The American People, Volume 2

by Larry Kramer

  And then, perhaps prompted by Rebby’s cry of anguish, Eigo turns his piercing black eyes directly on Rep. Lasagna and says:

  “A government that neglects UC, and thus abets the slow bleed of a large minority of its citizens, has ignored its charge to provide for the common defense and forfeits its right to govern.”

  I love this man.

  Then Iris, our Queens housewife, our Joan of Arc (well, not exactly, because Joan was a lesbian), gets up to speak. T+D has discovered that there are only eighty-four people in new UC trials in New York for ZAP, for reasons Jerry refuses to explain or defend. None of these are people of color or on disability, and none are women. Eigo chimes in: “Dr. Omicidio has testified before this committee about the great success of his UC Clinical Trials Group program. How can a program with so few patients be termed a success? We do not need trials with no patients, Dr. Omicidio. We have no other choice than to attribute the program’s failure to a lack of leadership, to a rigid institutionalized system that absorbs all available funds and then affixes pharmaceutical dollar signs on people’s lives. And by the way, I would be interested in Dr. Omicidio’s definition of ‘success.’”

  Everyone’s eyes are on Jerry. He sits there, dignified, as if they are talking about someone else.

  Next up is Sparks, small, untidy, unkempt. He is obviously nervous—they all are, this is like opening night on Broadway—but he offers something of enormous sense (for him): in essence, that we are here now, and they are here now, and it would save an awful lot of time and stress if we could work together jointly, but that in any event no solution is going to get anywhere without full participation by the affected communities. “People with UC and their advocates must be full voting members of every decision-making body related to UC clinical trials, including the PIs and the various NITS and FADS committees.”

  How about that!

  Again all eyes turn to Jerry. He now looks even more tight-assed. He’s averted his eyes from me for this entire meeting, although I caught him staring at me earlier.

  Loudmouthed activists are the elephant in the room, and no Lasagna or anyone folded into his committee will even look at any of us, even when one of us is speaking.

  As I write all this, as I try to enter our progress into a comprehensive chronology, I am pained again by how long it’s taking for the enemy lines to be breached even after we did all our backbreaking homework. One year earlier we were all dummies; four months earlier we had to have fierce demonstrations and endless zaps to be noticed. Yes, we worked fast. But getting in is not getting there, I am now more and more seeing firsthand.

  Outside on a break, Sparks looks up at the sky: “It’s never going to be this pure and clean again,” he says to Eigo and Iris and the rest of us. “We’re getting inside now. It’s like the age of innocence is passing.”

  “Please don’t get satisfied about such a picayune advancement,” I say to him.

  The final speaker before the Lasagna Committee is the usually quiet Kersh. “We are here to tell you that UC activists will agitate relentlessly until there is a cure for UC. We will agitate until it becomes impossible for advisory committees to ignore us, committees whose members appear to have neither knowledge of nor sympathy for those people who live with UC daily. This is a war as real as any war. Give us the weapons so that we can defend ourselves! Or else.”

  On the way home Gregg, who’s recently appeared from our Boston chapter to become Sparks’s boyfriend, suddenly says, “Let’s prepare a whole fucking treatment agenda for them! We can drown the Montreal conference in copies of it!”

  Even Sparks thought this a good idea, even if it didn’t come from him.

  REP. LASAGNA

  The activists came dressed any old way, almost proud of looking bizarre. About fifty of them showed up and took out their watches and dangled them to show that time was ticking away for them. I’d swear that they must have read everything I ever wrote. And quoted whatever served their purpose. It was quite an experience. Greeting’s lobbyist stopped by and I told him about it after he gave me my honorarium.

  POWER TOOLS

  SCOTTY

  It started with Sparks and me meeting with Dash Snicker at G-D headquarters in North Carolina. He actually showed us around. Fancy digs. We demanded a price decrease on ZAP, which they were going to price higher than any other drug on the market, $10,000 a year. We told him we would be gearing up for demonstrations if they didn’t lower the price. When he and they ignored us I organized a small group of people to come back and invade their headquarters. There were about seven of us, and we even had our own media spokesperson who had a coat and tie on, so we got past security. We called our affinity group Power Tools, we had those battery-operated power drills and we sealed ourselves into an office with screws after convincing a woman to evacuate. It was all over the local news down there, with very sympathetic coverage. It was a story where people were on our side from the beginning. Everybody was offended by the $10,000 a year. After they had to blast us out of their offices, which by the way cost FUQU $10,000 in repair bills, they still ignored us. Snicker won’t talk to us. His mistake. Greeting’s big mistake.

  GAY IDENTITY?

  “Like helpless mice we have peremptorily, almost inexplicably, relinquished the one power we so long fought for in constructing our modern gay community: the power to determine our own gay identity. And to whom have we relinquished it? The very authority we wrested it from in a struggle that occupied us for more than a hundred years: the medical profession. And who has led us into this den of iniquity: Fred Lemish.”

  So writes Cocker Rutt in The Village Vice Gay Pride Issue, in which Fred is once again hung out to dry.

  AT LAST

  A FADS advisory committee approves aerosolized pentamidine. A small, quick community-based study under Rebby and Kotler and Armstrong from Invincible yielded very clear answers about its great success in treating PCP, enough to please Marie Clayture. Take that, Jerry Omicidio, you murderer, you. We could have had this four years ago if you had only listened to Rebby and Rep. Waxman and Michael Callen and had the guts to do the trial yourself. What FADS approval means is that insurance now has to pay for this shit and its administration, often requiring a nurse’s supervision. To this day no one can understand Jerry’s refusal to test it from his first day on his new job, now some six very long tragic years ago. Evil, evil, evil deed, Jerry. Forty thousand dead because of you, Jerry.

  A week later FADS approves ganciclovir infusion for treatment of CMV retinal infections, which have caused blindness in many thousands. This is a big win for FUQU and T+D and young Claudette and Spud and their new Countdown 18 Months project to locate treatments for the most debilitating of the opportunistic infections. Stick this one up your ass, too, Jerry. Another of your evil oversights. That it takes two kids still not out of their teens to pressure and propel this treatment into the world is shockingly shameful on your part, Jerry, old buddy. They paraded six blind patients into Marie Clayture’s front yard and six who could miraculously see again using some stuff Rebby imported from South Africa that FADS hadn’t approved here. Our own gay doc, Dr. Levi Narkey, supervised this trial. He duplicated the South African stuff. This evidently wasn’t very complicated. We couldn’t understand why COD embargoed it from distribution. Anyway, Marie has a kid with Down’s syndrome, who ran to a blind patient and tried to lead him into their house. Marie’s a cold woman but she let down her guard as she caught the two kids in her arms and broke down and cried.

  MONTREAL

  I stayed at this fancy hotel. They let me keep Sam in my room. On the first night I was taking her out for a walk late at night and who should I run into but Jerry, taking his own walk with one of his gay assistants, I can never keep them straight, no pun intended, Drake Something-or-Other, who protected him, as Daniel said they all did, like he was the king of England. Drake took one look at me coming toward Jerry and tried to reroute his boss, but Jerry—and this would be an action of his that never
varied—threw his arm around me in some sort of embrace as if we were old friends and not two blokes who hate each other and are alone with each other, here for the first time.

  “Fred! Good to see you! How are you feeling?” All beams and bonhomie.

  We started walking along, Drake falling a few steps behind. I’d made up my mind about something when I heard my kids speaking at the Lasagna hearing, and also when I took them to a meeting at Bowel-Muck-Shit about getting them to move faster on a drug they had, an analogue of ZAP, and discovered at Yaddah, and one of the doctors asked me as we were peeing in the men’s room, “That Puffington young man, he is Dr. Puffington, isn’t he?” Sparks had been brilliant, rattling off knowledge about their drug, how it was made, how it worked, how it was different from ZAP, how their studies should be set up. I had been looking for the moment to put my thoughts into action, and Jerry by my side was it.

  In T+D we’d been discussing an idea called Parallel Track. I don’t know who came up with the idea first, or if it had its origins in some arcane regulation someone had uncovered, but such a thing would allow very sick people access to unapproved but promising treatments that were still being tested in trials, and allow them to qualify for them because of the extent of their illness or their failure to meet study entry requirements, which were stringent and ridiculously discriminatory. Eigo, Sparks, Scotty, Kenny, Barry, Perry, Kersh, Claudette, and Spud, many of us, me—we’d talked about it at various places but got no response. How to push it to the next stage?

  “Jerry, how can we get Parallel Track into operation?”

  “Funny you should ask. I was thinking of the very same thing.”

  “This conference would be a great place to announce it.”

  “Whoa. Let’s talk about it first.”

  “What are you doing for lunch tomorrow after the plenary? I’ll round up my kids and we can all have lunch.”

  “Let’s do it the day after. Tomorrow is pretty booked.”

  Indeed it is. Ten thousand copies of the FUQU/T+D Treatment Agenda are handed out to one and all. It is a revolutionary document and it will have revolutionary results. It details all the mistakes every division of the government dealing with UC is making, which are many, overwhelmingly many, and how to rectify them. It is the kind of report Jerry should have put out years ago. It is the kind of report someone in government should have put out years ago. Why wasn’t it? Another unanswered mystery to still haunt me.

  All hell then breaks loose. Some three hundred activists—from all over the world now; we’ve made the template; we’ve showed how to do it to a veritable international flood of UC activists—invade the stage before the plenary can begin, and we don’t leave it for the remainder of this assembly. The noise is deafening, at first in support of us, and of the Montreal Manifesto of the International Rights of UC-Infected People, an expanded version of the Denver Principles and equally moving as they are enunciated by people of all colors, all very obviously sick. Gradually, as the audience of some ten thousand realizes we are not leaving, they are less supportive, less welcoming, so we sit down on the stage and around it and allow the proceedings to carry on. The speeches of course are awful, platitudinous piffle, and we hiss liberally when something particularly obnoxious is said. These people—and we now know what “these people” means—don’t get it, don’t understand what we are about. A particularly bland speech causes one of the young men from our Montreal chapter to stand and take off his shirt and trousers. His body is covered with purple lesions. He parades back and forth as if he’s a model on a runway, chanting, “This is what it’s all about. This is what it’s all about.” The rest of us pick up the chant, and dozens of other men remove their clothes to show their own scarred and emaciated bodies. FUQU members pass among the audience handing out Treatment Agendas to those who don’t have them. I can hear a voice or two actually hawking them like hot dogs at a baseball game. “Get your red-hot FUQU Treatment Agenda here!”

  A particularly spectacular display of effective activist disdain erupts when Dr. Elliott Garbantz, of all people, evidently still willing to show his face in public, makes a speech announcing his plan to institute name-reporting and contact tracing. He delivers his speech in both English and French, alternating sentences. I am happy to say that he doesn’t finish. He is laughed off the stage. No one wants either contact tracing or name reporting. Both may be right for public health, but to downtrodden minorities—well, even the public health officials here know these are inhumane tactics to exercise on a patient population that has no rights of defense, no protection in employment, and often no insurance; their names on any list would spell great hardship for them. It may have extended this plague, no doubt it did, not to have this important information, but once again, that is the government’s fault for not protecting all of The American People. Ron, of course, has a chant for us as Garbantz speaks.

  “First he said we don’t exist. Now he wants us on his list.”

  That night, when Sam and I take our walk, Jerry is walking alone, almost as if he’s waiting for me.

  “I’m looking forward to our lunch tomorrow,” he says.

  I proceed to characterize the dozen or so members I’ll bring. He knows who most of them are already. One way or place or another he’s been exposed to us.

  When I call Daniel later in the evening, he can’t believe it.

  “Be careful. Don’t fall for the charm. Remember, he needs you. In a million years he’ll never admit it, but he needs your ideas. He doesn’t have any of his own. None of his PIs have any of their own. He’s also going to get into deep shit with every scientist in America for letting you guys in. You’re in the process of showing them how empty their brains are. Fred?”

  “Yes.”

  “I thought we weren’t talking.”

  “I guess we forgot.”

  “Fred?”

  “Yes?”

  “David’s still missing.”

  “I’m sorry. He’ll turn up. Like before.”

  “Fred?”

  “Yes?”

  “Good work. Congratulations.”

  “Thank you, Daniel.”

  INT. MONTREAL MEETING ROOM. DAY.

  Jerry finishes reading the report. The smart guys waiting for his reaction include Sparks, Gregg, Scotty, Barry, Perry, Eigo, Claudette, Spencer, and a few other faces we’ve seen at FUQU meetings. Fred, who’s watching, is proud of these kids.

  OMICIDIO: Some of your ideas and suggestions for research and testing are interesting.

  SPARKS: They’re better than that.

  FRED: And you know it.

  SPARKS: Why didn’t your doctors realize any of them?

  CLAUDETTE: We think much of what you and yours are doing is wrong.

  OMICIDIO: How old are you?

  CLAUDETTE: Seventeen.

  OMICIDIO: Where did you go to college?

  PERRY: I never finished college.

  SPARKS: I went to Harvard.

  BARRY: You don’t have to go to college to be good at something. I’m an actor.

  CLAUDETTE: I’m going to Radcliffe in the fall. On full scholarship. Fred got me the interview with the woman who’s in charge, an old friend of his. Were you first in your class?

  OMICIDIO: As a matter of fact, I was. Both undergraduate and med school.

  CLAUDETTE: Then why isn’t what you are doing better and smarter?

  FRED: And faster.

  OMICIDIO: I thought this was a friendship meeting.

  FRED: I got us in your door. You haven’t anything better to do. In fact, you don’t know what to do. My kids would be saving your ass. The next steps toward friendship are up to you. We’re very greedy.

  SPARKS: Yeah, we all are.

  GREGG: Very. Exceptionally greedy.

  OMICIDIO: You know my guys will eat you alive. I can’t protect you.

  GREGG: You mean you won’t protect us.

  FRED: You want to destroy us.

  OMICIDIO: Here I thought we were going
to be friends.

  FRED: Put up or shut up.

  OMICIDIO: No shit.

  Much laughter.

  * * *

  We have our lunch. My kids are brilliant and Jerry is speechless. Jerry will announce “his” parallel track program by the end of the month.

  ALL THE NEWS?

  1110 Fifth Avenue is where Push and Clytemnestra Dunkelheim live. Some five hundred of us meet there to march to the New York Truth building on Truth Square to protest the never-ending silence on UC in their wretchedly world-famous and revered and respected rag. Of course 1110 is cordoned off by platoons of police, on foot, on horses, in their sirened cars; there’s even a helicopter. Despite the size and length of the march, not one single mainstream media outlet covers this. Not one.

  FRED CORNERS AN OLD CLASSMATE

  I had a meeting with Dr. Abner Bumstead of Bumstead-Muck-Squish, which we call Bowel-Muck-Shit. I found out we were in the same class at Yaddah, where he didn’t know who I was. The word Yaddah to his secretary got me the meeting with him now. I dropped a few subtle hints that “some of my people have been able to obtain your new drug DID that you are taking your fucking sweetass time getting out to us and we have found a way of duplicating it.” This freaked him out. “Bye-bye,” I said, as he looked speechless.

  SCOTTY ON WALL STREET

  The New York Stock Exchange in September was another push against ol’ Greeting and ol’ Dash Snicker. By now they were under tremendous public pressure to sort out their ZAP shit so we hoped this would push them over the edge.