozen years for a new drug to be tested and THE FILMMAKER released. Even after the onset of the AIDS epidemic, with its grim prognosis of just How to Survive a Plague bears witness. 18 months, a hermetic sense of academic The film documents what I saw with my sluggishness prevailed. They knocked on own eyes in those first long dark days of doors at the NIH and FDA, then knocked the worst plague in America—it shows them down when their pleas were both the tragedy and the brilliance not answered. leading up to 1996 when effective That’s how the “inside” forces flooded medication finally made it possible to in and demanded a place at the table think of HIV/AIDS as a chronic condition, for patients and their advocates in every like diabetes. I witnessed all this in my role aspect of medicine and science. Their as a journalist, not an activist. Instead of a task was daunting. In order to become bullhorn or placard, I carried a notepad full partners in the research, they had to and pen. There I am in the background of become experts themselves. I watched these frames. You can see brief glimpses Peter, Mark, Garance, David, and the of me nearly hidden in those crowds of others turn to textbooks and teach activists, pressed against the walls of themselves the fundamentals of science— their meetings or counting their heads as quizzing one another on the basics police officers carted them off, trying to of immunology and virology, cellular stay out of their way. biology and pharmaceutical chemistry. In fact, I spent the better part of ten They won their place at the table thanks years shadowing people like Peter Staley, to the activists who remained “outside,” Mark Harrington, Garance Franke-Ruta, but earned respect for their opinions and and David Barr. Why? Because to me it suggestions on the “inside,” and became was clear from early on that they were equal partners in the arduous work that doing something that had never been lay ahead. Together, they helped bring done before in the history of health about the treatment revolution that made care advocacy. Through the grassroots HIV survivable. institutions they helped build, ACT UP and Millions of lives have been saved thanks TAG, they invented a new kind of activism, to them. That’s a daunting legacy to leave one that has inspired generations since. behind by any measure. It shows us that And at a time when so little progress anything is possible—literally anything. was coming out of the halls of government Even the most disenfranchised people and Pharma, I believed that if anybody can change the world. was going to break the logjam and save Their legacy also includes a powerful lives it would be these guys—and that’s new model for social activism that is exactly what happened. equally relevant today. Their change- Key to their success was an making blueprint has been adopted by innovative approach they named “the thousands of other health activists, from inside-outside strategy.” breast cancer to autism. Pro-democracy On the “outside” stood the majority activists in Russia are studying their of activists in their ranks—shock techniques, replicating their sensational troopers who could mobilize quickly and street theater, and knocking on the stage dramatic protests that garnered doors of power themselves. LGBT rights worldwide media coverage. Humor and campaigners in places like Albania and ridicule were among their weapons, Greece are learning the lessons of ACT as were embarrassment and no small UP and TAG as they begin building new amount of audacity. They became movements for social change. the angry, hopeful, forceful face of For them, How to Survive a Plague the plague. does bear witness. And at the same time The goal of the “outside” ranks was it shows how to survive anything. You do to pry open the doors to the fortresses that by learning, and fighting, and loving. where decisions were being made—life- or-death decisions for anybody with an David France HIV infection—so that a small elite group January 12, 2013 of them could go “inside.” Back then, science was an Ivory Tower 02 TABLE OF CONTENTS

5 LEARN FIGHT LOVE The activism highlighted in How to Survive a Plague offers a model for success for today’s activists. CAMPAIGN: OUR 35 IMPACT SO FAR How to Survive a Plague aims to provide 9 ENDING AIDS NOW a model for advocacy and to energize the Some 30 years since HIV was identified work of awareness organizations. as the cause of AIDS, the fight to end the plague is at a tipping point. The tools and knowledge to stop AIDS are in hand. Now, the political will and money are needed to 37 IN THE HALLS OF POWER make what’s possible into a reality. Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious U.S. WINNING ON Diseases at the National Institutes of Health, reflects on his decision to invite 15 THE FRONT LINES activists to join decision makers at the This shortlist of key issues related to HIV, table—and the power of having patients will help to accelerate the end of AIDS, and participate in the development of health help make the world a healthier place. care solutions.

LESSONS LEARNED FROM INSIDE-OUTSIDE 17 FIGHTING AIDS 40 ADVOCACY Formidable AIDS activist Gregg Gonsalves Protesting against and working with the offers insight and advice for those battling decision makers. HIV—and other challenges—today.

ACTIVISM THEN 41 RESOURCE GUIDE 21 & NOW A sample of some of the world’s most An inter-generational conversation between effective organizations dedicated to Peter Staley—a Wall Street banker turned ending AIDS. legendary ACT UP activist—and Michael Tikili—a rising star of AIDS activism who works with Queerocracy and Health GAP. 47CONVERSATION STARTER Some suggestions for conducting a discussion focused on How to Survive 25 MAKING THEIR MARK a Plague. Six activists from around the world share what drives them, how they approach their work, and what it will take to make them feel victorious. 51 WORDS OF WISDOM AIDS activists weigh in on what is required to change the world. 31 ART AND ACTIVISM How to Survive a Plague captures the connection between art and activism 52 SO, NOW WHAT? in the1980s. Here, a look at how the Eight things to do today to start making relationship between art and activism the world a more peaceful, happier, and has evolved. healthier place for all. 03 04 story of the AIDS Coalition to men, it soon grew to include Unleash Power (ACT UP), a group people of all races, genders, and of several hundred people who sexual orientations. Their heroism challenged the powerful interests stands as an inspiration to that controlled U.S. government new generations of activists of budgets, federal and state policies, all kinds. LEARN medical research, drug approval, and global drug pricing. The first AIDS activists helped turn a diagnosis of being HIV-positive Diverse in background, these from an automatic death sentence activists were bound by a singular into a treatable disease. Their desire: to act—in the face of stigma success is evidence that when and government intransigence enough informed, empowered and FIGHT against a mysterious disease killing dedicated people come together their friends, family members, and at the right time, place, and in the lovers, and that threatened their right way—they can solve the most own lives. intractable problems of the world.

They exemplified the activist The strategies and tactics of AIDS ethos: they convened, empowered activists offer a model for all who LOVE themselves with information, want to change the world for harnessed their fury, and aligned the better. their actions and skills to address one of the world’s most difficult There are three main components Unleashing Your Power problems—finding drugs to keep to the model: learning, fighting, to Change the World: people with HIV alive. and loving. ACT UP’s efforts resulted in the Effective activists use their heads to Lessons Learned accelerated development and learn. They become experts about approval of what is today a list of their issue and about the political from How to 33 antiretroviral drugs that keep and power dynamics that must be people with HIV from developing addressed to effect change. Survive a Plague AIDS and dying. By engaging politicians, government leaders, They channel righteous anger in to Activism is not a spectator sport. and Pharma, the members of ACT right action; they use the symbolic UP, TAG, and the other advocacy power of the fist to organize, protest, The difference between those groups that worked with them, and be heard. In short, they fight. who watch the news and lament helped save the lives of millions the problems of the world and of people. And they love, leading from their those who get off the couch hearts, using their compassion and do something about Today, there are nearly 8 million and empathy to build coalitions them is the difference between people on treatment, living with HIV. and to work alongside people a passive citizenry and an And because that treatment reduces with whom they may have active democracy. viral transmission by 96%, it also fundamental differences. doubles as prevention. Securing, If you are reading this, chances are and enabling access to these drugs FasterCures a medical research you’re the type of person who gets has also kept countless children ‘action’ tank published a powerful off the couch. from contracting the disease report on the history of ACT UP in utero, prevented thousands and early HIV/AIDS advocacy Intention and engagement are of new infections, and spared titled “BACK TO BASICS: HIV/AIDS not automatically linked. Those millions of children from becoming Advocacy as a Model for Catalyzing whose actions effect meaningful AIDS orphans. Change” It summarizes the model social change dive headlong as follows: “Change is possible. into the world’s toughest The story of AIDS activism begins But in order to create change, problems—and stick with them, in New York City, San Francisco, the focused voices of advocates especially when the going and Washington, DC in the late must be heard through the din. gets tough. 1980s, and quickly spreads Individuals and organizations must across the country. Though do the hard work of becoming How to Survive a Plague tells the started primarily by gay white ready to question the status quo, 05 06 34.2 33 8 26.2 1.7 2.5 million million million million million the number of people the number of life-saving the number of people the number of people the number of AIDS deaths the number of new HIV estimated to be living antiretroviral HIV/AIDS with HIV/AIDS currently with HIV/AIDS globally globally in 2011; 24% fewer infections in 2011; down with HIV/AIDS around medications (ARVs) accessing ARVs not accessing treatment deaths than in 2005 from 3.2 million in 2001 the world available today worldwide

and be smart enough to present well-founded Understanding the eco-system of an issue alternatives. Strong leaders in government area is absolutely necessary for both who actually held the power, they never deviated must pave the path and prepare to stay the advocates—those working on the inside—and from their fundamental objective of securing life- course. Specific strategies with clear goals activists—those working on the outside—to be FIGHT for Health Care Justice saving drugs for all people with HIV. must be established in order to hold effective. Barriers to change are sometimes people accountable.” the unintended consequences of deep-seated Anger is a key driver for activists. It fuels some Finally, AIDS activists were relentless. They never bureaucracies; faulty, inefficient structures; people to greater levels of risk taking. Many of took “no” for an answer. They made sure their Using the lens of HIV/AIDS activism, the outline ill-informed leaders; or outdated laws the people who have changed the world were voices were heard and kept focused on their below explores the concept of “Learn | Fight | and policies. indignant enough to show up, stand up, push goals. When forced to retreat, they regrouped Love” in greater detail. back, and fight back. and returned to fight another day. Understanding the power structure––which people and what organizations control Legendary AIDS activist Larry Kramer, a founder of ACT UP, said, “We were fighting for our lives and for our friends…who were dying like flies all LOVE by Connecting LEARN about the Issues around us, so we were motivated.” with Others and Barriers to Change “Change is possible. That motivation was manifested within the Many people contemplating getting involved Simply knowing what is wanted generally, tradition of non-violence and civil disobedience in social change wonder whether individual such as improved medicine, gender equality, But in order to create closely associated with the work of Mahatma actions can really have an impact. The answer is or human rights, is not sufficient to effect Gandhi, and later Martin Luther King. Gandhi unequivocally, yes. social change. once said, “A small body of determined spirits change, the focused voices fired by an unquenchable faith in their mission History is full of examples of individuals who Powerful activists know as much, or more than, can alter the course of history.” catalyzed movements, from Susan B. Anthony the people they are trying to influence. They to Nelson Mandela, Vaclav Havel to Rosa are able to frame pathways to their goals and of advocates must be The members of ACT UP were those determined Parks. Some made a career of change; others articulate those pathways to those from whom spirits. They fought hard, but always non-violently. responded to a moment of action that inspired they are asking help. They took to the streets, made noise, stormed widespread change. None acted alone. heard through the din.” meetings, conducted “die-ins,” carried empty Early AIDS activists became experts on the coffins, and later, the actual bodies and ashes of Social change can start with one person, but it science of HIV and the systems by which drugs dead loved ones—they were not afraid to make only gathers momentum and reaches its potential are researched, developed, and approved. “BACK TO BASICS: HIV/AIDS Advocacy as a Model a scene. Their fury—and their message—was for maximum impact when individuals come Before they met with leaders at the Food for Catalyzing Change” – Michael Manganiello, HCM often captured by the press, but always by their together. Those who altered the world partnered and Drug Administration (FDA), the National Strategists, and Margaret Anderson, FasterCures. own cameras and video recorders. with others of different backgrounds and beliefs Institutes of Health (NIH), or other research and worked with them toward a common end. institutions, they did extensive homework. This Their weapons included clearly articulated helped them to secure seats at the tables where demands, arresting graphics on t-shirts and The strong sense of community and shared key decisions were being made and to have decisions at each juncture––is also critical. placards, memorable and often shocking responsibility captured in How to Survive a maximum credibility when they advocated for For ACT UP, working with a leader such as Dr. slogans—and a great deal of courage. Many Plague was instrumental in sustaining a decade- change at those tables. They also knew how to Anthony Fauci on the inside, was arguably the who fought to change the way the world long fight. Love, for themselves, for each other influence the political leaders who set policies equivalent of public demonstrations outside treats people with HIV have been jailed. More and for life, gave AIDS activists the strength to and budgets and how best to attract media the NIH. than once. persevere—and triumph. attention—two things that go hand-in-glove. Finally, it’s about money: how it flows and who They were laser-focused in their mission. Whether Great activists master the language of their controls it. Understanding and influencing the storming the halls of power with banners and issue or cause. They become fluent in the budget process can be essential to the success bullhorns or meeting with researchers, drug experts’ terminology. of a movement. developers, government officials and others

07 08 (PEPFAR) Blueprint: Creating an AIDS-free Generation.” The plan lays out a comprehensive ENDING AIDS NOWroad map by which many nations working together could begin to end the pandemic. The tools and knowledge to stop the AIDS pandemic are in hand. A new era of fierce AIDS “The goal of an AIDS-free generation may be advocacy is required to secure the political will and ambitious,” Clinton stated a year earlier, “but it the resources necessary to turn what’s possible into is possible with the knowledge and interventions a reality. With a quick response now, an AIDS-free we have right now. And that is something we’ve generation—and even a vaccine and cure—could never been able to say without qualification be possible in our lifetimes. Here, we examine the before. Imagine what the world will look like when opportunity of the moment and how we best finish we succeed.” what the activists in How to Survive a Plague began. The heroes of How to Survive a Plague By Regan Hofmann accelerated the development of life- saving medication. The urgency of Some 30 years since HIV was identified as the their fight was palpable and it was driven by cause of AIDS and 17 years beyond the activists’ personal desperation; every day, they watched victories highlighted in How to Survive a Plague, their friends and lovers get sick and die, even as the fight to end AIDS is at a critical juncture. Global they worried about their own health. In about 9 experts agree: the end of AIDS is possible. years, the relentless work of the early AIDS activists helped turn a diagnosis of HIV from a near certain It has been proved that effective HIV treatment death sentence to a mostly survivable condition for doubles as prevention by reducing the probability those who could access care and treatment. of viral transmission by 96%. When more people access treatment, there are fewer new cases of HIV, The antiretroviral treatment that early AIDS activists fewer AIDS deaths, and fewer AIDS orphans. The fought for has prevented millions of new infections faster we get more people linked to care, the more and millions of AIDS deaths, and it has spared dramatic the declines in infection rates, illness, millions of children from being orphaned. That’s and death. While more widespread treatment the good news. The bad news is that only 8 of the is key to beginning to end the AIDS pandemic, more than 34 million people estimated to be living it will ultimately take a vaccine and a cure to with HIV globally currently have access to these actually end AIDS. There have been significant drugs. The remaining 26 million people (and breakthroughs in vaccine and cure research—at more each day) face imminent illness and death. least one person has been cured of HIV infection More than 750,000 of those living with HIV—and and while the method by which he was cured is without treatment—live in the United States. not easily replicable, the insights offered by his case have opened up several new avenues for So the battle is far from over. Ironically, the potential cures. existence of effective treatment has led to a dangerous complacency about AIDS and diluted Given that we now know how to stop AIDS, the the urgency of the fight. But for those who can’t burning question is whether or not we will seize the get treatment, having HIV today is every bit as opportunity before us to spare the lives of millions horrific as it was in the early 1980s. And there are of people who need not get sick or die. more people living with HIV on the planet than ever before. When ACT UP first started, thousands In November of 2012, U.S. Secretary of State of people were dying each year from AIDS. Today, Hillary Rodham Clinton announced the release of millions are dying—even though the medication to “The President’s Emergency Plan for AIDS Relief save them exists. 09 10 Among the goals of early AIDS activists was the and intellectual property laws governing the In order to be successful, prevention campaigns development of life-saving medications. Today’s In addition, HIV treatment given to pregnant formulations of HIV medications are resulting in must be created and tailored to resonate with AIDS activists are called to fight for universal women living with HIV can reduce the chance that a crisis of access to care. their target audiences. Ideally, they acknowledge access to those medications for people with their baby will be born with the virus to less than the realities and challenges of the real world and HIV—and to push for vaccines and the cure. 1-2%. And if a short course of HIV medications The high price tags of the newest medications offer strategies that are feasible. is given to people who may have been exposed mean that even among the lucky 8 million on For example, suggesting that women with no The battle to begin to end AIDS must be fought to the virus within 72-hours (an approach known treatment, many are limited to taking older drugs education or income change their behavior and simultaneously on four key fronts: access to as “post-exposure prophylaxis” or “PEP”) HIV that have serious side effects, which, by making stop having “survival sex” is less effective as a care; prevention; human rights; and research. If infection can possibly be prevented. It is clear them harder to take, can undermine adherence prevention strategy than offering them stipends modern activists, governments, non-government that universal access to HIV treatment both saves to drug regimens and treatment efficacy. that address the root motivation for the behavior. organizations, the private sector, and global lives and helps stop viral spread. Women with money are less likely to have health organizations are willing to invest to make unprotected sex for money. rapid headway in these four areas, there is real To ensure that medicine is delivered to all who PREVENTION hope that millions more might survive this plague. need it, widespread, voluntary testing must Offering age-appropriate, comprehensive sex be made available to everyone at risk for Consistent and effective treatment education to everyone is another prevention Here, a closer examination of the four key front HIV. And the public needs to be re-educated doubles as prevention. But since strategy. Educating all sexually active people how lines in the battle to end AIDS. about what constitutes “risk.” Anyone who has less than one quarter of HIV positive to have sex more safely can lead to behavior unprotected sex is at risk for HIV and should get people are on treatment, the need for change that would protect individual and public other types of prevention remains. ACCESS TO CARE tested regularly. health and save future health care dollars. Health care system infrastructure and support Condoms (male and female) work, and The possession of tools of prevention (such as In 1996, a new class of antiretroviral HIV services must be improved—and made more they are cheap. Needless debates over the condoms or clean injection equipment) has drug, known as “protease inhibitors” affordable—so people have ways to access connection between the dispersal of condoms recently been presented in several notable or PIs, changed the AIDS treatment testing and treatment. and increased sexual activity have hindered criminal trials as “evidence” of drug use or sex landscape overnight. Protease inhibitors condom dissemination campaigns in some parts work. The publicity surrounding these cases has use a high-tech mechanism for preventing viral So how do we increase the number of people with of the world. Research indicates that neither raised questions over whether these prosecutions replication. Taken in combination with other HIV on treatment? Two ways. One, the nations comprehensive sex education nor the dispersal will make people less likely to use condoms and antiretroviral medications (an approach often that can afford to must increase their support of condoms result in increased levels of sexual sterile works. Refusing to address the real world called “cocktail therapy”), PIs stop HIV from for their own programs that provide HIV testing activity. But because science does not always trump needs of sex workers and injection drug users destroying the body’s immune system and and care to their people. And two, the wealthiest myth or spiritual beliefs, prevention remains more by driving them away from tools of prevention causing illness. nations must also contribute as much as they can challenging than it arguably should. Voluntary and limiting their access to health care is likely to multilateral programs such as the Global Fund adult male circumcision has also proved to be to undermine both individual and public health. Protease inhibitors were so effective that they even to Fight AIDS, Tuberculosis and Malaria, as doing an effective form of harm reduction because it helped people who had already developed AIDS. so will help address the funding needs of less significantly reduces the risk of HIV infection. When people who were quite sick took the PI wealthy nations with high HIV burdens. Availability of clean injection equipment also HUMAN RIGHTS “cocktail,” their bodies suddenly began to rebuild results in lower rates of HIV infection. their immune systems and heal. The recovery was As part of making health care more affordable The end of AIDS will be possible only if so dramatic it was coined the “Lazarus effect”— for people with HIV, HIV drugs need to be priced Biomedical forms of prevention exist as well, in the human rights of all people, especially referencing the story of Jesus raising Lazarus at levels that allow more people—and nations— the form of pre- and post- exposure prophylaxis those with or at risk for HIV, are better from the dead. access to the best available treatments. Currently, (PrEP and PEP). And newer ones, like microbicides protected. Failing to address the crisis there are battles around the globe over the (topically applied gels and creams containing of inequitable human rights around the world Continued research has led to the development pricing, production, and distribution of generic ARVs), are being studied for efficacy. undermines prevention, testing, and treatment of more than 33 drugs to control HIV. Further, in HIV medications, particularly in Europe, India, efforts, and makes it harder to secure the 2011, it was proved (in a study known as “HPTN and the Far East. For example, manufacturers HIV testing is related to prevention. Knowing political will and financial resources necessary to 052”) that effective HIV treatment doubles as of non-generic drugs are trying to block access one’s status can lead to changes in behavior end AIDS. prevention. Medicine taken by people with HIV to generic drugs in Europe. But while some that can protect others (such as practicing safer to protect their own health protects others by European nations pay for non-generic drugs for sex), or commencing treatment, which can also Now, more than ever, human rights must occupy lowering—by a whopping 96%—the risk of the people dependent on public health services, prevent transmission. the center of the global struggle against HIV/ viral transmission. others cannot. Struggles over drug pricing AIDS. At the 2006 United Nations’ High Level

11 12 Meeting on AIDS, global leaders issued a correlation between people being safe and having relatives, some serious side effects remain. (And statement recognizing that “the full realization of improved health. too few of the 8 million people currently receiving all human rights and fundamental freedoms for treatment are on those newer medications.) The all is an essential element in the global response Guaranteeing equal access to quality health care drugs themselves often lead to conditions that to the HIV/AIDS epidemic.” for all people will help stop AIDS. Prosecuting require additional medical care, increasing the those who commit anti-LGBTQ and racial hate cost of long-term care for people with HIV. AIDS The biggest enemy of these rights is stigma. crimes will help. Defending vulnerable women vaccine efforts have been ongoing since 1984, and children and securing overarching gender with little progress. A working vaccine could stop Even after 30 years and all the campaigns equality will help. As would ensuring all people transmission completely. As with polio, and it dedicated to education and awareness, the the basics necessities of life (food, water, shelter, could even eradicate HIV altogether, sending it stigma surrounding people living with HIV safety). People are less likely to attend to their the way of small pox. To get there, we will need remains an enormous barrier to people knowing health and care about their future or the future more money and better ideas, two prime targets their status and seeking medical help. of their nation or their community when their for activism. survival is at risk on a daily basis. Due to the many misperceptions and myths There is a period of time, just after exposure, surrounding HIV/AIDS, people living with HIV are Clearly, it will take more than pills and prevention when a person may be infected with the virus and often ostracized, disenfranchised, discriminated tactics to stop the AIDS pandemic. It will also still not test positive for its presence. This means against, unfairly criminalized, and in some require a major focus on ensuring human rights there will always be people who will be unaware places, even beaten or killed. Faced with these for all. Ending AIDS requires the permanent they have HIV and could unwittingly pass the potential dangers, it’s easy to understand why correction of some of the world’s worst ills and virus along to someone else. Preventive vaccines many at risk are too afraid to come forward imbalances. The things we need to do in order to would resolve this issue. to find out or disclose their HIV status or seek eliminate AIDS will make the planet a safer and medical care. healthier place for everyone. Cure science has had some major breakthroughs in the past 24 months and certain insights and These acts of discrimination and, in some proofs-of-concept (such as the Berlin Patient, cases, criminalization, borne of misplaced fear SCIENTIFIC RESEARCH the first person cured of HIV) have helped focus and prejudice, only serve to deepen the stigma research around a cure, honing scientists’ efforts around HIV. In doing so, they prevent people Even if we could manage to quickly test and piquing investors’ interests. Increasing from educating themselves and others about and treat all the people living with HIV, funding for cure research at this time is a critical the disease. They also discourage people from did a much better job on the prevention piece of ending AIDS. Ironically, a vaccine and seeking medical care to discover their status or front, and succeeded in defending the cure may one day conflate, as the AIDS cure to get the necessary medical help. The shaming, everyone’s human and health care rights, those could involve, as part of a multi-pronged attack, threatening, harming or jailing of people with things alone will not eliminate AIDS. We also a therapeutic vaccine. (Therapeutic vaccines are HIV is self-defeating as a prevention strategy need vaccines and a cure. those given to people who already have a disease and backfires as a means of “protection.” to help cure them. Preventive vaccines are given Aggressive funding for the research and to help people avoid contracting disease in the Similarly, outdated and unnecessary travel development of vaccines (preventive and first place). And given that the discoveries from restrictions for people with HIV only serve to fuel therapeutic) and for a cure to AIDS are essential. AIDS cure research often shed light on efforts the fire of people’s fear and prejudice. While It is far preferable to control the virus without the to control and cure other diseases, including much headway has been made in removing use of lifelong treatment, both in terms of the certain types of cancers, accelerated investment many of the early travel bans, 45 countries health of people with HIV and the expenditure of into ending AIDS may also advance solutions for still maintain some type of travel restriction for health care dollars. other life-threatening disease. people living with HIV. The cost to administer HIV treatment for the Bolstering the protection of people’s human lifetimes of the 34 million people estimated to rights will allow the tools of prevention, testing, be living with the virus globally is prohibitive. It’s and treatment to be applied more widely and also not the best medical option. While the newer more effectively in the field. There is a direct HIV drugs have fewer side effects than their older

13 14 of sterile injection equipment (those against it that STIs will spread. And as treatment can argue that doing so condones usage despite double as prevention when someone is living data to the contrary) and safer injection with HIV (antiretroviral therapy can reduce sites leaves people who use injection drugs the risk the virus will spread by 96%), denying with too few options to manage addiction sex workers who are living with HIV access to safely. Opiate substitution therapy (such as care undermines their individual health and offering methadone to replace heroin) has public health generally. Activists are working WINNING ON THE FRONT LINES been shown to halve the risk of HIV infection. to secure equal civil and health care rights When fighting to end the AIDS pandemic, Activists are working to ensure that these for sex workers. BY FIGHTING HARD ONactivists THE wage FLANKS battles in arenas both directly proven forms of harm reduction get to more and indirectly related to the virus itself. Many people who could benefit from them. INCREASED FUNDING FOR GLOBAL HEALTH of the problems that need to be conquered Multilateral funds like the Global Fund for to end AIDS will make the world a healthier ACCESS TO PAIN RELIEF MEDICATION AIDS, Tuberculosis and Malaria and bilateral place for all. Here is a short list of key issues People with recurring or chronic pain who programs in the U.S. such as the President’s related to HIV that, if addressed successfully, have insufficient access to pain medicine Emergency Plan for AIDS Relief (PEPFAR) and will help accelerate the end of AIDS. often turn to self-medication with illegal others deliver health care services for people drugs, including injection drugs––an HIV with HIV while supporting the capacity of WIDESPREAD TESTING AND ACCESS TO NEW, risk. But the potential for abuse, addiction, existing health care systems, expanding AFFORDABLE TREATMENT TO ADDRESS THE and dependency on pain killlers has resulted general health care infrastructure, bolstering PANDEMIC OF HEPATITIS C in restrictions on the availability of certain the recruitment and training of health care Hepatitis C is another viral pandemic for pain medications. Incidents of prescription workers, and offering a variety of related which there is now a cure. If a person’s HIV pain relief drugs being taken from medicine health services to people who enter the system is treated but hepatitis C infection is not, they cabinets and sold on the street or abused for a single health concern. Activists are remain at risk for premature death. If only by teenagers for recreational purposes, as working to encourage high levels of support HIV is treated, a person can’t achieve full well as legal cases where physicians have for health care on the part of all nations. good health and rates of morbidity increase. been convicted for “over prescribing pain Therefore, people with HIV should be medications” have led to diminished access For a list of organizations supporting these screened for hepatitis C, too. New treatments to necessary pain relief medication for people and other issues, please see page 41 of for hepatitis C are much easier to undergo who legitimately need it, particularly among this guide. than previous ones; they have far fewer side patients in disenfranchised populations. effects and therefore have a high success Patients’ rights activists are pushing to ensure Regan Hofmann is the former editor-in-chief rate. But the newest treatments for hepatitis that patients can get the medications they of POZ and poz.com, an AIDS activist, and C are expensive and not easily accessible to need to live comfortable and healthy lives. a consultant working on global health. She many in need, particularly in the developing is on the board of the Foundation for AIDS world. Activists are lobbying for increased DECRIMINALIZATION OF SEX WORK Research (amfAR), is a global ambassador testing for hepatitis C and for lower prices The criminalization of sex workers—an effort for the Elizabeth Glaser Pediatric AIDS and greater access to the newest hepatitis to control and limit sex work—backfires as a Foundation, and serves on the CDC/ C treatments. means of protecting public health because it HRSA advisory committee for HIV and keeps those who are engaging in sex work Viral Hepatitis. BETTER PREVENTION AND TREATMENT from accessing educational and prevention services, including screening for sexually STRATEGIES FOR INJECTION DRUG USERS transmitted infections (STIs), and accessing It has been well documented that providing health care in general. Given that condoms sterile injection equipment (including syringes) (male and female) and lubricants can reduce to people who inject drugs can greatly reduce risk of STIs, preventing sex workers from using the spread of HIV and hepatitis C. Maintaining these harm reduction tools heightens the risk safe locations in which people can inject drugs using clean injection equipment have also been shown to reduce the spread of disease. But resistance to the dissemination 15 16 PHOTO: © [email protected]

LESSONS LEARNED FROM FIGHTING AIDS BY GREGG GONSALVES

So you’ve just seen How to Survive a Plague. What next? Well, first of all, realize you’ve only seen the first act of a long, long story. The fight for AIDS treatment is far from over: 15 million people around the world need immediate access to these life-saving drugs and only about half of those in dire need have them now. It’s estimated there are more than 34 million people living with HIV around the world. With only about 8 million currently on treatment that means that 26 million people all told are living with HIV—and without the medicine that can save them. The urgency you saw, and perhaps felt, watching David France’s film is waning now. After more than 30 years, people in the United States and around the world have grown weary of hearing about HIV/AIDS. While the crisis is far from over, the funding for AIDS is in danger of being cut. If that happens, the accomplishments of the AIDS activists described in the film could easily be washed away in a new era of apathy and neglect.

You have a role to play.

17 18 Here are some pointers to help you become an active part of 5. COME TOGETHER. Don’t mourn, organize. Gather the solution to spare millions people in your community to work from AIDS: with you. Try to reach out broadly to different groups that represent 1. JOIN UP. a wide spectrum of people where How do you start? Well, by you live. Meet regularly, give 7. CONQUER YOUR starting! Back in the 80s and 90s, yourselves tasks, and keep up AIDS activists knew nothing— 3. MEET WITH the momentum. The Monday FEARS BY JUST except that silence=death and night meetings at ACT UP kept that inaction was worse than LEADERSHIP. us on our toes; you can do the Go see your elected officials. DIVING IN. making a few mistakes. To help same if you keep to a schedule, You don’t have to storm the NIH The earliest groups of AIDS defend all the ground that’s been have things to do, report back to or participate in a die-in at the activists discovered that effective gained in the fight against AIDS, each other, and strategize about FDA to make a difference. In advocacy isn’t rocket science. contact a local AIDS organization and think through the issues as the U.S., it’s easy to make an The biggest barrier to activism is and ask how you can help a group. mobilize resources locally, in your appointment with your members getting started. If getting started state or province, in your country, of Congress and their staff. Tell seems scary and daunting, know and across the globe. them why HIV/AIDS is important that engaging doesn’t have to be to you and let them know that that hard. Really, just take the first

you expect them to support AIDS 6. GET MAD. step. And remember, there are Don’t be afraid to protest: funding in Congress, champion others out there, like me, who’ve perhaps your elected official isn’t global health, and not cut funds got your back. ACT UP comprised 2. STUDY. supportive of HIV/AIDS. Don’t when the epidemic is still with us. only a few hundred members in Know your %&@#. Passion and let that stop you. Remember: he Ideally, bring a friend: show your the beginning. Now, there are commitment can’t replace a or she works for you! You may elected officials that it’s not just many, many more people around strong grasp of the issues and have to spice things up a bit: a you, but a number of people in the country and around the world the facts under consideration. picket outside of the local office is your community who care about “acting up.” All of us need all of In the old days, we had to learn a simple thing to do. In this case, HIV/AIDS. you to join us. things from scratch, nowadays the more the merrier. A group of you can turn to the Internet to people handing out fliers with the find what you need. For great facts and big posters with short and accurate insight on HIV/AIDS 4. WRITE. statements about your elected policy and statistics, visit amfAR. officials can make a big difference. Gregg Gonsalves started his org (amfAR is the Foundation for Follow up on meetings with activist career with ACT UP elected officials and their staffs Having a diverse group of people AIDS Research), or kff.org (the site with you is important. If you can in 1990. He discovered he of the Kaiser Family Foundation). with letters or emails. Send them was living with HIV in 1995. A new data and reports when they get civic leaders, religious figures, When doing your own research, health care workers and others to long-time advocate for better be careful. There is a lot of emerge. Write a blog or an op- approaches to AIDS research and ed for your local newspaper. go with you, even better. Roping garbage out there, so check and in influential allies is critical. an ardent fighter for people’s double-check information before Remember that most people don’t rights to accessing care and running with it. know what you know: AIDS is still treatment, Gonsalves is currently a crisis and misperceptions that a Visiting Lecturer in Law at Yale it’s under control could lead to Law School, co-director of the the danger of slipping backwards Global Health Justice Partnership, after we’ve made so much and remains, today, one of the progress. In all of your writing, leading AIDS activists in the world. keep your correspondence simple and make it personal; make a few key points and try to connect with your reader. 19 20 personal beliefs. So I jumped on board with Health GAP and have been working with them since. ACTIVISM THEN PS: How did your friends and family react to your activism? MT: When I was arrested for participating in my first act & NOW of civil disobedience, many members of my immediate family freaked out. I think because I am a black man Legendary AIDS activist Peter and the idea of getting arrested doesn’t sit well [with our community]. After my arrest, when I was trying to raise Staley talks with newly-minted money for jail support and a lawyer, people were not that supportive. I think they felt if I was going to jail for a fighter for human rights and cause, money should already be there [to help me]. But health care rights Michael the organizations I was working with didn’t have massive amounts of money. In the beginning, people thought I was Tikili of Queerocracy and Health kind of crazy. But once I started showing up in newspapers and on TV, people became more supportive. Since that GAP about what it takes to be an time, they’ve understood what I’m doing.

effective change agent—and how PS: I found the same thing. When the issue you’re fighting for appears in the media in the context of a good story, it yesterday’s lessons apply to today. tends to impress family and friends and they get behind you. But people can be nervous before that happens. I Michael Tikili: How did you become an AIDS activist? once had a boyfriend, Kevin Sessums, who freaked out when I told him I was working to put that giant condom Peter Staley: My primary motivation was finding out I was over Jesse Helms’ house. He thought you couldn’t do that HIV-positive in late 1985. It was a very frightening time. I to a U.S. Senator and worried I was going to end up in was deeply closeted and working as a bond trader on Wall jail for 20 years. He cried on the shoulder of one of his Street. The [news that] Rock Hudson [had AIDS] had just hit, best friends, David Geffen. Geffen sided with me and said, the country was in a panic and there were no drugs [to save “Kevin, this is who Peter is and what activism is and you’ve people from AIDS]. A diagnosis of HIV was considered a got to support him and trust he knows what he’s doing.” I very quick death sentence. was having trouble raising the money to build the condom because it was huge…it had to go over a two-story house. MT: What did you do when you were diagnosed? To my surprise, David Geffen paid for it. He handed me a giant wad of cash—$3,500—and said, “Don’t ever tell PS: I told my family and tried to build a support network. But anybody I paid for this.” But 25 years later, the story’s I was desperate to find treatments to save me. As I looked gotten out and he doesn’t seem to mind. into it, I realized the government wasn’t doing anything. My

frustration began to build and about a year and a half later, PHOTO: © William Lucas Walker MT: How critical is the role of good press to the impact ACT UP was born. I passed their very first demonstration on of activism? my way to work one morning and decided I had to be a part of it. For a year, I continued to work on Wall Street and went PS: It’s all about the press. If you do an action and there’s to ACT UP meetings at night. I couldn’t sustain the double no press it’s like a tree falling in the woods. An action is life. My CD4 cells crashed and forced the issue. I went on a failure when it doesn’t get good media coverage. There disability right before ACT UP’s one-year anniversary in are some benefits to the activists themselves for just having 1988. I came out as a full-fledged AIDS activist in their first built up the courage to carry out an action and actually anniversary demo where I got arrested and appeared on the threatening those closets. But it was a real juggling act and Back then, they thought you were going to be dead in pulling it off. But from a movement perspective and in local news channel. very emotionally draining. Ultimately, something had to two years so they paid you. So Michael, how did you get terms of [the impact] on the issue you’re fighting for, the give. So I left Wall Street and went on disability. The disability become an activist? press is essential to really help the cause. I try to always MT: Was it difficult to be an activist while working on checks allowed me to work as a full-time volunteer activist be mindful of that and ask, “Am I doing this action just for Wall Street? for ACT UP and activism became my entire life. MT: Activism happened naturally for me. When I moved myself or will this really help the movement?” I think you back to New York after graduate school, while searching should only pull the trigger [on an action] if you’ve got PS: It was hard. Mostly because of how difficult it is to live MT: How did your life change? for community, I started getting involved in Queerocracy. some high degree of confidence that the latter is true. It in some sort of closet. I had three closets: I was hiding my There, I came across Health GAP. I was always passionate can become dispiriting to do a series of actions that don’t sexuality, the fact that I was HIV positive, and the fact that I PS: Life was just much easier. I flourished. I probably wouldn’t about HIV/AIDS, particularly on the global level, and [I was end up registering [with the wider world]. was an activist. I wasn’t going to very many demonstrations have if I didn’t have that financial lifeline of a disability check. interested in combating] how the lack of treatment access because I was afraid of getting caught on TV or appearing In the early 1980s it was much easier for people with HIV to was [hurting] people in the developing south. Particularly MT: Tell me about your first arrest… in a photo. So I became head of ACT UP’s fundraising get disability. All you had to do was say, “I’m HIV positive,” because I still have family in West Africa, an organization committee. That allowed me to be involved without and the government would say, “Fine, here’s your check.” that helped others in another country resonated with my 21 22 PS: It was at ACT UP’s first anniversary demo. It harder in general today for people to are nowhere close to you. You’d be MT: I agree. I’ve been to actions where involved affinity groups—small groups of activists be activists. really surprised by what a single tweet I didn’t know anyone and I felt isolated all agreeing to get arrested together. Wave after can do, especially a celebrity tweet among a crowd of thousands. wave of people sat down and blocked traffic at the PS: You’re so right. With the current since many are followed by millions corner of Broadway and Wall [Street] in Manhattan. economy and people struggling for of people. PS: How do you galvanize today’s I joined one of the first waves. There was so much work there’s a lot on everybody’s youth to become involved in activism? camaraderie that day and well over a hundred plate. That doesn’t mean they don’t PS: I agree. Social media is a great arrests. To be surrounded by that kind of energy care about the world. Today’s activists outreach and recruitment tool and MT: I cater my messages to my made it so much easier and thrilling. It really helps don’t have the advantage of what a good way to influence friends and audience. If I’m talking to a younger to have a larger community behind you and to have really fed ACT UP—people watching wider circles of people. It can serve audience, I’ll highlight the fact that a well-organized action with lawyers on standby their lovers and friends dying all as a way to almost bypass having to HIV/AIDS is not over and that the and volunteers at every police station working on around them. That was a huge get press stories about certain actions. rates are still high and that we need your release. What I most remember fondly was motivating force. It’s a lot harder to If you’re savvy enough and you film advocacy to let people know that we’re our time in jail. There were dozens and dozens of build movements and community your own civil disobedience or have still at risk and to keep them safe. gay men and lesbians poking fun at the cops and today. My generation needs to cut somebody film it for you, you can get it It’s good to tailor your messages as whistling at them when they walked by our cells. yours a break in that regard, but it up on YouTube in seconds and it starts specifically as possible. For example, We started singing campy theater songs together. doesn’t get any of us off the hook. getting tweeted around and getting if you’re talking to women, emphasize It was just a blast. I have very fond memories of my How does Queerocracy try to expand posted on Facebook [and the word the importance of the need for first arrest. How about you? its base in this environment? spreads]. The down side is it can fail to prenatal care for women with HIV. It’s reach the broadest possible audience; really important to mention something MT: I’d always been afraid of getting arrested MT: We go after anyone who is queer it often ends up just preaching to the that will resonate specifically. because as I was growing up it was nailed into and tell them they should be doing converted. But social media is a great my head that I should avoid it and not have a more than just going to gay bars. It way to get your action out there and PS: It always helps to show examples record like many men of color. The idea of being usually works. I’m pretty convincing at of how activism can actually change arrested—even in the name of activism—was times. I’m starting to believe I have a the world. I think there is a lot of unsettling at first, but it did make a difference to be knack for it. It’s different to answer that “I feel a lot of the people who cynicism out there these days about arrested with friends. My first arrest was in upstate question for the AIDS movement. I feel contribute to the HIV movement being able to do that, especially New York. We were protesting [AIDS] budget cuts. a lot of the people who contribute to are concentrated in AIDS service with our political system the way it is. We shut down the Capitol by blocking all the the HIV movement are concentrated in organizations and work with an But change has happened through entrances. It was beautiful. They took us in and we AIDS service organizations and work agenda that directs where and history. When I first got involved in all hung out in a little conference room together with an agenda that directs where and how individuals get involved.” ACT UP, somebody said I had to see playing cards and shooting the breeze. how individuals get involved. AIDS the documentary The Times of Harvey organizations are not unified in one Milk. It blew my mind when I saw the PS: How many times have you been arrested now? direction today. It would be very hard inspire those who are on your side. California-based community beat in this landscape to get everyone on No one has figured out how to use the back a vile referendum that was being MT: I think six. How about yourself? the same page. Internet to replace the experience of a voted on statewide that would prevent group of people coming together in gay people from being teachers. PS: Ten. Exactly ten. And because of the amazing PS: I agree it is harder to get everybody a room and strategizing about what To see the success of that activism lawyers ACT UP always had I don’t have a record, into the same room these days, but I to do. Chat rooms can’t really do it empowered me. That’s my hope for which is very cool. When I got arrested back in the think [that] it’s essential. That goes to effectively or fast enough. There is How to Survive a Plague. It shows that day, I was doing it as part of this huge organization a question I have about the Internet nothing like a group of people riding activism is hard, but that ultimately, it and at a moment in time when the gay community and social media—two things your the emotional rollercoaster created can work. rose up in unison. These days, activism is generation has today that we didn’t when something sparks in somebody’s conducted in a very different social context. In have in ACT UP. How helpful are they head, they think, “This might be a MT: What advice would you give to many ways it’s harder if you don’t have an entire to modern movements? great idea,” they raise their hand, engage today’s activists? community behind you, participating at the same they give an impassioned speech, time. How do you feel about your generation and MT: I love and swear by social media. and instantaneously, the room comes PS: I find it a very difficult question the willingness of people your age to participate in [Learning to wield it well] is a right alive and people are like, “Yes! That’s because at ACT UP we didn’t do much [modern] social movements? of passage for a modern activist. what we could do.” And someone outreach. We didn’t drag people in. A modern movement can’t survive else chimes in with, “And we could do People were kicking down our doors MT: Once, getting arrested was sort of a badge of without social media. I was trained this on top of it,” and the feedback and flooding in on their own. The honor and people respected you for it. Now, there’s that to get people to actions you have creates an explosion of energy and drive to be an activist has to come such tension between police and all protestors, to call them three times. But today, creativity. You always need to have a from within. This work is not easy. And especially in New York City. I think because of that, a lot of people rely on Facebook to central place where people can come the change doesn’t happen overnight. people aren’t as willing to be arrested because you disseminate information. And Twitter together face-to-face and feed off But hopefully, reminding people that don’t know how you’re going to be treated in jail has a huge impact. Tweeting at people each other’s emotions and creativity. change can happen is enough of a or how long you’re going to be there. I think it’s allows you to interact with people who spark to get them engaged. 23 24 Jeremiah Johnson

MAKING Amirah Sequeira THEIR MARK Robert Suttle Six young activists focused on social and health care justice share Loon Gangte what drives them to try to Moses Mulumba change the world— for the better

NAME: DEVARAH (“DEE”) BORREGO Dee Borrego MASSACHUSETTS, USA

Org(s) with which you advocate: HIV Prevention Justice Alliance (preventionjustice.org) and U.S. Positive Women’s Network (pwn.usa. org). Twitter: @USPWN Traditional media that matters most to you: Film and television. As a child of the ‘80s, I grew up with TV and movies that offered a Why you do what you do: It’s important as young people that we learn from lot of strong, positive messages around building a sense of identity. But our elders and come together to combat this epidemic. When I was infected, I was these messages never included any representation by the queer community, extremely undereducated about what it means to be HIV positive today. I believed especially transgender people. Nowadays, there is so much more visibility of that HIV was a death sentence, and it was only through learning more about the virus trans people on TV and in the movies that public perception of trans people is and myself that I found the strength to share my own story. If my speaking out and being changing. However, there is so much less focus in film and on TV about HIV than I honest about my experiences can help another young person remain HIV negative, then it’s would like to see. The visual media is the way young people, like myself, are most able worthwhile. I’m blessed to have a strong support network that helps me to stand up and advocate to relate to the world around them. for other HIV-positive transgender people. I use my voice to advocate for my community. Social media has changed activism by...making it easier to reach populations, like the trans The most powerful lesson you have learned from the work of ACT UP is: To persevere and keep talking about community, which are often very isolated geographically. Social media brings people together who HIV. The straight forward messages ACT UP brought us, like SILENCE = DEATH, were incredibly impactful on might otherwise feel completely alone. Social media campaigns have a lot of power to sway public my own activism. I firmly believe that if we don’t keep talking about HIV/AIDS, we will continue to have people die opinion on important matters, like equality for transgender and gay people and the need to protect oneself from the virus. For me, that idea expands to include [conversations about] gender identity and sexuality, because if we from HIV. Connecting with others in a multitude of ways is powerful in that it lets us show that being HIV don’t talk about our sexuality, our gender, and the very core of who we are in an honest and open way, society will positive or transgender is not something to be feared, hated, or criminalized. continue to devalue the lives of people in our communities. You will feel most successful when...I know that prejudice against HIV positive and transgender people The biggest issue you are fighting for is: The inclusion and rights of HIV-positive transwomen. I think the transgender is over. Many young people today are being exposed to information about transgender and HIV-positive community, as a whole, has made great strides in the past decade in increasing its visibility and the understanding people, and I hope someday that society will be completely accepting of all people, regardless of their society has of trans people, but there is still a lack of discussion around HIV and the transwomen’s community in the HIV status or gender identity. I pray that someday the murders and violence against trans people and HIV- media and the broader society. If we want to combat this disease in all communities, there needs to be more people positive people won’t happen with the regularity that they do now and that no one will be discriminated with HIV who will speak out about their experiences and how discrimination and stigma augment the challenges against or killed for being who they are. The biggest success for me would be the elimination of the HIV inherent to being a transwoman in 21st century America. criminalization laws across our nation, and further legislation that protects the rights of the transgender community and systems that allow trans people equitable treatment under the law.

25 26 NAME: JEREMIAH JOHNSON You will feel successful when you...and others living with are a great place to find inspiration from incredible social NEW YORK, USA The biggest issue you are fighting for is...the HIV no longer have to fear coming out about our HIV movements that have taken place in NYC, as are the ACT destigmatization and decriminalization of HIV/AIDS. status. This seems so far off in so many ways, but there UP archives in the New York Public Library. (Read through Org(s) with which you advocate: UNAIDS (unaids. Since becoming infected, I’ve had many discussions is no reason that it can’t happen. There is a lot of work to Mayor Koch and Mayor Dinkins papers in the city archives, org) and Columbia University about why so many young men who have sex with men be done, however. Laws need to be changed both in the particularly the department of health files. You’ll see the (MSM) continue to contract HIV. Condom fatigue, “bug U.S. and abroad so that the rights of PLHIV are no longer impact that groups like ACT UP had on the government Why you do what you do: Since finding out I chasing,” and the psychological impact of post-exposure at risk. PLHIV need to feel empowered enough to talk to and the way in which they were affecting change. Be was HIV positive in 2008, I have become prophylaxis (PEP) and pre-exposure prophylaxis (PrEP) on as many people as possible about their experience. And prepared to get really angry though.) all too familiar with the injustices people’s willingness to practice safer sex are often cited as HIV/AIDS activists must continue to do whatever they can to faced by people living with HIV. possible reasons for the rising incidence of new infections. raise funds and raise awareness to finish the work to end Social media has changed activism by... allowing activists The stigma surrounding the In general, these explanations blame the individuals who stigma and, ultimately, to end the epidemic to write their own news and histories for the world to see, virus is debilitating, and get infected. It’s as though young MSM take the good rather than relying on media outlets to tell their stories. The it continues to unjustly messages and resources that society gives them and twist world can watch political moments and social movements destroy the lives of HIV- them into some sort of justification for at-risk behaviors. But unfold in real time, and calls to action can be instantly positive individuals. At the what about society’s ongoing failures [to educate people NAME: AMIRAH SEQUEIRA disseminated to reach millions of people globally. That time of my diagnosis, I was and link them to care]? Certainly, there is a personal WASHINGTON, DC, USA said, while social media can help boost specific types of serving as a volunteer in the responsibility to protect oneself and others from getting activism (petitions, letter/email writing campaigns, Twitter Peace Corps in Ukraine. Despite my infected, but one’s ability to do so is severely compromised Org(s) with which you advocate: Health campaigns, etc.), nothing replaces the power of thousands best efforts to finish my service, I was when an individual does not have the support they need to GAP (heathgap.org) and Student of people taking to the streets. Though I see the value of kicked out because of my HIV status and make decisions to protect their individual health. In most of Global AIDS Campaign (SGAC; social media, my organizing has shown that traditional forced to return home early. Thanks to the help America, it is still not safe to be openly gay or HIV positive. studentglobalaidscampaign.org) tactics—like calling people directly and showing up at events of the ACLU, I was able to get the Peace Corps Talking openly to others about your sexual orientation or with a clipboard to collect names and numbers—works to change their discriminatory policy and allow challenges associated with practicing safer sex can lead to Why you do what you just as well, if not better, at getting people into the streets. HIV-positive volunteers to continue their service. The consequences ranging from shame and discomfort to legal do: There is no reason outcome was certainly gratifying. However, I have found problems. It is wonderful that there are more resources why people should You will feel successful when you... when WE (the AIDS that behind each victory against stigma and discrimination now for uninfected individuals to protect themselves and suffer when the tools movement and the world) see zero new [HIV] infections and looms more of the same that we must continue to combat. for PLHIV to not transmit the virus, but how good are and resources exist to treatment provided on demand across the world. While working at the Northern Colorado AIDS Project as those resources if stigma prevents people from accessing provide them with the health a case manager and prevention specialist, I met clients them? For me, it is important for us to continue to break care they need. No one should who told me that their doctors were afraid to touch them. I down these barriers—like stigma—that are still fueling the be denied that health care based saw an individual die because they were too afraid to seek epidemic. on their gender, sexuality, race, or NAME: ROBERT SUTTLE treatment after they tested positive. I saw many individuals’ geographical location. I do the work I do LOUISIANA, USA lives in constant crisis because they didn’t have access to Traditional media that matters most to you: As far back as through SGAC because I believe the power the mental health care they need to address their own I can remember, I have been enthralled by the magic of of young people is magical. It really is! When Org(s) with which you advocate: The internalized stigma. I continue to do this work because, writing and the messages that can be conveyed through we activate youth to work together and advocate SERO Project (seroproject.org) works while many in America have begun to see HIV/AIDS as less a good novel. While other forms of media are often more effectively for what we need and want, we see results. to repeal laws criminalizing HIV. of a priority, I see [AIDS awareness] as a job that is far from accessible and provide a necessary first glimpse into an complete. It is my job to talk with as many people as I can important issue, the intimacy of a good book can transform The most powerful lesson you have learned from the work Why you do what you do: to keep the discussion of [the need to remove] stigma alive someone’s point of view on a more profound level. It’s like of ACT UP is...ALWAYS speak truth to power when people To whom much is and to remind everyone that this battle is far from over. spending hours in someone else’s mind and getting to are being marginalized. Strategic political activism and given, much is understand their reasoning. advocacy does change the world and save lives. NEVER be required. I feel I The most powerful lesson you have learned from the work afraid to challenge authority. have been given a of ACT UP is...that silence really does equal death. I have Social media has changed activism by...making it more second chance, after never been one to shout too loud or make a spectacle, but accessible to more people. However, it has, in some The biggest issue you are fighting for is...the end of AIDS. my conviction, to make seeing the tremendous bravery of early AIDS activists, even ways, lessened the personal nature of activism. There is Sound unrealistic? It’s not. [my life] count. I can’t stand to in the face of insurmountable odds, is profoundly inspiring. no doubt that the petitions circulated on Change.org have see people suffer at the hands of It is thanks to their example that I, even from the start of my power and do gather enough signatures to challenge the Leaders you love: SGAC members, students, and youth. They injustice. diagnosis, have known that I had to keep talking to people status quo. But activism is more than the click of a button. inspire me every day, and are such incredible leaders in this about my status and about my experience as a young gay Often, in order to really change the opinions that oppress movement. Their devotion, fearlessness, and willingness The most powerful lesson you have learned man living with HIV. It doesn’t matter whether I’m speaking marginalized groups, discussions must be had. We have to to work together in grassroots activism is magnificent. from the work of ACT UP is: To mobilize with one-on-one with my family and friends, voicing support for be brave enough to step away from our computer screens passion and a pure sense of “we’re in this fight for other individuals living with HIV, or standing in front of a and talk about HIV/AIDS with the people in our lives and Traditional media that matters to you most: Books! I love to our lives together.” group and shouting at the injustice that exists for PLHIV with our leaders in society. read, particularly to read history, and refuse to use/buy a (People Living with HIV). The important thing is to never kindle, e-books, etc. I also find a lot of my inspiration from The biggest issue you are fighting for is… the repeal of suffer in silence. archives—at newspapers, government, or organizational HIV-specific statutes enforced across the United States. HIV archives. The New York City Municipal Government archives is not a crime. 27 28 Traditional media that matters to you most: Music. I love As a person living with HIV, and for all PLHIV, HIV treatment gifted artists that write or sing meaningful songs that tell is the single most important thing in the world. Nothing else what it is people are going through, how they feel. I love can suppress the virus that replicates and makes billions the work of artists whose music touches our souls. of copies every day; it can only be stopped by taking your medicine on time. Social media has changed activism by… leaps and bounds. People are informed and engaged on situations and issues ARVs are completely useless unless people living with HIV Are you ever afraid doing the work you do? If so, what in activism, but the rest of the work that I do, e.g., in real time, which allows communities and networks to can afford and have easy access to them. scares you and how do you overcome your fear? Not a teaching and research, feed into activism as well. mobilize into action. single time or for a single second am I afraid of doing My focus is that any PLHIV, irrespective of who they are, must my work. My work revolves around saving people’s lives. What issue(s) do you focus on and why are these important You will feel successful when… I’m no longer registered as have access to treatment. I know ARVs are effective not only I am not killing or trying to kill people. All my efforts are to you/to the world? My area of focus is human rights, but a sex offender in the U.S. and that HIV-specific laws will no because the science has proved it, but also because I have to protect people, so why should I be afraid? Who should since it is a wide area of work, I choose longer be enforced to discriminate, stigmatize, prosecute proved it to myself, in my body, as I have been taking ARVs make me afraid? to focus on the right to health, which needs a lot of attention or convict people living with HIV/AIDS. since the last 10 years. as communities we work in don’t view health as a right. To I never do something because of funder/donor pressure me, making a change towards the right to health is key to Since 2000, Indian pharmaceutical drug companies have or due to pressure from anyone for that matter. I am clear ensuring all of the other human rights are realized. been making cheap-but-effective ARVs (generics). As a I am here to work to protect the needs of my community. NAME: LOON GANGTE result, it has been possible to get more people on treatment. Period. In the course of trying to saves the lives of my fellow What is the most powerful lesson you have learned as an DELHI, INDIA Today we have approximately 8 million people worldwide community members, I am ready to face any consequences. activist? In my experience as an activist, I have realized that whose lives are saved by ARVs—many of those people rely it is not possible to do successful activism if communities are Org(s) with which you advocate: I am on generic forms of ARVs. However, rich countries like the Is there anything else you’d like to offer? Advice, tactical not engaged. In activism, no matter the mode, communities the president of the Delhi Network of U.S. and countries in Europe are trying to use every possible tips, insight? Make them uncomfortable. Not by using need to be at the forefront of any call for activism. Positive People (dnpplus.org), India. means and ways to stop the production of generic ARVs. violence, but non-violently. As long as the people you are pushing for change are comfortable, they will not address How has social media changed activism? Social media is Why did you become an What is the most powerful lesson you have learned as the issues you raise. When they are uncomfortable they will just picking up in our part of the world. As such, social activist? I have lost too an activist? Crazy thoughts/ideas and crazy people can address you and your issues. media is relevant to more policy/high level elites in activism. many of my friends change the world. The interrelation within communities is still very low. This (99%) to HIV. People Don’t stop. If you start, don’t give up mid-way. See your has affected the magnitude of the impact of social media say it’s because of HIV, I said this when we were planning to have this big rally/ mission through to the end, until either you win or lose. If in activism. but I disagree. They are protest in March of 2010. One of our friends proposed you get lost along the way, find a new route and keep going. dying because of what they we aim for 5,000 people. We all said, “Yes,” but nobody Are you ever afraid doing the work you do? If so, what don’t know and what they can’t get. knew where the money was going to come from or scares you and how do you overcome your fear? Of course Many are dying just because they don’t whether we would have a single penny or how we would there are instances when one has to fear while involving in know that there’s any HIV treatment. Or, organize. Yet we went ahead with super crazy idea and NAME: MOSES MULUMBA activism, especially in young democracies where we work. even if they do know, it’s simply too expensive managed to execute this rally where people from all over KAMPALA, UGANDA There is a thin line between moving activism as human and they can’t afford to buy the medicine (as we India came using their own money. We were also joined rights and engaging in some political talk. Some times we have only patented drugs where I am). by a few activists from neighboring Asian countries. We Org(s) with which you advocate: I am the have had to make this line bigger, which, in a way, affects managed to pull more than 3,000 PLHIV together in the executive director of the Center for Health, our activism. Every year at the candlelight memorial on World AIDS street of Delhi to demand that the Indian government not Human Rights & Development (cehurd. Day, people remember their lost friends and families by succumb to pressure from the European Union on the org), Uganda. In addition, our culture and religious affiliations sometimes lighting a candle. I also used to take part in the memorial. India-European Union Fair Trade Agreement. We also overstep the rights of some small groups. There’s always a But I realized no matter how many candles I burned, they managed to mobilize funds, much more then we needed, Why did you become an fear of being anti-culture and nonreligious towards some were absolutely of no use to my lost friends. Instead, I without writing a single proposal to donors. Following our activist and are you full- of our work. decided to do something for my friends, and for people in rally, we heard public statements from our Prime Minister or part-time? I became my community, while they are alive. This is why I work to and Commerce Minister that they would not do anything an activist because Please finish the rest of this sentence: ”I will feel most ensure that people living with HIV/AIDS in my community that would hamper the health of India’s citizens. Yet the of my passion successful when...” I will feel most successful when there get antiretroviral treatment (ARV). I have been working full- battle is far from over and is still going on. for advocating has been a tremendous change on the right to health in my time as an AIDS activist since 2008 trying to save people’s for human community of focus. lives—or at least prevent their premature deaths— rights. Human rights from AIDS. can not be realized without activism. The What issue(s) do you focus on and why are these important only way I could send the to you and to the world? I focus on connecting people with message out was becoming HIV to ARV treatment. an activist. I work part-time 29 30 Examining the dynamic relationship between activism and art– AIDS for my community Twenty years and a continent because, quite frankly, we away, the performance artists ART AND creativity in action–through history informs our understanding needed bodies to show up at Pussy Riot chose a building the demonstrations.” at the center of Red Square, of how we can bolster contemporary social movements. a rooftop stage features the ACTIVISM BY PATRICIA FINNERAN ACT UP’s media-ready posters, turrets of the Kremlin as a news photographers and backdrop. videographers would capture the real-life action while those As they perform a punk prayer How to Survive a Plague The artists behind ACT down, represented both gay posters, photographs and video in protest of Putin’s repressive tells the story of a successful UP appropriated a simple pride and combined with conveyed their message to regime, they carry a flag that movement for social change geometric symbol, the triangle, the words Silence = Death, mainstream media audiences. combines the fist of protest with whose leaders used creativity to create a poster that captured an exhortation to speak out the symbol of femininity. and art to advance their cause. the essence of their struggle. about AIDS. ACT UP’s creative activism Contemporary activists who extended beyond the visual Stephen Duncombe, in his capture the public imagination The placards bearing the slogan Gagliostro, now a filmmaker realm to the protests themselves, book, Dream: Politics in the Age such as Pussy Riot in Russia and “Silence=Death” with the bold living in Paris, wrote about the which were often envisioned of Fantasy, urges progressive the Occupy Movement have pink triangle, created by artists source of the inspiration upon as a kind of performance leaders to use a creative adopted similar strategies. including Avtttram Finkelstein the release of How to Survive a art. They were staged as live, approach to protesting that Each new movement looks to and Vincent Gagliostro, draw Plague in September 2012: participatory theatrical events will truly engage participants, the past for symbols and images power from the embedded complete with costumes and directly reflect the cause, and that can be appropriated and historical reference, while the “When I would leave an ACT UP roles. People staged die-ins, create a public spectacle. As endowed with new meaning to graphic simplicity which could meeting charged with the task lying in the streets to highlight Founder of the Center for Artistic inspire their contemporaries. be reproduced on posters met of creating graphics for the next the roles of the dead and dying Activism, he practices what he the needs of the moment when planned demonstration, my to keep people alive. preaches. He points to the An iconic 19th century French flyers rather than Facebook first thought was how do I keep tactics of ‘Reclaim the Streets’ painting shows the figure of were the organizing tools of the crowd shouting and yelling? Performance art incorporates with whom he worked. They Liberty leading a revolution, the day. They were my inspiration. I had the space in which it takes protested Mayor Rudy Giuliani’s a t-shirt features the fist of to inspire them. I always made place. As evidenced in the by clean-up New York campaign the black power movement, The pink triangle refers to my graphics first for them, for now famous image of Peter which privatized public space a photo of an ACT UP protest the patches sewn onto the us. Yes, the graphics needed to Staley standing on the roof of (including community gardens) captures the movement, a Pussy uniforms of gay men in Nazi articulate and disseminate our the FDA to hang a Silence = by building new gardens in Riot banner shows a somewhat concentration camps. The pink knowledge about a particular Death banner, with hundreds highly trafficked public spaces. playful purple fist. The raised patches were slightly larger issue to the general public, of cheering protestors standing Whether it is a pop-up public fist is a universal expression of than other identifiers, and the government officials and/ below, ACT UP took their protests garden or a die-in, well-staged street protest adopted and re- bearers singled out for abuse. or drug companies. But as directly to the FDA, the NIH, collective performance art interpreted by revolutionaries Gay artists of the late ‘70s and important as it was for the even the White House. (The captures media attention and the world over. The creative ‘80s reinterpreted this symbol graphics to communicate giant condom placed on the forces the public to take notice. representation of the human of exclusion and degradation a message, it was equally home of Senator Jesse Helms hand evolves to serve the needs into one of defiance. As AIDS important that they speak to is perhaps the apotheosis of While we need art, as Gagliostro of the media, the movement affected the gay community and galvanize the movement this approach.) so eloquently stated, art to and the moment. in the 1980s the triangle, itself. I needed my work to “visually articulate the heart often flipped up rather than politicize the issue of HIV/

31 32 ART INSPIRES, STORY MATTERS and soul of a movement”, we network of cable news. to see the film as a kind of Church’s for its response to of Mubarek, and through the creative spirit that is realized in also need to make sense of it. passionate tutorial on activism. HIV/AIDS famously staging end of 2012. The Square uses images, words, and events that For that, we need storytelling. Director David France covered Frank Bruni wrote in The New an action in St. Patrick’s street art, images and phrases capture the public imagination. HIV/AIDS in New York as a York Times that the film serves Cathedral the most famous painted as a motif throughout We live in a time in which writer; he wrote some of the as “a model for the here and church in the US. Pussy Riot the film. The street art provides The social issue documentary audiovisual media pervades first major stories that were now of social change.” Dana staged a performance in the a kind of visual poetry that filmmaker, whether or not our culture, the documentary published on the mysterious Stevens of Slate suggests, “if Cathedral of Christ the Savior separates the phases of the their film depicts activist art, film is the perfect media to and devastating disease. By its essence could be bottled in Moscow to protest the close revolution and the protest; uses creativity and a narrative capture the narrative of a mining the most dramatic [the film] could serve as a ties between the Church and it is activist art in the service to take the viewer deeper in movement. And the best social and compelling aspects of tonic for demoralized political Putin’s political regime. The of story. to the story of change. The justice documentaries, such the story of HIV/AIDS and the organizers, a bracing reminder documentary Pussy Riot: A best filmmakers introduce us as How to Survive a Plague, activism that forced action that that change is possible when Punk Prayer premiered at the to characters we relate to and combine journalistic integrity ultimately made the plague a group of committed people 2013 Sundance Film Festival cheer for. How to Survive a with the artistry filmmaking. survivable, France transcends come together to fight injustice, a year after How to Survive a “Artists have the power to Plague takes us through ten his own nearly three decades indifference, and prejudice.” Plague. The group’s message years of ACT UP, from tragic loss “Journalism is the first rough of reportage. Writing in The Playlist, Kate goes far beyond Putin, they are visually articulate the heart to bittersweet victory. We cry at draft of history,” so said Walsh said of the film, “[it] 21st century feminists and they and soul of a movement.” the passing of Bob Rafsky; and Washington Post publisher Contemporaneous to France’s should be shown as Social support LGBT rights, gender we cheer for Peter Staley as he Phil Graham, a stalwart of writing about AIDS for outlets Justice 101. France’s film is equity and the right to free -- Vincent Gagliostro, artist and activist delivers his friend Vito Russo’s traditional print journalism. including the New York Times, the definitive ACT UP New York expression as much as they compelling words at the 1990 Documentary is the those involved in the late ‘80s documentation that audiences protest the current regime. AIDS Conference calling for predominant historical record. and early ‘90s captured their in our Occupied world need an end to the discrimination The printed word––books!–– activities on newly affordable to see.” Any conversation on Like David France’s of people with HIV/AIDS. A certainly holds an important videotape. Public actions, contemporary activism must documentary, these films banner can’t deliver that place, but the immediacy protests, even weekly planning Flash forward to 2011 and a include the Arab Spring, profile activists, artists and same emotional punch. Since and accessibility of film and meetings, were captured for small group of protestors using which played out live on the revolutionaries and provide screen images of various video extends its reach and posterity. But it took the art and highly creative public expression Internet and television. The audiences with a narrative sizes dominate the media power to attract and engage craft of filmmaking to render to protest a repressive regime documentary, The Square (Al that extends beyond the landscape, the documentary broad audiences. nearly 700 hours of material and a political leadership that Midan), created by Egyptian- iconic imagery. Each of those film may be our most powerful into a compelling narrative that is blocking reform. One can see American director Jehane films is art that advances tool in the art of activism and Journalists reportage and put their work in to a context the legacy of ACT UP’s work, Noujaim and a team of contemporary activism. creative change. analysis of unfolding events that gives it new meeting. and harken in the work of Pussy people who are living the lay the groundwork for the Riot. Theatrical, colorful, and revolution, captures the story Art can help us imagine a Patricia Finneran produces insight and perspective that Curators, critics and cultural surprising, they are activists of the revolution from inside world beyond injustice and and advises on documentary come with time. The nature of leaders have designated How first, and use performance art the movement. It focuses on inspire us to envision change. film and related engagement the documentary form requires to Survive a Plague a worthy as a means to an end. the events taking place in an Activists have goals and plans, campaigns. She led the more time than a news piece, a work of film art. In fact, many around Cairo’s Tahrir Square tenacity and courage. The campaign for How to Survive published photo, or a spot on have called upon audiences ACT UP protested the Catholic starting with the resignation most successful also possess a a Plague.

33 34 CAMPAIGN SO FAR—OUR IMPACT CAMPAIGN PARTNERS WHO HAVE AWARDS AND The How to Survive a Plague Engagement Campaign HOSTED SCREENINGS AND NOMINATIONS FOR has been working with dozens of organizations in the EVENTS INCLUDE: HOW TO SURVIVE A PLAGUE U.S. and internationally to engage audiences and use the film to provide a model for advocacy and social change and to energize the work of organizations ACT V: The End of AIDS supporting HIV/AIDS awareness, treatment, and ACADEMY AWARD© research. Post-screening discussions and ‘meet-ups’ ACT UP (New York, Philadelphia, NOMINEE have connected thousands of audience members Boston, San Francisco) with leaders in health care justice. AIDS Community Research Initiative GRASSROOTS PARTNER HIGHLIGHTS of America (ACRIA) GOTHAM AWARD AIDS Foundation Chicago / HIV The increase in the number of Student Prevention Justice Alliance BEST DOCUMENTARY Global AIDS Campaign (SGAC) chapters, fueled by their partnership AIDS UNITED 30% with the campaign. Plus, SGAC receives proceeds from the sale of the soundtrack. amfAR IDA EMERGING

The number of screenings hosted by RESULTS, American Medical Students DOCUMENTARY 35 which works with thousands of citizens to fight Association (AMSA) FILMMAKER AWARD poverty and promote social justice. Black AIDS Institute 140 The number of AIDS service and social NEW YORK justice organizations around the world that Broadway Cares/Equity Fights AIDS 140 will receive a free educational DVD package FILM CRITICS CIRCLE of the film. GLAAD BEST FIRST FEATURE WORLD AIDS DAY 2012 GMHC The number of screenings on college DGA campuses and hosted by partners leading Gay, Lesbian and Straight Education BEST DIRECTOR 75 up to World AIDS Day 2012. Events Network (GLSEN) included: a screening at MOMA which NOMINEE included Larry Kramer; a ‘Hangout’ at Health GAP Google’s NY HQ with David France, Peter Staley, artist Angelique Kidjo and Human Rights Campaign contemporary AIDS activists; a screening INDEPENDENT at the State Dept. with Dr. Anthony Fauci, Partners In Health (PIH) SPIRIT AWARD plus a Twitter campaign calling for funding NOMINEE for AIDS treatment access and research. Planned Parenthood INFLUENCER SCREENINGS RESULTS GLAAD Student Global AIDS Campaign International AIDS Conference / AIDS 2012, (SGAC) AWARD Ford Foundation, Bill & Melinda Gates Foundation, Open Society Foundations, U.S. Department of State. Treatment Action Group (TAG)

Global Health Corps is using the film in orientation Universities Allied for Essential for public health workers. Medicines (UAEM)

The U.S. Department of State is using the film to UNAIDS engage international audiences on LGBTQ rights and the role of activism in a democracy. 35 36 TF: Some of my peers understood and agreed arrested, I was actually coming down to the with what I was doing; however, I got significant lobby and the police were bringing Peter through resistance from several others. I tried hard to with handcuffs on. I had already developed a convince the recalcitrant ones, but when I could relationship of respect with Peter and as he passed not convince them, I ordered them to do so (if me, he gave me a big smile and said: “Hi Tony, they reported to me), and if they still refused, we did it and I am the first one to get arrested.” then the consequences to them became I felt like hugging him. The police looked at more dire. me strangely.

RH: What fears did you/your peers have about RH: Did the activists respond as you had the decision to meet with activists? Were those hoped/anticipated in meetings with senior fears realized? government officials? TF: I never really had any serious fears about “I had a reaction of the decision to meet with activists because I was convinced that much of what they were pushing for was the correct thing to do. Some ‘Wow! They really know of my peers were concerned that meeting with the activists would significantly disrupt how to get our attention.’ the scientific process. I disagreed with this Dr. Anthony Fauci, Director of the concern and, in fact, I was correct since, if I actually felt a feeling of anything, it enhanced the scientific process. National Institute of Allergy and There was the issue that some members of respect and admiration the scientific community and even government IN THE officials would be upset with me personally for Infectious Diseases at the National “opening the door” to a process that might for their passion and Institutes of Health, reflects on his have negative consequences. No one likes to have colleagues upset with them; however, commitment.” decision to invite AIDS activists to since I was convinced that there would not be HALLS OF negative consequences, I was not bothered too TF: The activists responded even better than I join decision makers at the table — much by people being upset with me. I knew expected. They came armed with facts, legitimate that at the end of the day, they would realize concerns, and reasonable suggestions. Sometimes, and on the power of having patients that this was the correct thing to do. they were off the mark; however, they were right on target more often than they were off. As time went POWER participate in the development of What were you thinking when you looked by, they became more knowledgeable and even RH: out your office window and saw activists more effective. BY REGAN HOFMANN health care solutions. demonstrating on the lawns of the NIH? RH: Was it the right decision to let them in? TF: I had a reaction of “Wow! They really Does having people directly impacted by an know how to get our attention.” I actually felt issue at the table when decisions about that Regan Hofmann: You are well known for their way gingerly towards mutual trust and a feeling of respect and admiration for their issue are being made help officials make spearheading the decision to invite AIDS activists respect. It became clear to me that what they passion and commitment. I got upset when better decisions? in to meet with members of the National Institutes were saying, asking for, and even demanding I saw that the police were arresting some of of Health. What led you to encourage meetings made perfect sense, and I found myself agreeing them, even though the police really did not TF: It was unequivocally the right decision to between activists and government officials? with them very much more than disagreeing with have much choice. That is why I communicated let them in. I believe that better decisions are them. When that happened, the only option as with the police and told them, if possible, not to made when people who are directly impacted by Tony Fauci: For some time I had been reading far as I was concerned was to fully engage them arrest people and asked that they bring a small an issue are at the table. However, their impact and listening carefully to what the activists were and push for the rest of the government to do so. group of the activists up to my office to start a differs from situation to situation. It never hurts to saying. I began paying much more attention to dialogue. In the scene from How to Survive have them there in any case; however, the degree the content of what they were saying than to the RH: Did you encounter resistance among your a Plague where Peter Staley was being taken to which they can contribute will vary depending confrontational techniques that they were using. professional peers when you suggested the by the police off the small canopy in front of on the issue being discussed and the decisions In addition, I began to develop relationships with activists be given audience at the NIH? Building 31 (my building) on his way to getting being made. With the AIDS activists, it was critical some of them; these relationships were working

37 38 INSIDE-OUTSIDE ADVOCACY negotiators, experts and educators. to have them there in the discussions about the design of clinical trials and the impact of certain regulatory How to create social change using If the “outside” group are activists, the “inside” group are advocates. The restrictions on access to drugs in clinical trials since their pressure on both sides of an issue. input was extremely helpful to the proper implementation members of the “inside” group are often less overtly strident than those of what we were doing. An effective formula to advance social in the “outside” group; but it’s really change: activists protest outside the just a matter of tone of expression— RH: Has there been a long-term impact of giving activists halls of power to create pressure, while ultimately, they are doing the same a seat at the table, a voice in discussion? If so, was it a colleagues advocate with the decision things in different ways. The most positive or negative one? makers on the inside to advance their successful advocacy involves both cause directly. TF: The long-term impact has clearly been positive since types of groups working with equal force, but wielding different types of the process of clinical trial design and dealing with real In shorthand, this means that you tools. Great communication between world problems associated with a disease (such as HIV/ need people “outside” a system or the groups and a willingness to AIDS) really needs input from those involved. organization, or just the office of a work in concert and to propose person you are trying to influence. the same solutions heightens the RH: What advice would you give to young activists who These people get the attention of efficacy of both types of groups. want to reach someone at your level? the target and leverage the media to highlight that there’s an issue or When a “target” (a person, institution, TF: Prepare yourself by trying as best as possible to problem that needs resolving. And or company) is ready to take familiarize yourself with the scientific and policy facts and you need people “inside” those same action, they often like to meet with issues. Having done this, start off softly by indicating that arenas to educate, deliver your “asks,” representatives from the “inside” you want to engage in constructive discussions. Give the and negotiate with your target for ways group—a group that may also include officials a chance to digest that you are acting in good to resolve the issue or problem. faith. If you get no response or if you are ignored, then some of the members of the “outside” group—in order to clearly understand gradually step up the pressure, including by going to the Most successful social movements the issues and needs of the movement press with your issues. Make sure that you can defend have components of both. Think of and to discuss ways of moving your position with facts. It is very difficult for officials to the different roles played by the SNCC towards change or resolution. When walk away from facts. and the NAACP for example. the “inside” group includes some from the “outside” group, it maintains RH: Can you mention three things activists should NOT The “outside” group conducts protests, solidarity between the two. And having do if they wish to be granted access to the halls of power? rallies, and demonstrations. They an “outside” member or two with the picket and march and participate in “inside” group can keep the heat on a TF: 1) Do not assume that everyone in the halls of civil disobedience to get their issue in target, while showing that the “outside” power is against you, even though it may seem that way the media—and to make their targets group is willing to cooperate as long as sometimes; 2) do not try to gain access until you are fully pay attention and feel pressure to their needs are sufficiently addressed. aware of the issues and have tried to educate yourself. If respond. This group uses their bodies, “Targets” who are willing to meet you come in ill-prepared, you will lose credibility and you voices, art, collective power (and with members of both groups (such might make it much more difficult for yourself to engage often, palpable and visible anger and as Dr. Fauci did) can gain the respect in the future; and 3) do not be confrontational unless you discontent) to stir action. have exhausted a more measured approach. of a wider community. When all three groups come together, it offers the best The “inside” group stands at the chance for the smoothest resolution RH: What lessons can all activists glean from the work of ready to push the asks of those who of conflict. early AIDS activists that may still be relevant today? conduct the protests, rallies, and demonstrations. This group is typically As you think about your own role in TF: Be persistent, be consistent, and try to know your comprised of experts armed with social change, consider which type subject at least as well as the people that you are trying facts, details, and data to support the of group suits your personality best. to deal with. arguments of the outside group. They And if you are leading social change, are the ones who negotiate and are ensure you have both types of groups - Regan Hofmann often trained in policy, law, and any assembled and that your “target” areas of specific expertise relevant to a knows both exist. given social movement. They are often people who have worked inside the - Regan Hofmann systems and institutions or industries with which they are negotiating. This 39 group is comprised of diplomats and 40 public policy aimed at protecting the AMFAR, THE FOUNDATION BLACK AIDS INSTITUTE (BAI) Top Organizations Leading the Charge rights and lives of people living with FOR AIDS RESEARCH blackaids.org and at risk for contracting the virus. amfar.org BAI aims to correct the for HIV Health and Health Care Justice The AIDS Foundation of Chicago’s This fundraising, research and disproportionate rate at which programs, are lead partners in the advocacy powerhouse invests African Americans contract, and die Learn | Fight | Love Alliance. directly in finding a cure for HIV/ from, HIV/AIDS. Under the dynamic Activism takes many forms. It can be as simple as signing a AIDS. To date, amfAR has invested leadership of Phil Wilson, their petition, registering for e-news, liking an organization or cause AIDS LAW PROJECT more than $340 million to fund motto—“Our People, Our Problem, on Facebook, following and promoting a group’s work on OF PENNSYLVANIA 2,000+ cutting-edge research Our Solution”—speaks to the self- aidslawpa.org teams worldwide. Known for their empowerment and self-preservation Twitter or donating funds. Or, it can involve direct engagement This nonprofit public-interest law firm A-list celeb-studded fundraisers, that serve as the cornerstones of from volunteering to fundraising, from participating in a based in Philadelphia, Pennsylvania they have the freedom and flexibility their work. In conjunction with The RESOURCE demonstration to political lobbying, from advocacy to working provides free legal assistance to to respond quickly to the most Kaiser Family Foundation, BAI has for an organization, cause or movement. The first step is people with HIV/AIDS and those promising research. Their “ARCHE” created a national public awareness identifying which organization fits best with your goals, talents affected by the pandemic. They grantees work in collaboration with campaign called “Greater Than and resources. The following is a sampling of organizations are the only public-interest law others and their new “Generation AIDS” (greaterthan.org). BAI is a from around the world with histories of success fighting for the firm in the U.S. dedicated to HIV Cure” initiative is cultivating a new lead partner in the Learn | Fight | GUIDE rights, health and safety of people living with, and affected by, and AIDS. They educate the public crop of leaders to help herald in the Love Alliance. HIV/AIDS—as well as related conditions. about AIDS-related issues, train cure for AIDS. case management professionals to CENTER FOR HEALTH, become better advocates for their ANDREY RYLKOV HUMAN RIGHTS & clients with the virus and work on FOUNDATION FOR HEALTH DEVELOPMENT (CEHURD) AIDS COMMUNITY is a must-read for any activist. The AID FOR AIDS local, state and national levels to AND SOCIAL JUSTICE (ARF) cehurd.org RESEARCH INITIATIVE story of how ACT UP has helped INTERNATIONAL achieve fair laws and policies. They en.rylkov-fond.org This indigenous, non-profit, research OF AMERICA (ACRIA) saved many lives is documented aidforaids.org make home and hospital visits for This Moscow-based, grassroots and advocacy organization is acria.org in How to Survive a Plague. Aid for AIDS (AFA) operates the clients too sick to travel. They cover organization was founded in 2009 pioneering the enforcement of ACRIA focuses on educating patients world’s largest medicine recycling a span of issues from HIV-related and fights to promote and develop human rights (such as sexual and and health care providers about ACT V: THE END OF AIDS program, redistributing unused, discrimination to confidentiality humane drug policy based on reproductive health rights, trade treatment options and guides actfive.org unexpired medication to those of HIV-related information, HIV tolerance, protection of health, and health, and the medical ethics them on how best to navigate the “ACT V” refers to the fifth, and final, without affordable treatment access. testing protocols to public/private dignity and human rights. The affecting vulnerable and less- complexities of health care. Founded act in Shakespearean drama. It’s Its innovative program, “¿Cuánto benefits, housing to wills, living wills foundation uses four key strategies advantaged populations such as: in 1991 as the Community Research when resolution and redemption Sabes de VIH y Sida?” (How Much and powers of attorney, financial/ in its work, namely: advocacy, women, children, orphans, sexual Initiative on AIDS (ACRIA) by a occur. The relatively new, global Do You Know About HIV and AIDS?), consumer debt to immigration. “watchdogging,” provision of minorities, people living with HIV/ group of physicians, activists and AIDS organization is named thus provides peer-to-peer HIV-prevention services and capacity building. It AIDS, people with disabilities, people living with the virus who as its goal is to shepherd in the education and serves more than AIDS POLICY PROJECT advocates for the introduction of refugee populations, internally- were frustrated by the slow pace of end of the pandemic. It’s run by 100,000 teenagers in Latin America aidspolicyproject.org evidence-based and internationally displaced people and government and academic AIDS Leigh Blake (of Red Hot, Artists and the Caribbean annually. AFA This community of advocates, recognized opioid substitution victims of violence, torture, disaster research, the organization has Against AIDS, Keep A Child Alive also serves immigrant communities political strategists, community treatment and for the dissemination and conflict) as well as the legal right since helped develop medications and Arms Around the Child) and in New York with HIV case organizers, health professionals of clean needles and syringes. to health in Eastern Africa. It works that allow people living with HIV global AIDS activist Paul Zeitz. management, outreach and testing. and people living with HIV/AIDS to ensure that laws and policies are to live longer, healthier lives. are working together to support the AVAC used as the principle tools for the AIDS.GOV AIDS FOUNDATION development of a cure for HIV. avac.org promotion and protection of health AIDS COALITION TO aids.gov OF CHICAGO (AFC) This non-profit founded in 1995 and human rights. Their programs UNLEASH POWER (ACT UP) AIDS.gov is the U.S. government’s aidschicago.org AIDS UNITED uses education, policy analysis, focus on human rights advocacy, aidsunited.org actupny.org | actupphilly.org | comprehensive web site for Their tagline is “A Source of Hope. advocacy and a network of global community empowerment and AIDS United’s mission is to end the actup-sf.org | actupboston.org information and resources on A Force for Change.” They are collaborations to accelerate the research and documentation. AIDS epidemic in the United States. ACT UP played an integral role HIV/AIDS; it offers the latest on both. Their mission is to lead the ethical development and global They pursue that goal through in accelerating the development, U.S. policy, program and funding fight against HIV/AIDS and improve delivery of AIDS vaccines, male CENTER FOR national, regional and local policy/ approval and dissemination of information. It offers a user-friendly the lives of people affected by the circumcision, microbicides, pre- ARTISTIC ACTIVISM life-sustaining drugs for people advocacy work, strategic grant AIDS service provider tool at: www. pandemic. They offer prevention, exposure prophylaxis (“PrEP”) and artisticactivism.org with HIV/AIDS. Known for their locator.aids.gov. The site notes testing, care, housing, case making and capacity building. AIDS other emerging HIV prevention The Center is a home for artists, often shocking, and effective, that while most states offer both management, food assistance and United works to ensure all living options as part of a comprehensive activists and scholars to explore, demonstrations (disrupting Mass at anonymous and confidential testing, grants. They fundraise through with the virus can access the care response to the pandemic. discuss, analyze and strengthen St. Patrick’s Cathedral, human ashes some do not. For U.S. based events and engage in advocacy in and treatment they need to survive. connections between social thrown onto the White House lawn), patients interested in obtaining their hometown and on Capitol Hill. activism and artistic practice. Their the members of ACT UP continue anonymous testing it suggests Founded in 1985 by community goal is to make more creative to unite in anger engaging in direct contacting local health departments activists and physicians, AFC is a activists and more effective artists. action to end the AIDS pandemic. or calling 1-800-CDC-INFO local and national leader in the As they say, “We aim to win.” Their “Civil Disobedience Manual” (1-800-232-04635) fight for effective, compassionate 41 42 CENTER FOR HEALTH ELIZABETH GLASER GREATER THAN AIDS HOUSING WORKS INTERNATIONAL PARTNERS IN HEALTH AND GENDER EQUALITY PEDIATRIC AIDS greaterthan.org housingworks.org TREATMENT PREPAREDNESS pih.org (CHANGE) FOUNDATION (EGPAF) The GreaterThan.org website offers New Yorkers know and love their COALITION (ITPC) The mission of Partners In Health genderhealth.org pedaids.org one of the most comprehensive SoHo bookstore, and trendy thrift itpcglobal.org (PIH) is to provide what it calls “a CHANGE has advocated for the The non-profit foundation is sets of resources for individuals shops. Co-founder and CEO This global network of community preferential option for the poor” sexual and reproductive health and dedicated to preventing pediatric HIV to get informed and take action Charles King was an early ACT UP organizations, local NGO’s, in health care, advancing and rights of women and girls worldwide infection and eliminating pediatric on HIV/AIDS at a variety of levels. leader. Their innovative approach researchers and activists is dedicated acting on the belief that health care since 1994. The U.S.-based non- AIDS through research, advocacy Greater Than AIDS is a long-term, to raising money to fight the dual to securing access to effective, is a human right. PIH began its governmental organization has as and prevention, care and treatment multi-platform educational media crisis of AIDS and homelessness affordable and quality treatment work in Haiti and has delivered its mission ensuring that the U.S. programs. Founded in 1988, EGPAF project created by the Kaiser Family was helping thousands of people for all people living with HIV. They high-quality medical care and foreign policies and programs currently works in 15 countries Foundation in partnership with long before the term “social push for global scale-up of access social support to the poorest of protect women’s and girls’ sexual around the world. Their global staff The Black AIDS Institute. Leading entrepreneur” became au courant. to care; since research shows that the poor living in rural Haiti for 25 and reproductive health within of more than 1,000 people (87% supporters include the U.S. Center NYC-based Housing Works is also antiretroviral HIV treatment, taken years. Its groundbreaking work–– a human rights framework. of whom work directly in the field) for Disease Control, Elton John a major force in the advocacy arena properly, can lower the risk of providing free comprehensive HIV/ CHANGE believes that every makes EGPAF a global leader in the AIDS Foundation, Ford Foundation in Washington, DC, and has been transmission by up to 96%, ITPC’s AIDS treatment for the poor––is a person has the right to basic push for an AIDS-free generation. and Walgreens (a major private on the ground in Haiti since 2008. work protects both individual—and model for public health programs information, technologies and sector partner). Greater Than AIDS’ public—health. ITPC’s David Barr is worldwide. PIH now has partnership services needed to enjoy a healthy EQUAL EDUCATION “Pride” initiative offers targeted INTERNATIONAL AIDS featured in How to Survive a Plague. programs in numerous countries, and safe sexual life free from equaleducation.org.za media content and outreach to the VACCINE INITIATIVE (IAVI) notably Rwanda which has been coercion and preventable illness. This is a movement of learners, LGBTQ Community in the U.S. Iavi.org MÉDICINS SANS cited as an historic success story parents, teachers and community This global not-for-profit FRONTIÈRES (A.K.A. by the WHO, The New York THE CENTER FOR HIV members working for quality and HEALTH GAP organization focuses on the DOCTORS WITHOUT Times, The Atlantic and others. LAW AND POLICY equality in South African education healthgap.org development of safe, effective, BORDERS) The PIH’s Take Action network hivlawandpolicy.org through analysis and activism. The “GAP” stands for Global accessible, preventive HIV vaccines msf.org | offers ways to get involved in the The Center for HIV Law and Policy Unequal educational opportunities Access Project; they’re dedicated to for use throughout the world. doctorswithoutborders.org movement for health care justice. (CHLP) is a U.S.-based legal and still remain amongst the greatest ensuring affordable, life-sustaining Founded in 1996, IAVI works with Founded in Paris in 1971, MSF policy resource and strategy center obstacles to equality, dignity and access to care for all people with partners in 25 countries to research, is a worldwide, self-governing PATHFINDER for people with HIV and their freedom in today’s South Africa. HIV/AIDS because they believe design and develop AIDS vaccine movement of 23 associations. The INTERNATIONAL advocates. CHLP works to reduce that health care is a human right. candidates. The organization also international, independent, medical pathfind.org the impact of HIV on vulnerable FASTERCURES They see universal access as key to conducts policy analysis and serves humanitarian organization delivers Their mission is to ensure that people and marginalized communities in fastercures.org ending the pandemic globally and as an advocate for the AIDS vaccine emergency aid to people affected everywhere have the right and the U.S. and to secure the human The D.C.-based think tank works campaign against short-sighted field. It supports a comprehensive by armed conflict, epidemics, opportunity to live a healthy sexual rights of people affected by HIV. to accelerate medical solutions to policies that deny treatment to approach to addressing HIV and natural disasters and exclusion from and reproductive life. They work in The Center works with experts the world’s most deadly diseases. millions and fuel the spread of the AIDS which balances the expansion healthcare. MSF offers assistance to more than 20 countries to provide and community members from They educate stakeholders about virus. Health GAP is a lead partner and strengthening of existing people based on need, irrespective women, men and adolescents a local direct service providers to the barriers to breakthroughs, in the Learn | Fight | Love Alliance. HIV prevention and treatment of race, religion, gender or political range of quality health services, identify, create and share high- and help ensure research funding programs with targeted investments affiliation. Their actions are guided from contraception and maternal quality legal and policy resources is applied for maximum impact. HIV PREVENTION JUSTICE in the design and development of by medical ethics and the principles care to HIV prevention and AIDS and advocacy strategies. Their publication Back to Basics: ALLIANCE (HIV PJA) new tools to prevent HIV. IAVI is of independence and impartiality. care and treatment. They strive to HIV Advocacy as a Model for preventionjustice.org dedicated to ensuring that a future strengthen access to family planning, DELHI NETWORK OF Catalyzing Change (fastercures.org/ Their slogan—“HIV/AIDS is not AIDS vaccine will be available and ONE ensure availability of safe abortion POSITIVE PEOPLE (DNP+) Publications/HIVAIDS-Change.php) just a disease, it’s proof positive of accessible to all who need it. one.org services while improving the rights dnpplus.org offers a terrific analysis of how a social injustice”—says it all. They A global, grassroots group with and lives of the people they serve. Registered in 2000 as a trust, DNP+ diagnosis of HIV went from a death maintain that fighting against AIDS INTERNATIONAL HIV/ more than 3 million members, provides a platform to help empower sentence to a treatable disease. is fighting for human rights and AIDS ALLIANCE ONE fights extreme poverty and PLANNED PARENTHOOD patients to make informed treatment social justice, particularly when it aidsalliance.org preventable diseases, particularly plannedparenthood.org decisions at every stage of the HIV GMHC comes to marginalized communities. This innovative global partnership in Africa. ONE is known for raising Planned Parenthood provides high trajectory. They offer support, service gmhc.org Working to herald in a paradigm of 41 nationally based, independent public awareness and pressuring quality, affordable reproductive and delivery and advocate for human While based in New York, GMHC shift in HIV prevention, they insist civil society organizations and political leaders to support smart sexual health care and prevention rights. DNP+ established Delhi has national influence and reach. that society and our leaders country offices, seven technical and effective policies and programs education to millions of women, Mahlia Samiti (DMS), a women’s Founded by gay men in 1981, their address social determinants (such support hubs and an international (meaning, those that actually men and young people across the forum focused on improving diverse constituents and beneficiaries as poverty) that fuel viral spread. secretariat work together to save lives). A non-partisan org, U.S. and in 17 countries in Africa, the quality of life in women and now include people of all ages, HIV PJA is a lead partner in the mobilize communities against HIV/ ONE was co-founded by Bono Asia, and Latin America. Planned children living with HIV in Delhi gender and sexual orientations. Learn | Fight | Love Alliance. AIDS. They support community and others focused on improving Parenthood is among the world’s thereby reducing vulnerabilities One of the first, and still one of action on HIV, health and the health and well-being of the largest providers of confidential HIV of women, girls and children. the best, providers of HIV/AIDS human rights to end AIDS. world’s most disenfranchised. tests, screening over 4 million people prevention, care and advocacy, a year for sexually transmitted the mighty GMHC sets a platinum standard for fighting HIV/AIDS. 43 44 diseases. The Planned Parenthood grassroots activists with strategic SEX WORKER EDUCATION they need to stay safe from HIV/ TREATMENT ACTION around academic patenting and Action Network is a powerful grass-tops efforts, they help leverage AND ADVOCACY AIDS. They back innovative GROUP (TAG) licensing, ensures that university resource for those interested in millions of dollars for programs and TASKFORCE (SWEAT) programs on the ground, by treatmentactiongroup.org medical research meets the needs learning about and supporting the improved policies that give low- sweat.org/za funding the creative and ambitious The independent AIDS research of people worldwide and empowers organization’s regional, national income people the health, education, This organization focuses on the young leaders that run them. and policy think tank comprised of students to respond to the access and global advocacy work. and opportunity they need to thrive. decriminalization of sex work. science-based treatment activists and innovation crisis. Comprised Together with other civil society STUDENT GLOBAL AIDS fights for better treatment, education of committed students from all over PSI SAVE THE CHILDREN organizations, SWEAT advocates CAMPAIGN (SGAC) and access to care for people with the world, supporters of UAEM savethechildren.org psi.org for the removal of all laws that studentglobalaidscampaign.org HIV. They also focus on accelerating fight for social justice and health The mission of PSI is to measurably The independent organization These next-gen leaders are working prosecute sex workers. Unlike vital research and effective equity, for millions of people do not improve the health of poor and creating lasting change in the lives of legalization, this approach at college campuses across the community engagement with have access to essential medicines. vulnerable people in the developing children in need in the United States involves industry regulation rather country (85 and counting). Since research and policy institutions in world, principally through social and around the world is known for than government oversight, and they came of age in a global pursuit of vaccines and a cure. TAG’s marketing of family planning their commitment to accountability, acknowledges human rights for all. era, they are not only fighting for indomitable Mark Harrington is WOMEN’S LEGAL CENTRE wlce.co.za and health products and services, innovation and collaboration. They SWEAT’s multi-initiative approach prevention and treatment access, featured in How to Survive a Plague. The non-profit, independently and health communications. empower communities, children includes media engagement, policy but also the elimination of debt in Social marketing engages private and families to help themselves. debate, and coalition building. the developing world and reform of URBAN JUSTICE CENTER funded law centre was started sector resources and uses private Working with other organizations, It has compiled numerous issue, global trade rules. Their media-savvy urbanjustice.org by a group of lawyers who seek sector techniques to encourage governments, nonprofits, and position, and discussion papers strategic campaigns are aimed at For 29 years, the Urban Justice to achieve equality for women in healthy behavior and make a variety of local partners, they on sex work, current local and decision-makers and raising public Center has served New York City’s South Africa. As access to justice markets work for the poor. maintain independence and work national laws, decriminalization, awareness. SGAC is a lead partner most vulnerable residents through a is largely inaccessible to poor without political agenda or religious and sex work conditions. in the Learn | Fight | Love Alliance. combination of direct legal service, women, particularly black women, QUEEROCRACY orientation. When disaster strikes systemic advocacy, community the WLC plays an important role queerocracy.org around the world, Save the Children SEX WORKERS PROJECT TREATMENT ACTION education and political organizing. in litigating in their interest and Queerocracy is a New York City- saves lives with food, medical care sexworkersproject.org CAMPAIGN (TAC) They assist clients on numerous providing them with access to based organization working to and education and remains to help The Sex Workers Project provides tac.org/za levels, from one-on-one legal free legal advice. The Centre build a new generation of LGBTQ communities rebuild through long- client-centered legal and social Founded in 1998 in Cape Town, advice in soup kitchens, to helping leaders to challenge institutional term recovery programs. services to individuals who TAC advocates for a unified, quality individuals’ access housing and has identified 5 strategic focus injustice within a queer framework. engage in sex work, regardless health care system to provide equal government assistance, to filing areas. They are: violence against Through direct action, grassroots THE SERO PROJECT of whether they do so by choice, access to HIV prevention, care and class action lawsuits to bring about woman, fair access to resources organizing, community engagement, seroproject.com circumstance or coercion. One of treatment services for all people. systemic change. They represent the in relationships, access to land/ education, leadership development The not-for-profit human rights the first programs in the U.S. to Their mission is to ensure that every most deprived and abused people housing, access to fair labor and art, their goal is to build a organization promotes the assist survivors of human trafficking, person living with HIV has access to in society, including members of the practices and access to health care. strong and sustainable movement of empowerment of people with HIV, it has pioneered an approach quality comprehensive prevention working poor, and issues related queer leaders focused on working combats HIV-related stigma and to service that is grounded in and treatment services to live a to discrimination and oppression. towards social and economic advocates for sound public health human rights, harm reduction healthy life. With more than 16,000 justice within their own lives. and HIV prevention policies based and in the real life experiences of members, 267 branches and 72 UNIVERSITIES ALLIED on science and epidemiology its clients. Serving a marginalized full time staff members, TAC has FOR ESSENTIAL RESULTS rather than ignorance and fear. community, the organizations become the leading civil society MEDICINES (UAEM) results.org Sero is particularly focused on also engages in policy and media force behind comprehensive health uaem.org Their vision is a world where the ending inappropriate criminal advocacy, community education care services for people living with This organization believes that devastating impacts of poverty prosecutions of people with HIV and human rights documentation, HIV/AIDS in South Africa. Since universities and publicly funded no longer cripple the ability of for non-disclosure of their HIV working to create a world that is 1998, TAC has held government research institutions will be part individuals and families to sustain status, potential or perceived HIV safe for sex workers and where accountable for health care service of the solution to the access to themselves and contribute their exposure or HIV transmission. By human trafficking does not exist. delivery; campaigned against official medicines crisis by promoting talents to the world in which they engaging a network of people with AIDS denialism; challenged the medical innovation in the public live—where all people have a fair HIV who have been criminalized STAYING ALIVE world’s leading pharmaceutical interest and ensuring that all people chance at success. They encourage and empowering them to advocate FOUNDATION companies to make treatment regardless of income have access citizens to pressure their leaders for on their own behalf and their stayingalivefoundation.org more affordable and cultivated to essential medicines and other effective anti-poverty programs to compelling personal stories, Sero The prevention-based org launched community leadership on HIV and health-related technologies. The receive the attention, policies, and helps build a growing grassroots by MTV believes in stopping the AIDS. TAC has received numerous not-for-profit, rooted in a global funding they need. Their mission movement to mobilize the advocacy spread of HIV before it starts by international accolades, including movement of university students is to create the public and political necessary to end HIV criminalization focusing on the delivery of fresh, a nomination for a Nobel Peace promotes access to medicines will to end poverty by empowering and promote a human rights-based relevant prevention messaging that Prize in 2004. In 2006 the New and medical innovations in low- individuals to exercise their personal approach to end the HIV epidemic. breaks through to a young, global York Times named TAC, “the world’s and middle-income countries by and political power for change. audience, arming them with the most effective AIDS group.” changing norms and practices Combining voices of passionate information and empowerment

45 46 REACH OUT AND 2 INVITE OTHERS TO JOIN YOU The best place to start is by sending personal invitations via email, text or, better yet, letting people know with a FIND A GOOD phone call or in person. Tell 1 SPACE AND TIME people they are welcome to It could be the local library, bring others. COVER THE BASICS a school, a coffee shop, a 4 café, a diner or an AIDS- Think about who you Once you have your group service organization. Or, want to attend and where gathered, cover the basics. of course, your home. and how they receive Introduce yourself as the Consider whether you information. Then, consider facilitator and establish can schedule the meeting the best ways to reach them, that you’ll be leading the CONVERSATION discussion. Describe any right after the screening, such as fliers or post cards or whether you need to in public places, ads in the relationship you have to move to another space. local or regional paper, via the work described in How Find a place that allows for email, text message, or via to Survive a Plague and/or refreshments. If you can social media like Facebook how the film has inspired provide refreshments, great. or Twitter. Seasoned activists and motivated you. If not encourage folks to say that in order to get a bring a drink or snack for person to show up, you Review housekeeping after the screening. Ideally, need to reach out three logistics (location of wash create a conversation circle. times, including once in rooms, water, food if STARTER If that’s not possible, be person or on the phone. It’s available, etc.). Consider A FACILITATOR’S GUIDE FOR DISCUSSION PROMPTED BY HOW TO SURVIVE A PLAGUE sure to include comments a good idea to call people asking for volunteers to help from all over the room so the day before to remind with timekeeping and note no one feels left out. them to attend. taking. Share your objectives You’ve seen the movie. You’re inspired. Now rights, focus on the strategy and tactics that ACT for the group discussion, you’re ready to host a discussion about the movie UP used. In all cases, share this guide with your explain the format and the and talk with others about getting engaged and group members in advance. In case some of the SET AN AGENDA time frame Let people share taking action. participants don’t have Internet access, consider 3 their reactions to the film printing out some sections and having them on Your agenda may be and discuss their personal Where to begin? hand to share at the start of the meeting. Identify something simple such as connection to the issue. which of the articles in this guide speak to the creating a welcoming space In order to build community In advance: Set an objective for your meeting or core issues you wish to explore in your discussion for the group to engage in a and encourage people to discussion group. As a student, you may want to and suggest participants read those in advance, thoughtful discussion about work together, brainstorm get others involved in a cause or group such as the even if they haven’t yet seen the movie. the film and its implications ways that members of the Student Global AIDS Campaign activist initiative, for 60 to 90 minutes. Limit group or the group itself faith-based group, or film club. If you work The film addresses a wide variety of issues. the formal discussion to can effect change. with an AIDS service organization, the film and Are there experts in your community whose 90 minutes, call an official discussion around it is an opportunity to connect experience would provide a useful point of end and then let those with people in your community, encourage reference? Consider inviting them to join your who wish to do so talk HIV testing, support linkage to care, and foster group discussion. Before inviting them to speak, amongst themselves. Have discussion. It’s also a great way to strategize with make sure they see the film and talk with you a list of questions, quotes, others about raising money or reaching out to about it. themes and important more people in need of testing and, potentially, topics from the film handy treatment. If you work in the sphere of human to prompt discussion/ questions, especially if the 47 conversation lags. 48

5 SET THE TONE THE FOLLOWING “CONVERSATION STARTERS” If your group is new, or ARE GROUPED THEMATICALLY there are new people joining, suggest that ASSESS THE GROUP’S EMOTIONAL RESPONSE. everyone in the room ASK QUESTIONS introduce themselves. What inspired you most about this film? What moved Next, clarify the rules of 7 TO WARM UP AND you most? engagement. Ask people ENGAGE THE What does this film make you want to do? What did this film teach you that you to listen respectfully to GROUP 9 LEAVE TIME FOR others, refrain from CLOSURE didn’t know? Start the discussion by interrupting and be Did this film make you more willing to choosing a question from the Leave time at the end of the concise. Let participants get engaged? list below. If you decide to discussion to summarize know that you will interrupt If so, why? share your own experience, themes and highlight take- anyone monopolizing the or that of a colleague or home messages, and to conversation. Ask people EXPLORE THE THEORIES OF special guest, make sure make plans about any SOCIAL CHANGE. to raise their hands and For information about purchasing you spend 5 minutes on this follow-up items. Why were the early AIDS activists indicate they wish to speak. a copy of How to Survive a Plague first part of the discussion. so successful? You can say you’ll try to get for educational or personal use, Involve the group early on so Discuss with the group What were there unique challenges? to everyone—at least once. visit surviveaplague.com. To host people feel part of whether they would like How did they overcome them? a formal screening of How to the experience. to meet again and, if so, How effective was the role of street theater in the Survive a Plague at your company, collect contact information AIDS movement? PROVIDE TOOLS school, university or non-profit or 6 Don’t be afraid of brief from participants so you can How essential is the involvement of the media in any Give participants pencils and non-government organization, pauses in the action. send out details of your next movement? note cards. Some people contact: [email protected] Sometimes, people are meeting. Allow for leadership What types of tactics draw media attention? may not wish to speak out just thinking. roles to rotate through the but may have questions they group. Ideally, create an IDENTIFY THE CHALLENGES OF ACTIVISM. feel comfortable sharing action item or an agenda for Does civil disobedience have to be part of a by writing them down and the next meeting (e.g. creating movement for social change? having the facilitator share SHARE YOUR a flier, researching the issue, Would you feel comfortable with the group on their 8 OWN EXPERIENCE, recruiting new members, etc.). getting arrested? behalf. Share copies of the OR THAT OF How does one overcome fear? appropriate sections of A TRUSTED WHAT NEXT? the Guide. 10 COLLEGUE Partner up: maintain the ASSESS THE ROLES OF POWER AND ACCESS It breaks the ice if the momentum of your group, IN EFFECTING CHANGE. facilitator opens up. Also, consider working with other How do people gain access to the halls of power? by setting an example of (affinity) groups, schools or Thanks to the Ford Foundation How do people secure the attention and engagement candor and courage, you organizations to further your for support of the film and the of local, state, and can prompt more interesting agenda. The filmmakers campaign. Thanks to Bertha national politicians? conversation in others. of How to Survive a Plague BRITDOC Connect Fund, The How did the activists in the film appeal for funding have found that audience Fledgling Fund, Open Society from government? members may have felt a lot Foundations, Elton John AIDS How would you approach this in your community or of emotions by the end of Foundation and private donors for country today? the film. You may want to campaign support. take a moment for a “group Where are some good places to go to become an hug,” which simply means expert on the issues? acknowledging how What are the elements of AIDS activism that allow it people feel. to be effective, timeless, and widely applicable? 49 50 WORDS OF WISDOM five aids activists weigh in on what is required to change the world

Find out more about the system Advocacy is not just about making a you are trying to change than anyone commotion, but about fulfilling one’s who works in that system knows, internal perception of what will make and use that information to define to the world a better place. I believe that them how the system must change everyone has a small, still voice that to meet your community’s needs. says, “This is my journey, my path, Hold them accountable, follow the exactly what I am being called to money, make them have bad dreams, do.” Do not be distracted by the loud question their conscience, and present clamors of homophobia, racism and them with a better way to do things sexism. The noises that say to strong moving forward. women, “Don’t be strong.” Noises that Mark Harrington, Executive say to gay people, “Don’t be gay.” Director, Treatment Action Group Far too often those noises drown out that small voice with harsh messages SO, NOW WHAT? of what people should be or do. It is The deep, dark secret to effective important to know yourself as you build You’re fired up to change the advocacy work that will result in yourself. And do not ever let anyone dramatic progressive social change steal your joy. world. Here are some great Find Us: and literally save millions of lives is to Marjorie J. Hill, PhD, CEO of Gay just do it. I am always amazed at how Men’s Health Crisis ways to get started. On Twitter: @surviveaplague easy it is to win if you just follow the On FB: facebook.com/SurviveAPlague rules: choose an audacious goal, find If you know your cause is right, don’t CONNECT on and off-line out who can give you what you want be deterred no matter what others say. Check out the resource guide on pages 41-46, or Online: www.surviveaplague.com and don’t stop harping on said target Always keep one foot on the inside, link directly from surviveaplague.com/resources. (bringing more and more people with always ready to talk, and one foot on CONNECT with Us VOTE with Your Feet you each time) until you win. No one the outside, always ready to take it to Email the team behind How to Survive a Volunteer. Join a group. Start your own affinity ever won with a good policy argument the street. And, above all, work harder Plague at [email protected] group. Learn how at surviveaplague.com. alone. You need to be in their face than your opposition and be more daily—but it’s that easy! For [a great] creative. That’s how to win. GET CREATIVE VOTE with Your Wallet road map of how to win, see the Art meets activism on our tumblr page: Support our “free tickets for youth” initiative. The Reverend Charles King, surviveaplague.tumblr.com. Midwest Academy’s strategy chart in President and CEO, Housing VOTE. Just Plain Vote the book Organizing for Social Change Works SPREAD THE WORD It’s your right. Exercise it. by Bobo and Max. Share photos from your volunteer work, activism Jennifer Flynn, Managing or meet-ups across your social media networks. Director, Health GAP What makes activism work is anger and fear. It can not work without them. Larry Kramer, co-founder, ACT UP and Gay Men’s Health Crisis

51 EDITED BY PATRICIA FINNERAN AND REGAN HOFMANN DESIGNED BY JAMES FRANKLIN AND ROSARIA GANDAR INSPIRED BY THE WORK OF ACT UP 52 LEARN FIGHT LOVE surviveaplague.com

The How To Survive A Plague engagement campaign is made possible by:

Special Thanks to

Broadway Cares/Equity Fights AIDS | Donald Capoccia | Dan Cogan | David Cumming | Alan Getz | Sarah Green | Jennifer Hatch | MIX NYC The Ted Snowdon Foundation | Steiner-King Foundation | Joy Tomchin | Henry van Ameringen | Vault Planning | Jack Wadsworth