"[forlorn music]" "?" "?" "[forlorn music intensifies]" "?" "?" "?" "?" "[crowd chattering indistinctly]" "?" "?" "[whistle blows]" " Welcome to ACT UP!" "We are the aids Coalition to Unleash Power, a diverse, nonpartisan group of individuals united in anger and committed to direct action to... crowd:" "End the aids crisis!" " Less than 1 2 hours from now, we are going to be taking over city hall!" "[applause] all:" "Act up!" "Fight back!" "Fight aids!" " Yes?" " Mr. Mayor, in campaigning for the lesbian and gay vote in an election year, a bit of historical context is necessary in dealing with the aids crisis in New York City." "It wasn't until 1 983 that you met with people to deal with the aids crisis." "How do you respond to these criticisms?" " That is a falsehood." " Please, anybody who's thinking about being arrested, fill out a support sheet." "Make sure that your support person knows who you are and what group you're in." "Yeah?" " If we end up in the Tombs, is there, like, a queer tank there, and would you recommend that we ask to be there?" " There is a homo-tank, and I've been there." "And it's better than the straight tank," "let me tell you." " Who else?" "Yes?" " In the past, you've described ACT UP as fascist." "Yet in the press release, you called them "concerned citizens,"" "and I was wondering what changed your mind." " I don't think that you can't use both." "Fascists can be concerned citizens." "And I don't believe they are fascists." "I think they have used a fascist tactic." " Let us celebrate together tonight the end of the last day on which Ed Koch can tell himself that the communities which are being decimated by this epidemic are so weak and so divided among themselves, that he can keep serving us this kind of bullshit." "Tomorrow morning, he will begin to learn the truth!" "[cheers and applause] all:" "Act up, stand tall, tomorrow morning at city hall!" "Act up, stand tall, tomorrow morning at city hall!" "Act up, stand tall, tomorrow morning at city hall!" "Act up, stand tall... [foreboding music]" "?" "?" "?" "?" " We're talking to Jim Eigo from the Treatment Issues Committee in ACT UP." "Jim, what specific treatment issues are being brought into this demonstration this week?" " The municipal hospitals are totally falling apart." "More than half the people who get diagnosed with aids today get diagnosed in the emergency rooms of our city." "You're going to find yourself waiting four days in an emergency room before you get a bed." " Pretty scared, but being HlV-positive," "I don't have much choice in the matter." " I just love all these people, and I think that what we're doing is really right." "And, I mean, listen to this, and look at all the people." "It's just really wonderful, and it's worth putting yourself on the line for." " There is no accurate diagnosis." "There are incentives in the city hospitals not to diagnose people with aids." "And therefore, people don't get treated." "We are angry at the way this city has handled this crisis, and we demand that Ed Koch exert leadership and declare a state of emergency." "[cheering]" " Go in the street now or wait;" "those are the options." "One, he says go." " Two now." " Says "now." Three." "Tom?" ""Go now," Tom says." " We're standing here with Larry Kramer." "What is ACT UP trying to say today to Ed Koch?" " We're sending a message to public officials, to closeted public officials, that we won't be shat on anymore and obviously all the aids issues." " I would love to see, like, more cameras or something, you know, for our own protection." " Did everyone hear his concern?" " People die every day." "Friends get sick every day." "I don'tÜÜÜÜÜ It's like being in the trenches." "There's such anger in the community, and it is coalescing in a way that has never been done before." " Okay, which way do we face, girlfriends, this way or that way?" "[cheers and applause] [car horns blaring] all:" "Health care is a right." "Health care is a right!" "Health care is a right." "Health care is a right!" "Health care is a right." "Health care is a right!" "Pump up the budget!" "Health care is a right." "Health care is a right!" " You are currently in violation of the law by obstructing vehicular and pedestrian traffic." "You have the option of leaving at this time, otherwise... [crowd shouting indistinctly]" " Act up!" " Never be silent again!" "all:" "Fight aids!" "Act up!" "Fight back!" "Fight aids!" "Act up!" "Fight back!" "[indistinct shouting] [whistle blows]" " Fight back!" "Fight aids!" "[crowd clamoring]" " Act up!" "[siren wailing] all:" "Fight back!" "Fight aids!" "Stand up!" "Fight back!" " This man is a personal friend!" "Be careful!" " They're arresting journalists now!" " Act up!" "Act up!" "Act up!" "[all shouting indistinctly]" " Act up!" "Fight aids!" "Pray for the dead!" "[all clamoring]" " Fight back!" "Fight aids!" "[dramatic percussive music]" "?" "?" " I guess I'm feeling pretty hopeless at the moment." "I think, like, the biggest question that I'm facing now is how to remain hopeful in the face of increasing loss." " I don't know." "Maybe it sounds really corny, but I..." "As difficult as the time is for us," "IÜÜÜÜl like being alive." "And I love my friends, and I love my family." "I love the people around me." " I'm going to die from this." "This isn't going to be cured for years and years and years." " Doctor's office." " Hi, it's Peter Staley." "It's like living in a war." "All around me, friends are dropping dead, and you're scared for your own life all at the same time." "[crowd murmuring indistinctly]" "I was diagnosed with AlDS-related complex while I was working as a bond trader on Wall Street." "I had night sweats." "I began to get dry, patchy, scaly, itchy skin on my face." "And I would get sick constantly." "Colds would lay me up for weeks." "I started to look around in desperation for ways that I could find treatments to help save my life." "Um..." "And there was nothing coming out of our government's efforts," "I quickly realized." "Everything I read said I had about two years to live, at most." " What do we want?" "crowd:" "A cure!" " When do we want it?" "crowd:" "Now!" " What do we want?" "crowd:" "A cure!" " When do we want it?" "crowd:" "Now!" " What do we want?" "crowd:" "A cure!" " When do we want it?" "crowd:" "Now!" " I was on my way to work, and I got handed a flyer about ACT UP and aids." "My mentor says, "lf you ask me," ""l think they all deserve to die because they took it up the butt."" "I was deeply closeted, and I had to just stew about it for the rest of the day." "I got myself to the very next ACT UP meeting." "They could just tap into that immediate anger and get stuff done." "We will not leave until an administrator meets with us and tells us that St. Vincent's is willing to make a public statement condemning gay and lesbian violence." "[cheers and applause]" "All those in favor?" "All those opposed?" " They're coming!" "You see them right there." "You've heard about ACT UP." "You've seen our flyers." "The kiss-in happens tonight." "Act up!" "Fight back!" "Make love!" "Act up!" "Whoo, whoo!" " I'll deal with the camerasÜÜÜÜÜ" " Are you the security guard that was beating people up?" " Out with the cameras." "[crowd chattering indistinctly]" " Members of the mainstream media were thrown out, as we were earlier on, but Steve Zabel and I came back in, and we're bringing you this exclusive footage." " Don't destroy property!" "You're destroying property." " Well, actually you damaged some human property last week." " You damaged people." " You will not beat up on faggots, and you will not beat up on lesbians in hospitals in our own communities." " Two gay women were beaten up, and when her lover came to respondÜÜÜÜ you know the story." "And another story was when two gay guys came here, and one was sick with aids." "The security guard told him to, "Get the fuck out of here"" "and called him "faggot."" "I think if you're gonna work, especially in Greenwich Village, you should have some sensitivity training, 'cause we're not gonna have it." " I'm willing to meet with three people if the rest of you leave." "[crowd chattering indistinctly]" " Okay, one at a time." "One at a time." " It's unclear how to play it." "My own instinct would be to say," ""We'll be glad to meet with you." "And when the meeting's over, we'll leave."" "Not to leave before the meeting takes place." " Gregg?" " We've shown the kind of power we can have by immediate action, by sticking together, by reaching a consensus together." "We should take this in steps, and we should be coolheaded." " I'm gonna take a straw poll, okay?" "And we agreed to leave the waiting room while he met with three of our representativesÜÜÜÜ" "Gregg, Jerry, and NeilÜÜÜÜ in that public space right there." "And then we would stick around out here and wait to see what the outcome was." " So I said, "Enough of this." "This job is gonna kill me."" "So I went on disability and decided to become a full-time aids activist." " In the beginning, what drugs did we have?" "We had nothing." "And the pneumonia could come on like that and be gone, and a person is dead." "The skin lesions, the Kaposi's sarcoma was..." "People would be coming in with a purple spot." "Everybody was coming in with," ""What is this spot?" "What is that spot?"" "You'd have some guys come in with KS on their face, and they'd be putting makeup on their face." "And they'd beÜÜÜÜ it wasÜÜÜÜÜ" "And they were lucky if it just stayed in the skin, if it didn't go into their lungs." "And then if it went into their lungs, chemo didn't work, and then they were gone." "You were grasping at straws for everything, because these are young, vibrant people." "And all of a sudden, they're being snatched." "I think everything has to be put in perspective." " Larry?" " Hello." " [chuckles]" " Iris Long is lifesaving." "If you can't hear in the back and you want to, just shout it out, please." " This is a report from the American Society of Microbiology, a conference I went to at the end of May." " Quiet!" " There were many infections talked aboutÜÜÜÜÜ including AlDSÜÜÜÜ at this conference, and it was overwhelming to know how many pathogens, bacteria, fungus, protozoas, and viruses that are out there that can really, uh... make you very sick." " One day, this woman just showed up, this housewife, who had been a scientist and still was, and said, "You guys don't know diddly about what this is." ""And anybody who wants to learn about the system," ""how it works," ""how grants are made, how the science works," ""how everything works," ""how the nih works," ""how the FDA works," ""how you can deal with" ""all this enormous amount of material," "I'll teach you."" " There should be much more funding than there is for infectious diseases." " Iris was not gay, but she could not see, with what was going on around her and what she knew, not reaching out to the affected communities of aids." " I waited and went up to Iris afterwards and said, "I'm interested in what you were saying." ""I'd like to know more." "I'd like to help."" " And a few people joined her, and that became a bigger and bigger group, and that became the Treatment and Data Committee:" "TD." " They're still getting a hell of a lot more money than actually getting those treatments to anybody." "It was kind of a dorky activity for a bunch of East Village hipsters and artists to sit around reading medical journal articles." "We called it science club," "like it was chess club or something." " There aren't drugs." " lndividual after individual had to come to grips with the fact that," ""l will survive the longest, the most I know about what I'm putting into my body."" "So they all had to be become scientists, to some degree." " And what I would like everyone to do would be to keep on thinking of ways to refine these things to make them more clear to people that don't necessarily know the issues, like Ol." "No one knows what Ol is." "Okay, so I wrote it here, just 'cause it's shorthand." "Only 1 7% of people in their trials have been taking drugs for opportunistic infections or cancers." " Mark wasn't, like, the big, beefcakey guy." "He was super smart, smoked nonstop." " Right away, Mark digested, as by osmosis, everything." "And within a few weeks, he had come up with a glossary of aids treatment terms, and we started giving it out in our meetings." " Next we have an announcement by Tom Dwayne regarding housing." " This is Bernard Braverman, who's in danger of being evicted from his apartment that he shared with his life partner for many, many years." "His life partner died, and the landlord wants Bernard out of his home because his name was not on the lease." " What's his landlord's address?" "[laughter]" " We'll find him." " There are cards here to fill out, to write to the governor." "Let's make sure that our voices are heard in New York City to save the homes of PWAs and other nontraditional families." "Thank you very much." "[cheers and applause]" " I just want to say something about what's just happened." "I realized we haven't done anything yet for him and we haven't been effective and we haven't been powerful, but we will be." "It's very inspiring to know the power in this room is potentially available to each and every one of us." "[cheers and applause]" " One, two, three." "[girl laughs]" "Good?" "How was it?" "Is that as good as Daddy's or better?" " You're better." " Yay!" " Would you like Daddy to try it?" "Are you ready?" " [laughs and shrieks]" "That's not very good." "[laughter]" " One, two, three." " I know this sounds ironic, considering that it ended in divorce, but I think it is fair to say it's the only really successful love affair of my life." "I came out at age 40." "It was very bad timing to come out in the middle of an epidemic." "The question is, what does a decent society do with people who hurt themselves because they're human, who smoke too much, who eat too much, who drive carelessly, who don't have safe sex?" "I think the answer is that a decent society does not put people out to pasture and let them die because they've done a human thing." " For the first time today, the government approved prescription sales of a drug to treat aids." "The drug, AZT, is not a cure for the disease, but it has prolonged the lives of some aids victims." "It's the only government-approved aids drug in America." "But even this most promising of drugs is a source of frustration and anger." "At $1 0,000 a year cost per patient, it's prohibitively expensive for most and not widely available." "all:" "Out of the bars and into the streets!" "Out of the bars and into the streets!" " AZT was the most expensive drug in history." "They charge $1 0,000 a year." "We need to get a substantial price reduction out of this company." " The incident began at 10:0 this morning when four aids activists took over an office at Burroughs Wellcome, saying they had enough food and water to stay holed up for a long time." "The activists are demanding that Burroughs Wellcome" "lower its price of AZT." " Burroughs Wellcome is profiting off of our lives." "That's why we did today what we did." "And if they don't see to start listening to my community, to our community, the aids community, then we're gonna be back." "[solemn music]" "?" "?" " One of the worst, worst things was, when people died in the hospital, they used to put them in black trash bags." "It wasÜÜÜÜÜ [scoffs]" "It was really awful." "And not every funeral parlor would take patients who had died of aids." " ButÜÜÜÜÜso the least we could offer is sympathy and moral support, you know, and kindness and so forth." "And that, they deserved, in any case." "And when even that became denied, you know, by the totalitarian rules of organizations, of institutions, it was really horrifying." " It is the most frightening medical mystery of our times." "aids victims must deal with the trauma of being both a patient and a pariah." " I hate to use the word "gay"" "in connection with sodomy." "There's nothing gay about these people engaging in incredibly offensive and revolting conduct that has led to the proliferation of aids." " There is a feeling among members of any of a number of professions or just the general population that patients with aids, many of whom are homosexual, are a little bit different." "I think that that has led to a little bit of a complacency about the approach towards this disease." " In the absence of adequate health care, we have learned to become our own clinicians, researchers, lobbyists, drug smugglers, pharmacists." "We have our own libraries, newspapers, drugstores, and laboratories." " Some of the medications that were made available were not effective." "They were in this category that we called "what the hell" drugs, which is, "There's some evidence it could be useful." "It's unlikely to be harmful." "What the hell?"" " Should I type?" "[laughs]" " Yes, type." "Take your time." "Where are we?" " We're at the People With aids Health Group, the largest underground buyers' club in the United States." " And what do you do here?" " We help people import drugs from other countries, um, that are unapproved here:" "Peptide T, Albendazole," "Oral Amphotericin B." "We have a whole variety of things for your treatment pleasure." "[chuckles]" "None of which work, by the way." "[laughter]" "Put that in." " People with aids, what they were mostly thinking about was," ""Oh, drugs, how do I get it off-market?" ""How do lÜÜÜÜÜ" ""Will we ever get a black market for this drug?" "I hear this is good and"ÜÜÜÜ" "It was Iris who helped us see;" "we don't want a black market." "We want to make the real market work." "[static buzzing]" " Try it." "[match strikes]" "Hi, I'm Mark Harrington from ACT UP New York." "Recently, a lot of activists have been asking why ACT UP is going..." "Uh." "You've got to start over." "I got to do thatÜÜÜÜ I've got to do that over." " You can just start yourself over." " But lÜÜÜÜbut I won't get that wonderful cigarette-lighting thing." " I think the cigarette maybe is not going to work." " I shouldn't use the cigarette at all, really?" " I don't think so." "It's too, umÜÜÜÜtoo much." " Too much?" "[inhaling]" "Hi, I'm Mark Harrington from ACT UP New York." "A lot of people have been asking," ""Why are aids activists going to the FDA?"" "First of all, you have to understand that the FDA is one of the many federal aids bureaucracies which we're angry with for not doing enough in the fight against aids." "Half the people who take AZT can't take it 'cause of side effects." "And therefore, the FDA has to take a more activist stance in the experimental process." "And only the FDA has the power under existing laws and regulations to release the drugs that we want released now." "[static buzzing] How's that?" "crowd:" "AZT is not enough!" "Give us all the other stuff!" "AZT is not enough!" "Give us all the other stuff!" "AZT is not enough!" "Give us all the other stuff!" " It takes nine months to test a drug in Europe, in Belgium, in France, in Germany, in England." "We are not asking the FDA to release dangerous drugs without safety or efficacy." "We are simply asking the FDA to do it quicker." "crowd:" "Drugs for sale!" "Drugs for sale!" " Dextran sulfate for sale." "Get your dextran here." "You can't get it inside." "[indistinct chanting]" " FDAÜÜÜÜÜ but we're selling it anyway." " $30 for dextran sulfate!" "crowd:" "Release the drugs now!" "Release the drugs now!" "Release the drugs now!" "Get to work!" "Get to work!" "Get to work!" "Get to work!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Guilty!" "Seize control!" "Seize control!" "Seize control!" "Seize control!" "Seize control!" " Keep it moving!" "Keep it moving!" " Seize control!" "Seize control!" "Seize control!" "Seize control!" " Fight aids!" "Act up!" "Fight back!" " Fight aids!" "Stand up!" "Fight back!" "Fight aids!" " What's going on?" "What's going on?" " Seize control!" "Seize control!" "Seize control!" "crowd:" "Seize control!" "Seize control!" "Seize control!" "Seize control!" "Seize control!" "Seize control!" " Seize control!" "[cheers and applause]" "[cameras clicking] [indistinct shouting and chanting] [whistle blows]" " Start fighting!" " Come on, tell us why you got arrested." "Where are they taking you?" "What's going on today?" " We don't know what'sÜÜÜÜÜ where they're taking us." "We're here because this government has the resources to deal with the aids epidemic, and they won't do it unless we force them." " l.J. Hutchins reports live from Rockville, where the massive protest is wrapping up." "I.J.?" " Well, Jim, it's being billed as one of Montgomery County's biggest demonstrations in recent history, and it went off smoothly." "1 85 arrests, as a coalition of gay groups came to Rockville to shut down the FDA." " Tonight, from Washington, Crossfire:" "Against All Odds." "On the left, Tom Braden." "On the right, Pat Buchanan." "In the cross fire, Peter Staley of the New York aids Coalition to Unleash Power." " Peter Staley, you have the aids virus, and I am sorry." "But don't you think that the Federal Drug Administration has a responsibility not to let people, such as you, have quacks that could cause even more harm than you already have?" " The problem is, is that the FDA is using the same process to test a nasal spray as it is to test aids drugs, and it's a seven- to ten-year process." " You have the FDA giving you a drug." "So far, you've got AZT." "WhyÜÜÜÜ" " Which I can't take because it's tooÜÜÜÜÜ far too toxic." "And over half the people that have hiv can't take it." " Okay, but the FDA says there is nothing else that is worth anything." " Mr. Staley, this is gonna astonish you, but I agree with you 1 00%." "I think if someone's got aids and someone wants to take a drug, it's their life, and if it gives them hope, they ought to be able to take it." "What I want to ask you is whether you know of anything that you think might be some kind of miraculous cure that you think they're sitting on at FDA." " There are over 1 40 drugs out there that the FDA has identified as possibilities and are in some stage of being looked at right now." " Why are they holding back?" " Among that 1 40, there's got to be one or a combination thereof that canÜÜÜÜÜ that can slow down this virus or halt it in its tracks." " You're just simply carrying the virus." "Is that correct?" " I have a few very minor symptoms, and my immune system is virtually shot." " What would you like to take?" " I would like to be able to take dextran sulfate legally." " How would that hurt you?" " I'm taking it on the underground right now." " Well, why not, Mr. Braden?" " BecauseÜÜÜÜÜ well, I don't know anything about dextran sulfate." " Well, I'll tell you this." "It's an over-the-counter drug in Japan and has been for 20 years." " ButÜÜÜÜÜ" " Over-the-counter, yes." " But if the FDA saysÜÜÜÜ" " I'm only asking that they be released after there's a minimal amount of efficacy, not a 1 00% test." " You've got the pink triangle on your shirt," ""Silence equals death."" "I gather that means you're a homosexual." " Yes." " Looking in the camera, what would you tell some kidÜÜÜÜ say you had a younger brother, 21 years old, who also might have homosexual tendencies;" "what would you tell him if you wanted him to live a long life?" " Use a condom and also to use a lubricant, by the way, that has the medicineÜÜÜÜÜ" " This is Russian roulette." " It is not Russian roulette." "It is Russian roulette to not give people this information when human nature dictates that they're gonna go out there, and they're gonna have sex." " You mean celibacy is impossible?" " It's just not gonna work." "People aren't gonna do it, and lotsÜÜÜÜÜ" "lots of people are gonna die." "Now, would you rather have a lot of people cheating on their celibacy with thousands of people dying, or would you rather save those lives and let them have sex?" " I think that, uhÜÜÜÜ" "Well, thank you very much, Peter Staley." "Thanks for being in our studio." "Mr. Braden and I will be back in a minute." " One of the things we wanted was a drug that you gave to people who had cytomegalovirus and advanced aids, because people who had both tended to go blind." "It was called DHPG." "[somber music]" "?" "?" "In a way similar to AZT, it was highly toxic, but it was known to be effective because 6,000 people had already used the drug but never in a clinical trial." "crowd:" "Hey, hey, FDA!" "How many people did you kill today?" " We are with Jim Eigo from ACT UP, and there's a major protest going on here in Bethesda over the drug DHPG." "Tell us what's happening." " Well, this is the second meeting of the Bush commission for reviewing procedures for approving aids and cancer drugs." "And we thought, since the non-approval of DHPG is such a perfect example of how regulation has gone wrong, we'd bring it home to the commission itself by showing up here in force, and that's what we've done." " Okay, also inside at the hearing itself." "And I understand there's going to be an action in just a little while when Ellen Cooper speaks." " I guess so." " What about DHPG?" " What about DHPG?" " What about DHPG?" "[overlapping voices]" " Without the objective data, we feel that we would indeed be onÜÜÜÜÜ on treacherous grounds in defending that decision and, in fact, would be wide open to the charge of arbitrary decision-making." "Although, uh, we certainly wouldn't be accused of being inflexible." " You did it with AZT." "I don't see why you can't do it with..." " I mean, I have to say that the difference in the data between AZT And DHPG is the difference between night and day, as far asÜÜÜÜ" " Sight and blindness." " You're just as blindÜÜÜÜ" " Lose your life and lose your sight." " People have died since this meeting started, and four more are gonna die before it's over." " Who represents the patient on this panel?" " Where is a person of color on this panel?" " FDA relooks at the DHPG data and suddenly, "Oh!"" "Agrees with ACT UP." " Ready for a vote?" "All in favor, raise your hand." "One, two..." "Well, that's everyone." "[cheers and applause]" " It was really an amazing encounter, but it sort of felt like reaching the Wizard of Oz." "Like, you got to the center of the wholeÜÜÜÜÜ of the whole system, and there's just this schmuck behind a curtain." "There was no guiding agenda." "There was no leadership." "There was no global strategy for how to deal with aids in the U.S." "And so on the bus back from Bethesda, we decided to write a treatment agenda, because nobody was dealing with the entire map of aids, the entire constellation of opportunistic infections, the gaps in research, the underrepresented populations," "the fact that the diseases and the drugs might be different in those populations." "How would we ever find out?" "They weren't even being studied." "[carefree music]" " Jump on the bus!" " ?" "In the dark of night ?" "?" "I laid myself ?" "?" "To rest ?" "?" "Step out of the strange... ?" " Bye, Ron!" "Bye, Bobby!" " Come on, Catherine, let's go." " It's time to go." " Yeah." "?" "?" " ?" "Again ?" "?" "Come to life ?" "crowd:" "Crisis knows no borders!" "The aids crisis knows no borders!" "The aids crisis knows no borders!" "The aids crisis knows no borders!" "The aids crisis knows no borders!" "The aids crisis knows no borders!" " I'd just like to say that the reasons I can't get any of these drugs is 'cause, for nine years now, the leadership in this country has failed to come up with a plan of action." "They've failed to come up with a plan of research, a national research agenda." "People with aids and their advocates have finally done this for them." "This is it." "This is the plan we're presenting." "We need our government to read this plan." "We need them to work with us." "If they want to change it a little, we'll talk to them." "But I want them to adopt it." "I want them to get started on it." "I want them to save our lives." "Thank you." "[applause]" " I snuck around and grabbedÜÜÜÜ uh, grabbed one of those copies." "And it was very interesting." " We believe that the United States has a global responsibility to quickly develop effective treatments not only for hiv infection itself but for all of the opportunistic infections, which actually cause suffering and death in people living with aids." " This is not a new agenda, and it is not an agenda of only ACT UP." "Scientists agree with this." "Why can't we have it?" " The researchers and regulators are going to have to come up with a parallel release program that will get drugs to the people who need it before the five years down the pipe where they may be approved by the FDA." " I was scribbling madly in this copy of theirÜÜÜÜ their aids Treatment Research Agenda." "I would go back and forth between saying, "No, no!" "They don't understand!"" "To saying, "Whoa, you mean" ""this isn't the way we're doing trials?" "You mean people aren't allowed to do this or that?"" "But I have to tell you that I was still not ready to sort of go up to them and tryÜÜÜÜ try and engage." "I brought this copy back, and I distributed it to a small group of statisticians that was meeting regularly to talk about trial design issues." "The people sitting around that table got as excited as I did." "This had clearly been written by people who were very knowledgeable, very, very intelligent, and really wanted to do the trials the best possible way." "They were not against trials." "They wanted to get the right answers, but they wanted what they called humane trials." " It all came together in Montreal, but what was new for ACT UP..." "We went to a drug company." " There is renewed hope for people infected with aids." "A new experimental drug, ddl, will be distributed on a limited basis for free this fall by its developer, the giant Bristol-Myers company." "This marks the first time an anti-AlDS drug will be available even before safety testing is finished." "Full AZT treatment is too much for patient Peter Staley." "For nine months, he's been limited to a quarter-dose of the drug and wants ddl as soon as possible." " Do you need ddl to live, do you think?" " Yes, I needÜÜÜÜ I need ddl." "I probably need some other antivirals beyond that." " It is historic." "It is because the aids activist community has obtained this drug." "It is not the government." "No one has given it to us." "We have fought for it, and for the first time, we have won." "[indistinct chanting]" " So by '89, less than a year after our FDA demo, they had approved a drug to prevent blindness in people with aids." "And we had gotten expanded access to ddl, and that was a very powerful feeling." "We felt like we were taking direct action, and we were helping make people's lives better." "I wasn't sure that AZT or ddl were all that great, but we were beginning to get letters from people that said, "Thank you for saving my eyesight."" ""Thank you, ACT UP, for getting me access to ddl and helping to save my life."" " At Merck, hiv was an important scientific target." "hiv, of course, is a virus." "In order for the virus to infect an uninfected cell, it needs to construct itself in a particular way." "First, the viral RNA needs to transform itself into a DNA copy in order to knit itself into the nuclear DNA of the newly infected cell." "This occurs by a process called reverse transcription." "AZT and ddl were both originally developed to try to inhibit that process of establishing infection." "A number of other researchers began to focus on another portion of the viral life cycle:" "after the cell is already infected." "One of the steps that it takes is thatÜÜÜÜÜ is, it makes a viral protein." "It has to snip that viral protein in very specific places." "The resulting pieces self-assemble to make the viral particle." "And what does the snipping and what in fact controls the snipping is a viral protein called the protease." "If you genetically modify the viral protease so that it can no longer snip, the virus no longer has the ability to make those component pieces that it needs to make in order to self-assemble and make an infectious viral particle." " We solved the structure of hiv protease in 1 989 and published it pretty quickly." "I thinkÜÜÜÜÜ I think we saw the structure, and within a few weeks, it was in the literature." " And then the question became," ""All right, can we prove it?"" "Can we prove it that that is, in fact, the case?" "And most importantly, can we prove that if you inhibit that protease, if you knock out its activity, that the virus can no longer replicate and therefore make new progeny viral particles that would then go on and establish a new cycle of infection?" "[heartbeat thumping]" " aids is now the leading cause of death for men under 44 in New York and a half dozen other cities, surpassing homicide and all other diseases." "Yet Roman Catholic bishops are meeting this week to publicly oppose the use of condoms as morally unacceptable." "This puts them in direct opposition to U.S. public health policy." " The new church position condemns not only the immorality of condoms but their effectiveness as well." "The draft under consideration in Baltimore this week says it is, "A virtual certainty" ""that reliance on condoms will result in transmission of aids. "" "Of the bishop's proposed new policy," "New York City health commissioner Stephen Joseph says..." " This would be a public health disaster." "It would undoubtedly lead to more transmission, particularly in high-risk areas of the city, more disease and more death." " Catholic conservatives say not just physical death but spiritual death is at issue here." "As New York City's archbishop," "John Cardinal O'Connor put it..." " The use of prophylactics is immoral in a pluralistic society or any other society." " I think that's it, except, of course, we have Ann Northrop giving her sound bite technique." "[cheers and applause]" " Uh, we want everybody to join us, to support us, to destroy the power of the Catholic Church, to make our side the strong one." "And to do that, we must put out the message that we are the ones who are fighting for people's lives, and they are the murderers." "Don't be afraid of the media." "You're talking through them to the public." "We are trying to arouse, to anger an action." "And hone it down to, yes, a three-second bite, a five-second bite, just a phrase that will have an impact, that will say something specific and that will be understandable." "So... [laughter and applause]" " Thanks for the advice." " I don't have a phrase worked out, and so you're all gonna have to create your own, so this is empowerment." "[laughter]" " Act up!" "Act up!" "[chanting indistinctly]" " ?" "Answer me ?" "?" "Sweet Jesus ?" "?" "Won't you help me?" "?" " Please, you're interfering with us." "Step back." " This is Jesus Christ." "I'm in front of St. Patrick's Cathedral on Sunday." "We're here reporting on a major aids activist and abortion-rights activist demonstration, which will be taking place here all morning." "Inside, Cardinal O'Connor is busy spreading his lies and rumors about the position of lesbians and gays." "We're here to say we want to go to heaven too." " J.C. here with the Fire and Brimstone Network, and we'd like to ask you a little bit about this large vision that you've visited upon us." " Well, we've decided to rename the cardinal." "He's now Cardinal O'Condom." "This is our message to him that condoms are safe." "It's no sin." "[crowd shouting]" "[whistle blows, people murmuring]" " Stop killing us!" "Stop killing us!" "Stop killing us!" "We're not gonna take it anymore!" "You're killing us!" "Stop it!" "Stop it!" "Stop it!" "crowd:" "Stop it!" "Stop it!" "Stop it!" "Stop it!" "[organ music playing]" " How many more have to die?" "How many more have to die?" "Saving lives is morally right!" " Those protesting believe that the protests will result in some change of environment, some change of attitudes, perhaps." "The church will be teaching that homosexual activity is sinful, until the end of time." "That won't change." "[carefree music] [camera clicks]" "?" "?" " This is July 22, 1 989." "Now, Sara, what do you think about your dad being 44?" " Good." "[laughter]" " Thank you." "Thank you for your support." "One, two, three." "Yay!" "[applauding]" "We did it." "A lot of smoke." " Oh, boy." " I wish those candles would stop smoking." "It's bad for their health." " That's right." "Okay, Robert Rafsky, do you have any remarks before you jump off the edge of the porch?" " I have no interest in jumping off the edge of the porch." "I will jump up and down." "I think 44 is a very fine age." "It has a nice symmetry to it." "It has a nice feeling to it." "It's, uh, better than 22 and possibly better than 88." "We'll see." " [laughs]" " Here's how we planned this." "What we want to do is run this like a Treatment and Data meeting." "A number of times, we've had people come to a Treatment and Data meeting and speak on certain issues." "We try to get in depth." "We try to nail issues down." "This isn't a free-for-all." "Let's call it a working confrontation." "So why don't we start?" "This is Dr. Anthony Fauci." "Bob Rafsky." " I may be wrong, Dr. Fauci, but it's my understanding that thousands of people died from pneumonia because there was no priority within the government or within the medical system as a whole to push the known preventative treatments" "for a long time." "Now, those thousands of people are dead." "It would seem to me that someone who was within the government while that took place, as you were, must have on their conscience these deaths." " That is a tough one, um... [audience exclaims] No, it really is." "It's inexcusable that an academic priority should ever, ever come before the health of the people that you're working with." "There's no question about that." "But the reality of the situation is, there was a great reluctance among the community of everything from the scientists to the Congress saying that what we should be doing is not telling investigators what to do, but we should allow them to do" "what they feel is the most important." "Now, that sounds awful when you're putting it in the context of what we're talking about here, but the whole world isn't in this room." "crowd:" "Every 1 2 minutes, someone dies!" "Protests won me a Nobel Prize!" "Every 1 2 minutes, someone dies!" "[chanting continues indistinctly]" " aids activists stormed the government's premiere disease research center." "The National Institutes of Health is where an aids cure might be found." "It is where therapies are being tested in clinical trials." "crowd:" "No more secret meetings!" "No more secret..." " Demonstrators blocked access to buildings." "Scientists and administrators reporting to work stood around looking confused." "Activists charged the Bush administration with foot-dragging on aids research." "It's not the amount of federal money allocated to it so much as how research priorities are defined." " We need new drugs to keep people alive, but the nih is only testing old drugs, drugs that we already have." " Can you tell us what you're doing?" " Hi, I'm Jim Jenson, and I'm in a clinical trial here." "And right now," "I'm observing and participating in the ACT UP demonstration." " Why?" "Why do you support this action?" " Because we need far more aids research." "And we're just beginning." " What trial are you in?" " I'm in interleukin-2 AZT combination study." " Are there any women in your trial?" " No, there aren't any women at all." " People of color?" " Uh, no, there are not." " Why do you think that is?" " [laughs]" "Just the beginning of the problem." "crowd:" "Murder, murder!" " There are three major things that control nih research:" "stupidity, incompetence, and greed." "Those are the three major driving forces behind what's going on here and why there are no treatments out there for people living with this disease." "[crowd shouting]" "In that building down that way," "Dr. Anthony Fauci is deciding the research priorities for the National Institutes of Allergy and lnfectious Diseases." "We're down here 'cause we think we should be deciding the research priorities, because these are the people who know what's going on 'cause they're dealing with it every day." "[crowd shouting and cheering] [whistle blowing] [people shouting indistinctly] crowd:" "The whole world is watching!" "The whole world is watching!" "The whole world is watching!" "The whole world is watching!" "The whole world is watching!" "The whole world is watching!" "The whole world is watching!" "The whole world is watching!" "The whole world is watching!" "[crowd shouting indistinctly] [drums beating, indistinct shouting]" "[smashing]" " If anything, the mood after the nih was even bleaker than the mood before, because we had no indication that they were gonna change or respond to our demands, and we had in fact had a meeting with them in Bethesda" "after the nih action that indicated that there was total resistance to putting people from the community on the research committees, to letting the ACT UP observers attend the meetings, and to open up the meetings so that they weren't secret anymore." "Why should science be shrouded in secrecy?" "It's supposed to be based on a free exchange of ideas." "And so it was very important to stage in San FranciscoÜÜÜÜ before, again, the global community of scientists and people working on AlDSÜÜÜÜ why we had been at the nih, why the U.S. system wasn't working out," "and to reach the people directly that we had reached symbolically through the nih action." "[indistinct chatter] [indistinct chatter]" " About 1 00 protesters have already been arrested at the lnternational aids Conference that began today in San Francisco." "Hundreds more are angrily protesting a government policy they say neglects research and ostracizes victims." " Why don't you do an informational slide first?" ""United States has the most discriminatory immigration policies regarding hiv."" " I could say, you know, as a way to bridge the, uhÜÜÜÜ the rift between the scientific communityÜÜÜÜall of youÜÜÜÜ and the activists, we'd like you to join in some activism." "And I've always been painfully aware that in order for me to beat this virus and live," "I will need a great deal of help from all of you." "Can we all, before it's too late, begin to understand each other?" "Will we realize that we share similar motivations?" "During the upcoming days," "ACT UP New York will be handing out our aids Treatment Agenda, which includes a list of 99 drugs that we believe could be ready for small Phase I studies this year or next." "However, from your side, we're being constantly told to butt out." "On my side, the level of anger and frustration is reaching such a point that attitudes claiming that all of you are uncaring and in it for greed are now widespread." "While at times we may offend you, remember as well that like you," "ACT UP has succeeded in prolonging the lives of thousands of people living with hiv disease." "[cheers and applause]" "I would like to be joined in front of the stage by my fellow aids activists." "Would you all come up?" "[applause]" "At this moment, there are others just like us who are trying to get into this conference but are being barred by the billy clubs of San Francisco police." "And there are still others like us who are trying to get through customs at the San Francisco airport but are being detained instead because they are gay." "There's a man that could have prevented these absurdities." "This man has said that he would like to see a kinder, gentler nation." "If you believe that the immigration policy barring people living with hiv disease from entering this country is useless as a health policy and discriminatory as well, please stand now and remain standing." "[cheering and applause]" "Join us in vocalizing our collective anger." "Join us in a chant against the man who could bring down the ins barriers." "Join us in a chant against the man who has decided to show his commitment to fighting aids by refusing to be here today." "Instead, he is, at this very moment, in North Carolina, attending a fund-raiser for the homophobic author of the ins barriers, that pig in the senate known as Jesse Helms." "[crowd boos and jeers]" "Join us in this chant:" "300,000 dead from aids." "Where is George?" "crowd:" "300,000 dead from aids." "Where is George?" "300,000 dead from aids." "Where is George?" "300,000 dead from aids." "Where is George?" " You can all now consider yourselves members of ACT UP." "[cheers and applause]" " One of the things that happened in San Francisco was that we found out we had won some of our nih demands." "Fauci came up to me and said, "We had a meeting." ""We decided that we're gonna put you guys" ""on all the committees," ""and we're gonna let your observers go to the meetings, and the meetings won't be secret anymore."" " Never again could any of this be done without taking people with aids and their advocates into consideration." "This would be public business from now on." " You know, we should all be going through the bushes" "like this, like, sticking our heads up." "It was beginning to feel a little different because we'd spent all the time up until then being on the outside, sort of beating on the doors and trying to get in, and now they actually wanted to hear what we had to say." "[peaceful music]" "?" "?" " We brought them in at Merck." "We madeÜÜÜÜÜwe made a very specific effort to bring those individuals in so that they would see what it is that we were doingÜÜÜÜ or trying to doÜÜÜÜ from the very beginning." " This was really fantastic stuff because we were sitting down with them, andÜÜÜÜ sometimes from the very earliest stages of the development of a drugÜÜÜÜ and helping them plot out their strategy toward designing clinical trials." " The chemists who had worked on the project, a bunchÜÜÜÜÜ a couple chemists said," ""Let's look at all the aspartic protease inhibitors that we have on the shelf."" "And they tested 'em, and they found a few molecules that actually worked." "The challenge was, is now you had these molecules that were really good inhibitors in your assay, which is just in a test tube." "When you put it into animals, they just would never work, or they would never get absorbed by your system." " And I remember being very disappointed 'cause I had to share this information with sort of my own personal view, which was, this is gonna be a lot more difficult than, you know, we thought it was gonna be originally" "and in fact may not be possible." "And Bill Bahlman said, "Take a break, pick yourself up, and go back at it."" "If he and his colleagues and his friends around the table can take that attitude and do that," "I remember saying to myself," ""Emilio, you've got no right to say to yourself, 'l don't know if I can do this,' all right?"" "And so off we went." "And we kept going at it." " We're spending $4 billion a year on aids research." "When you consider that on a per capita basis forÜÜÜÜ compared to heart disease or cancer, it's an awful lot." " Almost nothing stops George Bush from a round of golf." "He's played nearly every day- and sometimes twice a day- during his August vacation." "[upbeat jazzy music]" " ?" "I'll be glad ?" "?" "When you're dead, you rascal, you ?" " ?" "Rascal, you ?" " ?" "I'll be laughin' ?" "?" "When you're in your grave, you dog ?" " ?" "Dirty dog ?" " ?" "When you're dead and in your grave ?" "?" "No more ravioli will you crave ?" " If the message is research," "I would say please talk to Dr. Fauci and others at the National lnstitute of Health, who will tell you that we're doing pretty well in funding of research." " ?" "Dirty dog ?" " ?" "I invite you to my house for a meal ?" "?" "All my meatballs you tried to steal ?" "?" "Mm ?" "?" "You're a devil, yeah ?" " Act up!" "Fight back!" "Fight aids!" "?" "?" " We've got to factor in the sensitivity of those of us who feel that there's a spiritual and moral aspect to this playing to the homosexual," "lesbian crowd." "It makes it different from anything else." " Oh, shÜÜÜÜ" " I wish they'd shut their mouths and go to work and keep their private matters to themselves and get their mentality out of their crotches." " I'm here today because Jesse Helms is the devil." "Jesse Helms has worked for years to do as much as he possibly can to ensure the continuance of the aids epidemic." " The disease is spreading because of him, and people are dying because of him." " This is an educational effort." "It's not a violation of people's property rights." "We've been very careful that absolutely no damage is done, and if any damage is done, whatever it is, we'll be happy to pay for it." "We have the money with us to pay for it." " You guys don't want to tangle with these people 'cause you don't want to get aids." "I know, but what's next?" "Come on, get out." " If they would keep their mouths shut and go about their business with whatever their sexual orientation is, nobody would ever say a word, and we wouldn't know anything about it." "But, no, they march in the streets, and they defy you to say anything about it." "Well, they don't like me, and I don't like them." " Back off the property." " Bunch of 'em climbed up on my house in Arlington and hoisted about a 35-foot canvas, uh, condom, one day, in protest of me." "[upbeat jazzy music, cheering]" " Fight aids!" "Fight aids!" "Fight aids!" "Fight!" " ?" "I'll be glad ?" "?" "When you're dead, you rascal, you ?" "[music fades and ends]" " Sir, when we started this colloquy," "I thought I was on your side, particularly on the First Amendment." "And under the First Amendment, people don't have to shut their mouths." "They have a right to speak." " Well, uh...they can speak, uh, just so long as, uh, they don't offend anybody else, uh, I suppose." "[monks vocalizing]" " Make sure your second coming is a safe one." "Use condoms." "Are you shooting?" " Yeah." "I just turned it on." "Okay, rolling." "Tell him we're rolling." " The machine is rolling." "You can start talking now, honey." " Oh, I didn't know she meant now." "What I was gonna say was, I just loveÜÜÜÜ" "I love so much to go up to the tenth floor because no one ever had explained to me that there was going to be light again in the world and that the whole world wasn't going to be dark." "Some great challenges face us as young people." "We're in our 20s, andÜÜÜÜ and this is the challenge that's been placed in front of me." "And, who knows, little camera." "Lots of other blind, deaf men have lived happy lives." "There areÜÜÜÜÜ there are many years to come." "Let's hope." "So..." "What the hell?" "Life is worth living." "[chuckles] lsn't it?" " The death rate just kept on climbing." "We realized that science really was up against a brick wall." "We kept getting new drugs approved to prevent opportunistic infections, and then somebody would just get another infection." " So, Peter, where are we going?" " We're gonna be going to the headquarters of Daiichi pharmaceutical companies of Japan." "This is their U.S. headquarters, and we're blockading their offices because they have a drug that's important both to aids activists and to cancer activists, specifically breast cancer, that they've been dragging their feet on" "for over two years now, and we don't understand why, but we certainly are gonna try to let them understand why we're concerned." "And, everybody..." " Wait for you at the end of the hall." " Just wait outside the elevators." " Shh." " Hey." "Hi, we're with ACT UP." "We're doing an act of civil disobedience." "Please remain calm." "Jim, it's Peter." "We're in." "Send all the press." " Hello, we're from ACT UP New York." " You already have the blood of several thousand people on your hands, and those of us like me who have Kaposi's sarcoma are gonna die, and we are here until we get arrested." " You seem to know nothing about the actual details of the development of this drug." "Maybe you're just not telling us." " Mr. Borsic, have you scheduled a meeting with the FDA?" " Yeah, as soon as we can." " We have helped many companies through this process." "We can take a drug from your test tube to the market in under two years if you work with us, and we will pave the way for you with the Food and Drug Administration." "But this total reluctance on your part is gonna get you nowhere." " Have been used in people for 30 years." " lt'll end up killing us, all right?" " See this dark mark on my forehead?" "That's Kaposi's sarcoma." "It's gonna spread!" "It's gonna kill me." "You coming to my funeral?" "Because you're the man fucking responsible." "You are my murderer in your shirt and tie." " Do you think that you'll live to see a cure?" " No." "I don't." " Do you think that you'll live?" " No." "No." " You expect to die from this?" "[somber music]" "?" "?" " The anger just mounted and mounted and mounted the more people who were dying." "Once a week, we met." "And at that meeting, a lot of people came who were just terrified they weren't gonna be alive even the next week." "What can we do?" "How can we get there?" " I think ACT UP's anger turned in after having been directed out so long." "In its first few years," "Treatment and Data pretty much got everything it wanted from the floor of ACT UP, but as Treatment and Data was becoming more and more technical, there were a lot of people in the general membership of ACT UP" "that saw that as an elite, and that maybe it would be better if that elite was pulled in a bit." " There was a fear, I think, that we were getting too close to the people in power, that we would compromise our own principles." "And the people who were more interested in the social issues became uncomfortable with that." " I remember this very divisive moment where, um, you know, there was a proposal for moratorium on meeting with drug companies, and someoneÜÜÜÜÜ for six monthsÜÜÜÜÜ and there was a huge and impassioned debate over it," "and someone saidÜÜÜÜÜ a woman who was not HlV-positive said," ""Well, it's not like it's for the rest of your life."" "And for a lot of people in the room, it was the rest of their life." "crowd:" "Act up!" "Fight back!" "Fight aids!" " There were inevitable splits in priorities." " You know it quite well." " I know." " And it was completely left out of the nih research agenda." " I agree." "IÜÜÜÜÜlÜÜÜÜÜ" " I remember a lot of dirty tricks that happened and a lot of fear within the organization that the various factions had done this to each other." " Mark Harrington," "Mark Harrington, there's a video camera here now." "Would you like to take an oath that you will not write nasty anonymous letters to people?" " I've been getting some hate letters too, but those are unsigned." "I don't everÜÜÜÜÜ I don't everÜÜÜÜÜ" " So you'll keep on writing nasty letters to people?" " There were a lot of charges in the midst of that, of sabotage and threats." " Our last speaker isÜÜÜÜ is Larry Kramer." " Why didn't you answer the charges?" " Bill, you're gonna have a chance to talk." "All right, everybody'sÜÜÜÜ" " Don't lecture me, you stupid, lazy, incompetent shithead!" " Bill, everybody got the flyerÜÜÜÜ [both speaking at once]" " You can't just lick his ass before he talks!" " Shut the fuck up and let him answer!" " Look, there are a lot of people in the audience who want to ask and talk about treatment, and I think it's important that we allow that to happen." " Oh, we're gonna dictate free speech now?" " You're the one who's interfering with speech right now." " Go back to GMHC or whatever aids pimp operation is paying you." "You're making the same point George Bush madeÜÜÜÜ" " Plague!" "We are in the middle of a fucking plague!" "And you behave like this!" "Plague!" "40 million infected people is a fucking plague!" "We are in the worst shape we have ever, ever, ever been in!" "All those pills we're shoveling down our throats, forget it!" "ACT UP has been taken over by a lunatic fringe." "They can't get together." "Nobody agrees with anything." "All we can do is field a couple hundred people in a demonstration!" "That's not gonna make anybody pay attention!" "Not until we get millions out there!" "And we can't do that!" "All we do is pick at each other and yell at each other!" "And I say to you in year ten the same thing I said to you in 1 981 when there were 41 cases." "Until we get our acts together, all of us, we are as good as dead." " In the end, the Treatment and Data guysÜÜÜÜ" "Peter, Garance, Mark, and some othersÜÜÜÜÜ split off and formed their own separate organization." " TAG was one of the little mercury balls that flew off the main body of ACT UP." "A more sort of "think tank" type project came about." " Mr. Harrington, a TAG member, educated at Harvard College, and he has worked for a long time on experimental treatments for the disease and also the basic science." "And Mr. Gonsalves was born in Long lsland and attended Tufts University, also a TAG member." "I guess I can do nothing better than to turn this conference over to my speakers." "[chuckles]" " I noticed that you're both sitting up there in suits and ties." "Do you feel that your approach is better than circling nih buildings and so forth?" " I think that we like to keep our options open, but it's silly to risk arrest and the hassles that are attendant upon it if you can get serious attention and negotiations going with other measures." " We've just released a report, a critique of all the nih's aids programs." " The research is spread out over 1 2 agencies." "There's no coordination." "There's a lot of duplication." "There's no leadership." " The budget is shrinking and shrinking as cases mount, and the president needs to be blamed, as well as the Congress, who cut the entire nih budget by $1 50 million two weeks ago." " Our recommendations, I think, are gonna require some legislation." "So we have to go to our friends on the hill and see what wonders they can work for us." "[somber music]" "?" "?" " We had this one particular compound that looked like it may have had the potency and the physical properties that we wanted, and it could be a possible drug." " We said, you know, "Let's put this in HlV-infected individuals, and let's see what happens."" "So we went into HlV-infected individuals with this drug called Crixivan, and you could see a very substantial drop just with the one protease inhibitor;" "you could see a very substantial drop in virus load." "So that was the first week." "The second week was very disappointing, because what we saw in the second week was, in fact, the virus load coming right back up again." "One exception." " There was one patient thatÜÜÜÜ patient 1 43, I believe, was his nameÜÜÜÜÜhis numberÜÜÜÜÜ that the virus went down and stayed down." " That told us that it was possible." "If it can happen in one, then by definition it can happen in everyone." "You just need to figure out how to do it." "That puts you in a completely different place and in a completely different state of mind." "So then the question became," ""Okay, now what do we need to do in order to make it possible?"" "[cheers and applause, whistles blowing]" " This is the beginning of the primary season to elect the next president." "We want to send a message to all of the candidates:" "we have not seen them actively address the aids plague, and we thought it would be best to send a message by voting with our feet in the streets." "I want to call for a massive march on Washington." "The weekend the aids quilt is gonna be there, we have got to surround the White House with people concerned about aids to push Bush out of the White House!" "[cheers and applause]" " Last night, a man with aids heckled Clinton, charging that he had a bad record on fighting aids in Arkansas." " When voter Bob Rafsky met Bill Clinton, it was anything but pleasant." " We're dying in this state!" "What are you going to do about aids?" " First of all, it will become a part of my obsession as president." " That's why I'm running for president, to do something about it." " Now, will you just calm down?" "[laughter and applause]" "I feel your pain!" "I feel your pain." "But if you want to attack me personally, you're no better than Jerry Brown and all the rest of these people who say whatever sounds good in the moment." "If you want something to be done, you ask me a question, and you listen." "If you don't agree with me, go support somebody else for president, but quit talking to me like that." "This is not a matter of personal attack;" "it's a matter of human loss." "[applause and cheering]" " I came here tonight because I'm dying from aids." "And it doesn't matter to me who the next president is if they don't change 11 years of government neglect of this epidemic." " Is this on?" "This isn't on." "Um, okay, first off, what happened this week was," "aids became an issue in this campaign." "[applause and cheering]" "I'd like to call down Bob Rafsky." "[cheers and applause]" " Act up!" "crowd:" "Fight back!" "Fight aids!" "Act up!" "Fight back!" "Fight aids!" "[cheers and applause]" " Uh, never debate a Rhodes scholar." "It gets you into a world of trouble." "[laughter]" "It looks like what we have to do is to keep forcing these clowns to say the right thing so that if one of them happens to become president, we can hold them accountable for doing the right thing." " Yeah." " But I justÜÜÜÜ it's always important to say that we all know that the names of the people who might save our lives are not Bill Clinton and Jerry Brown, et cetera." "The names of the people who might save our lives are lris Long, Mark Harrington," "Peter Staley, et cetera." "And they're the ones who will be remembered as the heroes of this epidemic, as well as those who have gone before." "[cheers and applause]" " ?" "And he smells like one too ?" " Well, I haven't showered, so I'm not surprised that you would say that." "No, I've just been writing, and..." "I was up at 5:00 a.m. yesterday." " This is Bob's birthday," "July 22, 1 992." " Ready for the pyrotechnics?" " Yes!" " Nathaniel, help." " No!" " Yay!" " Lydia E. Rios." "Steve H." "My friends, David Evans," "Nicolas Kaiser, George Marshall, and my beloved brother Dennis J." " Robert R. Hakins." "Phillip Gregory Ellison." "Terry Ronan." " Michael Bennett." "Ron Field." "Tina Chow." "Perry Ellis." "Freddie Mercury." "Peter Allen." "To the thousands of other people who were made to suffer in silence." " Join ACT UP for a political funeral!" "Meet at the steps of the Capitol at 1 :00 p.m." "Give a wake-up call to George Bush and Bill Clinton and Perot." "[kids laughing]" " I think the quilt itself does good stuff and is moving." "Still, it's like making something beautiful out of the epidemic." "And I felt like doing something like this is a way of showing there's nothing beautiful about it." "You know, this is what I'm left with." "I've got a box full of ashes and bone chips." "You know, there's no beauty in that." "And I felt like a statement like this is like saying," ""This is what George Bush has done," you know?" "This is what him and Ronald Reagan before him have done." "These are our loved ones, and this is what they've been reduced to, and we're bringing them to the person who's responsible for their death." "[ethereal music]" "?" "?" "crowd:" "Fight back!" "Fight aids!" "Act up!" "Fight back!" "Fight aids!" "Act up!" "Fight back!" "Fight aids!" "Act up!" "Fight back!" "Fight aids!" "[chanting indistinctly]" "Bringing the dead to your door!" "We won't take it anymore!" "Bringing the dead to your door!" "We won't take it anymore!" "Bringing the dead to your door!" "We won't take it anymore!" "Bringing the dead to your door!" "[helicopter whirring] [ethereal music continues]" "?" "?" "?" "?" "[whistle blowing, applause]" "crowd:" "Act up!" "Fight back!" "Fight aids!" "Act up!" "[ethereal music swells]" "?" "?" "Act up!" "Fight back!" "Fight aids!" "Act up!" "Fight back!" "Fight aids!" "Act up!" "Fight back!" "Fight aids!" "Act up!" "Fight back!" "Fight aids!" "[shouting indistinctly]" "Shame!" "Shame!" "Shame!" "Shame!" "Shame!" "Shame!" "Shame!" "Shame!" "Shame!" "Shame!" "Shame!" "Shame!" "[ethereal music swells]" " I love you, Mike!" "I love you, Mike!" "?" "?" "[music fades]" " Welcome to the first of three debates among the major candidates for president of the United States, sponsored by the Commission on Presidential Debates." " Mr. President, yesterday tens of thousands of people paraded past the White House to demonstrate their concern about the disease aids." "A celebrated member of your commission," "Magic Johnson, quipped, saying that there was too much inaction." "Where is this widespread feeling coming from that your administration is not doing enough about aids?" " I can't tell you where it's coming from, but I am very much concerned about aids, and I believe that we've got the best researchers in the world out there at nih working the problem." "It's one of the few diseases where behavior matters." "And I once called on somebody," ""Well, change your behavior."" "If the behavior you're using, uh, prone to cause aids, change the behavior." "Next thing I know, one of these ACT UP groups is out, saying, "Bush ought to change his behavior."" "You can't talk about it rationally." " Let everyone here know that this is not a political funeral for Mark Fisher, who wouldn't let us burn or bury his courage or his love for us any more than he would let the earth take his body" "until it was already in flight." "He asked for this ceremony not so we could bury him but so we could celebrate his undying anger." "This isn't a political funeral for Mark;" "it's a political funeral for the man who killed him and so many others and is slowly killing me, whose name curls my tongue and curdles my breath." "George Bush, we believe you'll be defeated tomorrow because we believe there's still some justice left in the universe and some compassion left in the American people." "But whether or not you are, here and now, standing by Mark's body, we put this curse on you." "Mark's spirit will haunt you until the end of your days, so that in the moment of your defeat, you'll remember our defeats." "And in the moment of your death, you'll remember our deaths." "As for Mark, when the living can no longer speak, the dead may speak for them." "Mark's voice is here with us, as is the voice of Pericles, who, two millennia ago, warned the Athenian soldiers who didn't have to die and in whose death he was complicit but who had the nobility to say" "that their memorial was the whole Earth." "Let the whole Earth hear us now." "We beg, we pray, we demand that this epidemic end!" "Not just so we may live but so that Mark's soul may rest in peace at last." "In anger and in grief, this fight is not over till all of us are safe." "Act up." "Fight back." "Fight aids." "[delicate music]" "?" "?" "?" "?" "[delicate music]" "?" "?" " The debate over aids therapy has reignited with a new European study that challenges the effectiveness of AZT, the widely prescribed drug used to treat the hiv virus." " This study disproves what every other study proves, is that the drug is at best modest, mostly useless, not good for you in the beginning." " Two other drugs, ddl and ddC, were approved because they were as good as AZT, which means that they might not be very useful either." "All this is profoundly dispiriting for advocates of people with aids." " We thought we had made some advance in aids treatment over the last five years, and these studies show that we really haven't." " Many activists now admit their demands were shortsighted." " It's been a huge expenditure, a waste of money for the U.S. taxpayer, and it was a naiveté on our part to think that the magic bullet was out there." "It just had to be tested in humans and, uh... given to us as the cure." " Many doctors and scientists say the bleak results presented here indicate the U.S. government needs to substantially reorganize the way it conducts aids research." "Robert Bazell, NBC News, Berlin." " There's been this big crisis at St. Vincent's about the way that we talk about the, uhÜÜÜÜ what happened in Berlin." "Couple of doctors said they were afraid of people committing suicide now." " I don't feel like, "Oh, now I just"ÜÜÜÜ" "I don't feel, "Oh, now I want to give up." "Now I want to stop living because AZT doesn't work."" " I've felt forever now that I'm not gonna outlive this epidemic, that I willÜÜÜÜÜ that I will die from this." " You know, maybe that is our future, that we're gonna watch each other die." "It'sÜÜÜÜthat's not a new thought." "We've been thinking that ever since we started the group." " The way that the recent spate of deaths isÜÜÜÜ" "I don't know." "It all seems so much more apocalyptic." "Like, the story doesn't seem to have this relationship to effective treatment or a cure anymore." "It now seems to have this relationship to death." "It endsÜÜÜÜÜ it ends with everybody dying." "Will the last person alive in Chelsea please turn out the lights?" "[static crackling]" " Joining me now is Dr. David Kessler, the commissioner of the Food and Drug Administration." "Dr. Kessler, how excited should we get about this new family of drugs, these protease inhibitors?" " I don't want to overpromise, but these are the most potent drugs we've seen against the virus." " I know that you are pushing for faster FDA approval of these drugs." "I know that the application has just gone for the first of these drugs to the FDA." "It's still gonna take six months." " We will turn around that application as quick as ever." "We're approving drugs in a matter of months these days." " But you were telling me that's six months, right?" "That's as quick as possible." " We may be able to do it even a little quicker." " A split has developed between those who want rapid approval based on early indicators of success and the Treatment Action Group, or TAG." "TAG has asked the FDA to reconsider the accelerated approval process." " We told the FDA, "No."" ""The company has asked you to approve that drug too soon." "They need a little bit more data first."" " TAG is asking the FDA to take a closer look at saquinavir, the first protease inhibitor to seek approval." " We need to make sure we don't repeat the mistake we made with AZT and ddl." "This is a new class of drugs." "We need to know if it works." "The battle over early approval of saquinavir was a really pivotal moment for treatment activism." "And we took such shit for it, from within." " There are a lot of people who do agree that there are problems, serious problems, the way drug testing and drug trials are run." "But there are many of us who feel that halting accelerated approval is not necessarily the answer." " TAG made their proposal for this large simple trial of 1 8,000 people that they want to put in a placebo control trial where 1/3 would get placebo." "They pushed this idea on the FDA at a secret meeting, which was not announced to the community." "This is something we have fought hard and long for." "We've been arrested to get accelerated approval through." " It's the behavior that I have a problem with." "It's the work they're doing that I have a problem with, and it'sÜÜÜÜÜ this is what I am gonna fight." "I'm not interested in mud wrestling with the boys." "I am absolutely enraged that there are people who have appointed themselves elitist representatives and represent themselves as the single voice of this epidemic." "I am gonna fight them, my patients are gonna fight them, and you goddamn well better fight them!" "[cheers and applause]" " Apparently there was a big discussion on accelerated approval and protease drug development" "last week on the floor, so we just wanted to give you sort of the TAG perspective and give you a sense of our proposal around protease drug development so we can start from a baseline of common understanding and knowledge." " This proposal is not about taking expanded access away, taking accelerated approval away." "This is about adding something." "This is about figuring out how do we get information about how to actually use these drugs." " You need more people when you have a less powerful drug." "If we were dealing with a penicillin, we could do it in 20 people." "So we put together a large simple trial that tried to synthesize expanded access in large simple trials." "And what we did is, we presented it to Merck." "We presented it to the FDA." "We wanted to start a community discussion." " I just wanted to thank Gregg and Derek for coming to tell us about this." "[applause]" "Because we hadn't heard anything until we read about it in Barron's." " If you wanted to hear the proposal, you could have heard it 40 times." "It's been talked about all over." " Dr. Cotler wants to speak." " TAG is talking about getting accurate information." "ACT UP is talking about making drugs available." "There should be a way to mesh those two." "It's really not one or the other." "Your two groups are really talking past one another." "Try not to scream." "Try not to go at each other's throats, but just talk, because the differences really can be bridged." "[all talking at once]" " No, no, no." " Hey!" " Shh." "[all talking at once]" " Quiet!" " '93 to '95 were the worst years." "It was a really terrifying time." "They were the worst years." "And then we got lucky." "[pensive music]" "?" "?" "[man singing indistinctly] [music continues]" "?" "?" " Um..." "You know, just losing..." "And, uh... just so many... so many good people." "And..." "uh..." "You know, like any war, you wonder why you came home." "[man singing indistinctly] [music continues]" "?" "?" "[keyboard clacking]" " Mark collected all of our writings, pieces that all of us had done about what had gone wrong in the ways that we studied previous drugs and what we were already doing wrong in terms of trying to figure out" "whether the protease inhibitors worked, and we published it as this big report and started passing them out everywhere we went." "Let's do this study." " They elevated themselves by their own self-education about these things, and then it became very, very clear that you weren't gonna mess with these people, because they knew exactly what you were talking about, and they knew exactly what they were talking about." " Activists created a system that was able to do everything faster, better, cheaper, more ethically, and more effectively." " They forced people to put together the right clinical trials, where you had the patient in mind, and you weren't cutting corners." "And, of course, the big breakthrough was combination therapy, 'cause monotherapy was clearly not the way to go." " So let's go back into patients, and let's go back into patients with Crixivan plus AZT plus 3TC." " The activists proposed a study design;" "industry used it." "It got the drug approved in six months." " So I was at a meeting in Washington, and I stood up there, and I showed for the first time the data in the study." " The data goes up on the screen, and everyone gasps, and cameras start to click." "And justÜÜÜÜit's a realization that this isÜÜÜÜÜ this is a really great drug, and itÜÜÜÜÜit could work." " I remember sitting there in a hotel room in Washington, D.C., our hotel banquet room, and just crying." "It was like, "We did it." "We did something."" " It was too much to take in at that point." "It wasn't until we started putting the drugs in our bodies and we all went home and... startedÜÜÜÜÜ went straight on that regimen that had been on that slide, including Crixivan and two nucleoside analogues." "And sure enough, it happened in us within 30 days, all of us." "Undetectable, undetectable, undetectable." " The dying was stopping with triple-drug combination." "And if you needed your clinical trial, you could just go to these hospitals that were not filling up the way they were filling up with people with hiv." " You would see their Kaposi's sarcoma lesions that had been bright and red and big melting back into their skin." " They were calling it the Lazarus effect." "People who were deathly ill would get put on this drug, and all of a sudden, they're working again." "That was a phenomenal feeling." " It worked." "You know, we did something remarkable." " So that breakthrough, you know, that we thought was gonna happen in '88 or '89 if we just worked fast enough, you know, it did happen." "But not until '96, and so..." "You know, a lot of people died." "Maybe if Reagan had started putting money into aids a little earlier... [sniffles] [sighs]" "They wouldn't all be dead." "[sniffles]" " I feel very fortunate." "And there's probably a lot of complicated reasons why, but I still find it very difficult to plan for the future and/or accept that" "I will have a long life, which is unfortunate, because I've had a long life, and I've been living with aids for 20 years." "But it's hard for me to relax into life." " I know lots of us went through really difficult times after, um, trying to figure out," ""Well, what do I do now?"" "You know?" "Not just because I didn't think I had a future and now I do, so I have to make some plans, but..." "How do I do something else that is as... [sighs]" "I mean, it's a weird word, but as fulfilling as that work has been." " To be that threatened with extinction, um..." "And to not lay down, um..." "But instead to stand up and to fight back." "The way we did it, the way we took care of ourselves and each other, the goodness that we showed, the humanity that we showed the world is just mind-boggling, just incredible." "crowd:" "Fight aids!" "Act up!" "Fight back!" "Fight aids!" " Every single drug that's out there is because of ACT UP, I am convinced." "We had the brainpower, and we had the street power." "We had the good cops and the bad cops." "The government didn't get us the drugs." "No one else got us the drugs." "We, ACT UP, got those drugs out there." "It is the proudest achievement that the gay population of this world can ever claim." " We could do it because we could deliver hundreds and sometimes thousands of bodies." "We had people with aids putting their bodies on the line, flopping out in the streets, saying, "Fine, this is my body." "Take me away."" " I drew the line there." "[chuckles]" "I didn't want to get arrested." "[laughs]" "That far, I wouldn't go." "[upbeat rock music]" "?" "?" " ?" "Keeping up ?" "?" "Keeping up with the feeling, oh, yeah ?" "?" "Getting to know what you like ?" "?" "And what you love ?" " I'd like to close with words written by fellow aids activist Vito Russo:" ""When future generations ask what we did in the war," ""we have to be able to tell them" ""that we were out here fighting," ""and we have to leave a legacy" ""to the generations of people who will come after us." ""Remember that someday the aids crisis will be over." ""And when that day has come and gone," ""there will be a people alive on this Earth," ""gay people and straight people," ""black people and white people," ""men and women," ""who will hear the story" ""that once there was a terrible disease," ""and that a brave group of people stood up and foughtÜÜÜÜ" ""and in some cases diedÜÜÜÜÜ so that others might live and be free."" "?" "?" " ?" "And there's ?" "?" "And there's ?" "?" "And there's no end in sight ?" "?" "And there's ?" "?" "And there's ?" "?" "And there's no end in sight ?" "?" "?" " We might have a federal charge if they get picky." " Great." "Leavenworth, here we come." "?" "?" " An invoice?" "[indistinct chatter] [laughter]" " ?" "Keeping up ?" "?" "Keeping up ?" " Green, green." " Ouch, that hurts." " ?" "Keeping it up ?" "?" "Keeping it up ?" " lnformation is essential so that doctors and patients can make intelligent treatment decisions." "?" "?" " Okay, all right." "Do I have to hold the red button?" " No, you can let go, okay." " I'm really glad to see everybody here." "You look really good." "[scattered laughter]" " ?" "Try to keep up in time ?" " I'd like to suggest it would not be unethical to do a randomized trial of two different prevention programs." "?" "?" " If we don't eradicate hiv everywhere, we will never eradicate it anywhere." " ?" "Keeping up ?" "?" "Keeping up ?" " We may march without incident, or they may arrest us." "But it'll be fun." "?" "?" " About the plane in Sky Magazine." "[woman laughs]" "?" "?" " [singing indistinctly]" " ?" "And there's ?" "?" "And there's ?" "?" "And there's no end in sight ?" "?" "And there's ?" "?" "And there's ?" "?" "And there's no end in sight ?" "?" "Keeping up ?" "?" "Keeping up ?" " In just over two years, that drug went from test tube to full approval." " ?" "Heartbeat won't go slow ?" "?" "And when it's knowing ?" "?" "That you will be there tonight ?" "?" "Keeping up ?" "?" "Keeping up ?" "?" "Keeping ?" "?" "Keepin' it up ?" "?" "Trying to keep going ?" "?" "There's no end in sight ?" "?" "Keeping up ?" "?" "Keeping up ?" "?" "Keeping up ?" "[music ends] [whimsical music]" "?" "?" " ?" "In the dark of night ?" "?" "I lay myself ?" "?" "To rest ?" "?" "Step out of the strange light ?" " ?" "I go to bed ?" "?" "For the blanket's quilted ?" "?" "And I am dead ?" "?" "I turn to the stars ?" " ?" "Stars over my bed ?" "?" "?" " ?" "Come to life ?" "?" "Again ?" "?" "?" " ?" "Again ?" "both: ?" "Come to life ?" "?" "Again ?" " ?" "Baby's basketball ?" "?" "And I will bounce along ?" "?" "Look over my shoulder ?" "both: ?" "See if I am wrong ?" "?" "?" "?" "In the dark of night ?" "?" "I lay myself ?" "?" "To rest ?" "?" "Step out of the strange light ?" " ?" "I go to bed ?" "?" "For the blanket's quilted ?" "?" "And I am dead ?" "?" "And I turn to the stars ?" " ?" "Stars over my bed ?" "?" "?" "both: ?" "Come to life ?" "?" "Again ?" "?" "?" " ?" "Again ?" "both: ?" "Come to life ?" "?" "Again ?" "[whimsical music]" "?" "?"