ROLE OF AIDS ACTIVISTS
AIDS Community Television program #16
originally telecast 4/20/93 (29:00)
UNITED NATIONS WORLD AIDS DAY, DECEMBER 1, 1992.
JAMAICAN AMBASSADOR TO THE UNITED NATIONS:
"And as the global community monitors the rapid spread of mankind's most fatal disease to date, the use of statistics has become the sobering measure of the challenge facing us. In just over one decade, the cumulative number of cases of AIDS reported worldwide, up to July 1992, has risen to 550,440. In the Americas, this figure stands at 291,210, with 179,853 reported deaths.
"Even more alarming is the assessment of those infected by the human immunodeficiency virus, HIV, which causes the acquired immunodeficiency syndrome, AIDS. The World Health Organization estimates that already one in every 250 adults on earth is infected and that, by the year 2000, 40 million people will be infected. This is an international challenge which demands the highest level of united concern and solidarity in action."
BACKGROUND CHANT: "WHEN DO WE WANT
IT? NOW! WHAT DO WE WANT? A CURE FOR AIDS!"
FATHER MARCHING: "We need to do something about finding a cure. We need to do something about finding a cure now. There are too many people that are dying every day of this illness, with a government that has absolutely no interest in helping these people get better.
INTERVIEWER: "What are some reasons why you got involved in this group?"
FATHER MARCHING: "Very simply, I have a child who's sick, and there is nothing worse than a parent having to look and see you've got a sick child, where he's getting no help whatsoever.
WOMAN MARCHING: I'm walking because I lost a nephew to AIDS last year."
WOMAN AT KENNEBUNKPORT PROTEST: "I'm also here because too many friends have died." (CUT)
"Silence = death. But that is my point. Out there, I'll continue to raise my voice as long as I'm able. But in here, in these rooms, these churches, whatever, I will be silent out of respect for Tom and all the others, and out of respect and prefiguring the absolute silence into which I will fall after my own death.
"I pray for the new generation of activists who are trying so hard, and often so brilliantly, to succeed, to keep us all alive. But whether or not they succeed, their emergence, their simple presence--and many of them are here tonight--is a great comfort to me."
"Why are all the fights left to the activists? Why do we
have to do all the fights? Why are--we have to fight your fights?
The ACTG [AIDS Clinical Trials Group] system has produced nothing
of any value. The studies are all the product of second-rate,
middle-of-the-road decisions that aren't controversial.
"And everybody knows that. You all schlep down there three times a year, at taxpayers' expense, and you sit there at these meetings and you know it's a load of shit. You know you could do better work! Why is--why are all the fights left to the activists? Why do we have to do all the fights? Why do we have to fight your fights?"
GARANCE FRANK-RUTA: "Activism has become an integral part of the AIDS political landscape, and everyone expects activists to fulfill their role as activists, and where activists do not fulfill that role, people are disappointed and people also think something is not important.
"Because there was not a big activist response around Rifabutin for the prophylaxis of MAC, the FDA thought it wasn't a big issue, and therefore it wasn't a problem, that they didn't recommend to approve it immediately. When activists went down there and said, "Listen, this is a problem. This is something that we do need to see approved, or at least reviewed more--more expeditiously, you know, and that this drug is as important a drug as ddC and has better data, probably," then the FDA says, "Okay, this is an issue."
"And it's really scary to feel that people are dependent on your doing these things for them to consider something a big issue, you know, because that's not what we want, and when we went to the FDA to talk to them about Rifabutin, we said, "Listen, you have to understand that this is your job, not ours, and you have to do it because it's important and because it's the right thing to do, not because we're screaming at you about it, and that the reason we weren't screaming at you is not because it wasn't important but because we thought the situation was going okay. We didn't know there was a problem."
DAVID KESSLER [FDA Commissioner] : "There's no question we've learned a lot from the activists. We've learned we have to be accountable. What we have seen is a dramatic change in the last couple of years. Look where we started off. I mean, the activists were out there scaling this building, really, I mean, burning us in effigy. Now, they're sitting at the advisory committees, I mean knowing, bringing in an awful lot of expertise, scientific expertise." (CUT)
"When I did my sort of basic science study on myself where I gave up a lymph node and they analyzed it and shoot pictures of it and sliced it up, and what--what it really showed was there's no--I have 600 T cells and I've never really drifted below 550, but there's millions of viruses in my--in my lymph node.
"There's none in my blood; it's almost undetectable in my blood. But the virus is continually generating copies of itself throughout--throughout the disease. There's no latency, and it's flinging copies of itself at the immune system and, for years, the immune system is capturing them, holding them, killing the cells that were infected with them.
"For years this is going on and then, at some point, it collapses. And it may not collapse totally all at once and dramatically. It may be that it's more slow, in a slow way sort of worn down, but the whole immunological tissues of the body, which are not in the blood, that are lymph nodes, are in a very specialized tissue which is devoted towards showing antigen and responding to them and making antibodies and making cytotoxic cells.
"Something destroys it. Something destroys the peripheral dendritic cells that are in the lymph nodes, that hold everything up, and AZT and those drugs aren't going to affect that process at all because if those cells are infected, and it looks like they are, from all the pictures, then they're chronically infected cells that aren't getting killed by the virus, unlike T cells, and that are just churning out copies.
"So the kind of drugs that are going to work against those kind of infected cells, whether they're macrophages or dendritic cells--they're not going to be AZT-like drugs that prevent uninfected cells from getting infected. They're going to have to actually turn off virus replication, and so that they're going to be approaches, maybe, like the TAT inhibitor, the protease inhibitor or some other approaches.
"Now, unfortunately, all those approaches are being developed by drug companies from hell--"
A VAN PULLS OVER FOR ACTIVISTS TO RUSH OUT AND CHAIN THEMSELVES TO THE FACTORY GATES OF HOFFMAN LA ROCHE PHARMACEUTICALS. "Go, go, go. Go out the back door. Go--" SIRENS BLARING IN BACKGROUND.
"Hoffman-La Roche is one of the largest of the international pharmaceutical companies. The company owns exclusive rights to several of the most promising experimental AIDS treatments. However, as hundreds of thousands of people, worldwide, continue to become sick and die, Hoffman-La Roche acts as though they are merely testing new cold remedies.
"For people with HIV, their lives may well depend on the rapid evaluation of the safety and efficacy of new drugs. We don't have time to wait for Hoffman-La Roche to find new ways to bill the taxpayer for their research and development. The company must assume responsibility for the timely study of their patented compounds.
"We demand: (1) that Hoffman-La Roche must immediately provide TAT compound to the NIH and contract research organizations so that the time lost developing this compound can be regained. Within 30 days, the company must also present a plan to fully evaluate this compound.
"Demand 2: Hoffman-La Roche must contribute $25 million toward the completion of trial ACTG 155.
"Demand 3: Hoffman-La Roche must provide the first $100 million in seed money for a Pharmaceutical Manufacturers Association-sponsored AIDS Antiviral Research Consortium.
"Demand 4: Hoffman-La Roche must immediately release a detailed plan to evaluate the clinical efficacy of ddC.
"Demand 5: Hoffman-La Roche must immediately
release the results of the UK and French protease trial. The company
must also find ways to scale up production for clinical trials
here in the United States.
"Demand 6: Hoffman-La Roche must reduce the price of the PCR test by 50%. Hoffman-La Roche must also reduce the price of the TAQ enzyme by 50%.
"Demand 7: Hoffman-La Roche must end its discrimination against women and people of color in the enrollment of clinical studies for Roche drugs.
CHANT: "We die; La Roche does nothing! We die; La Roche does nothing! We die; La Roche does nothing! We die; La Roche does nothing!"
"Because of mismanagement, and perhaps an effort on the part of Hoffman-La Roche to inflate their stocks, they have not developed a drug that might save my life."
ANNOUNCER AT ASTRA PHARMACEUTICAL ACTION:
"ACT UP pulls in front of Astra in rented trucks, blocking employees from driving to work, and pushing their demands that the company lower the price of a drug that can prevent blindness in AIDS patients. The company says it's charging so much because it needs to recover $100 million in research costs.
"Under these trucks, ACT UP protesters are chained so the truck can't be moved."
INTERVIEWER: "Does doing this make it any easier for you?"
BOB RAFSKY: "Yes, it does. Astra is trying to make a killing off of this epidemic. This is no longer a drug company. This is a foreign-owned, criminal enterprise, attempting to make a killing off of my life."
INTERVIEWER: "How long are you prepared to stay under here, handcuffed to this axle on the truck?"
BOB RAFSKY: "Until I feel that I'm going to lose a finger or a toe."
MAN (SHOUTING): "...stop for a minute!
ANNOUNCER: "ACT UP members cave in, coming out from under the trucks, and they are arrested. Some of their fellow activists complain that these sixties-like tactics are passé."
BOB RAFSKY: "We may be passé, but the price of the drug we were protesting under those trucks is coming down. If that's passé, I'll stay passé until I die."
AT THE AMSTERDAM AIDS CONFERENCE IN 1992, A GROUP OF AIDS ACTIVISTS, CARRYING A BAG OF CREMATED ASHES, CONFRONT PHARMACEUTICAL REPRESENTATIVES.
WOMAN: "I don't know how else to make this real to you."
MAN: "Those are his ashes."
WOMAN: "But this is what's left of him, and this is what's left of a lot of people with AIDS. And I don't--"
PHARMACEUTICAL REPRESENTATIVE: "We're giving the drug away free of charge. Why--I don't understand why you have so much problem getting it."
WOMAN: " Michael didn't have a problem getting it. Michael fought for this drug. I just want you to know that this'll--"
PHARMACEUTICAL REPRESENTATIVE: "Oh, so he got the drug then?"
MAN: "No, he didn't get the drug--"
MAN: "--and maybe what you should be thinking about is why so few people are accessing your FAIR program."
PHARMACEUTICAL REPRESENTATIVE: "Umhmm."
MAN: "We want a 50% reduction, and you will hear from us, and you will see us again and again, until there is a 50% price reduction. I would also like to see an independent audit of the 100 million R&D. Sara was at the meeting and she knows (other names?)."
WOMAN: "We don't want to stand here and argue with you about inflated figures of research. We just want you to do what's right because--and have some understanding, as one human being to another human being, not as an activist to a drug company but one human being to another, have some understanding about what all of this means to people as individuals."
PROTEST OF BOROUGHS-WELLCOME AT AMSTERDAM AIDS CONFERENCE WITH GIANT 'DEATH PUPPET' SMACKING DOLLAR BILLS IN HAND. "Shame, shame, shame, shame," "Shame on profiteers, shame on profiteers,"
"Every time an attempt is made to regulate the pharmaceutical industry in America, the pharmaceutical industry threatens that they will have to completely close down shop, that it will destroy their business, it will destroy this discovery of scientific, essential scientific biological research that has saved lives, and they cannot in any way let that happen, and--and that is still true till this day, and the example we have of that is, pharmaceuticals won't open their books to discuss the pricing of life-saving therapies, and as recently as the prior--in the Prior investigation, the Democrat from Arkansas, investigations for--in the Committee on Aging into price gouging on drugs."
"The pharmaceutical manufacturers have done nothing except, "Don't control our prices. Don't get in our business. Let us decide that we're going to voluntarily restrain our prices," and, as of yet, they've not done it. The truth is that what we've got to do is--is find a solution to these very costly drugs that are rising beyond the cost of inflation, three, four, five times, and we've got to see to it that the elderly people, those who are most vulnerable out there, and also families across the board, are protecting--are protected in this huge price abuse thing of Mr. Mossinghoff and of his--of the group that he represents."
"Tax-enforced price controls--price controls simply don't work in the United States. They're so foreign to our free-market system that I don't think they'll be enacted."
GOV. CUOMO: "We have to reduce the cost of drugs, the cost of the administration of the health care system. Trillions of dollars are involved here."
AVRAM FINKELSTEIN: "The NIH AIDS research program is a shambles. It's a lie. It's not going to save any lives, and they've got to change the whole thing. In basic science, when you're trying to discover a cure for something or trying to, you know, get involved in the true discovery of science which is unencumbered by whether you're going to make money out of--at the end of the day, you have to ask a series of questions, and you cast the net out very far.
"The NIH AIDS research effort never did that. They locked in immediately to some theories that were forwarded by insiders, by people inside the National Cancer Institute. They were subscribing to beliefs, theories and current trains of thought that were sort of sexy in the science, in the world of biomedical science. And, p.s., what's considered sexy in the world of biomedical science is very much influenced by what's considered by pharmaceutical companies and biomedical research entities that pay for these--the results of this research.
"So everything sort of funnels back into that big question. We're in America; it's capitalism, you know, and there's money. The principal investigators, who are the crack, sort of hierarchical best-of-the-best team in terms of AIDS research at the NIH, and who make decisions over which drug should be investigated--easily over half of them get consulting fees from the large pharmaceutical companies, like the big three pharmaceutical companies--Hoffman-La Roche, Burroughs Welcome, Bristol-Myers.
"So the people who are getting money from the pharmaceutical companies are also making decisions about what drugs should and shouldn't be decided on, and the lion's share of the drugs that are being investigated in the AIDS clinical trial groups are Burroughs Welcome drugs, Hoffman-La Roche drugs, Bristol-Myers drugs, so--get the connection?
"Science is not self-policing and altruistic and without conflict of interest. It's not the case in America, no matter how goodly individual research scientists are. In the political and social context of America, it is not without conflict of interest.
"There's only one group that can and will study the conflicts of interest in the NIH Aids--the Federal AIDS research agenda. That group is AIDS activists. That's why we feel it's essential that we teach ourselves, that we teach each other what the realities are."
DR. MICHAEL MERSON:
"Activism has been so important in the fight against AIDS, in getting drugs available, in getting information out, in getting the right research done.
"We've learned, in AIDS, the importance of involving HIV positive people in the fight. We've done things with AIDS that are going to set the landmark for how to work with many diseases throughout the rest of this century and into the next century.
"I'm Dr. Michael Merson. I'm Director of the World Health Organization, Global Program on AIDS. We've just released some new figures on the status of the epidemic. In the last six months, another one million persons have been infected with HIV, the virus that causes AIDS. That's one person every 15 to 20 seconds. That means that the total number of people infected worldwide is now between 11 and 13 million.
"Of the one million adults that have been infected in the last six months, almost half of them have been women, but when you realize that one in three sexually active adults in some cities in East Africa and Central Africa are infected, when you realize that 70% of female sex workers in some parts of the world are infected--these are frightening numbers. When you realize there are going to be 10 million orphans, worldwide, by the year 2000, children whose parents have died of AIDS, you start to get some idea of the seriousness of the problem.
"The top priority, worldwide, must be prevention since we do not have a cure for this disease. What we must emphasize is safer sexual behavior. We know all we need to know to prevent this infection, if we can just get people to adapt safer sexual practices. That means abstinence of sex, which is not very common; more likely, it means mutual fidelity or, if this is not possible, using a condom.
"There's no question that condoms work to prevent transmission. They need to be promoted in every society. It's a matter of life and death. Each society needs to find a way to do it, but they must do it--that's what's important."
C. EVERET KOOP:
"How can you teach a junior high school kid about AIDS and
how to prevent contracting it if he doesn't know anything about
DOLORIS AILING: "Some of the language in the glossary, such as the explanation of 'condom,' the explanation of a homosexual, the explanation of 'homophobia'--and I don't see the word 'heterophobia' here, which is the fear of the traditional family prevailing in this nation--they talk about dental dams, and I'm a married woman, and I see you squinting; I'm a married woman with a 22-year-old son, and I had to read a fourth grade curriculum to find out that a dental dam is an oral condom used in oral sex."
INTERVIEWER: "But you believe this shouldn't be taught till after the eighth grade?"
DOLORIS AILING: "My God, it shouldn't be taught at all. It talks here about oral sex involving the anus: use a dental dam for that. They're talking about nonoxynol-9, KY jellies, foams and gels to young children. Now, I know the argument is they're already sexually active. Well, I--"
INTERVIEWER: "Many of them are."
DOLORIS AILING: "Well, many are."(CUT)
TEENAGER WITH AIDS:
"If kids don't use a condom, if they don't listen to me and just trust me that I know what I'm talking about, they're going to go through hell. Look at the size of these tubes going straight into my body, you know. This is a big tube. This goes right into your ribs. And it's a lot of suffering. (CUT)
CARDINAL O'CONNOR: "We have never quite convinced ourselves that--we have never quite preached adequately the tremendous potential in human suffering. (CUT)
MAN: "Our view is that homosexuality and lesbianism are the moral equivalent of drug abuse. They are self-destructive practices, quite on a par with drug abuse. Half of the homosexual males in New York City are HIV-infected, just to cite one statistic.
ANN NORTHROP: "I hardly know where to begin, but this accusation of equivalence to drug abuser and this talk about disease is some of the most disgusting, horrible language I've heard in my entire life.
"The lesbian and gay community is a diverse, moral, intelligent, law-abiding community that has been hit with the tragedy of HIV infection, as have many communities in this country and this world.
"The gay men who have HIV, in the vast majority, got it before we knew there was such a thing, and when we did find out that HIV existed and we figured out that there was such a thing as safe sex, and gay men started practicing it, the HIV infection rate plummeted in the gay male community.
"The gay male community have been heroes in this epidemic and have tried to teach the rest of the world how to protect themselves and how to treat this as the alarming epidemic it is, but since the Catholic Church puts morality ahead of life, and insists that it is a greater sin to wear a condom than to protect one's life and protect one's self from infection, more and more men and women, heterosexual, monogamous, are being infected in this city and throughout the country and throughout the world.
"The country and the world would do well to look at the example of gay men, who have been heroes and very farsighted in this epidemic." (CUT)
DEMONSTRATION AT THE BOARD OF EDUCATION, New York City.
"We hold the Board of Education accountable for the lives of students in New York, and they have been irresponsible with the lives of students in this city. There is a long history, going back to their early opposition to the HIV and AIDS curriculum, which was only passed due to incredible efforts on our part and the part of other AIDS educators throughout the city.
"Certain members of the Board, including Irene Impellizari, Michael Petrides, have fought us on condom availability, making condoms available to students in the school. Then probably the most flagrant thing that happened this spring was the passage of the morality oath, which requires AIDS educators coming in to teach students about AIDS to teach that abstinence is preferable to safer sex. Now, this is just teaching kids about AIDS using fear tactics.
"Students need to know all the information possible to make an informed choice about how they're going to protect themselves from HIV infection and these people, because they're in the grips of the Catholic Church and various other Christian fundamentalist groups, are trying to impose religious dogma in the public schools.
"Because they have people already so terrified about AIDS in this country that they're able to mobilize fear, and then, at the other hand, they're preventing education. So they have these two things going, saying, "These people are going to kill you, and don't let them come in the schools and don't let people educate about AIDS." So those two things, working together, is like a formula for death, you know. It's to create--create a climate where, one, people want to kill us because we're seen as carriers of disease, and two, create a climate so we can't even prevent the disease with the young people." (CUT)
YOUTH WITH AIDS:
"I don't really think that there is any thoughts going from AIDS being HIV infected, and youth, as a combination. Reality shows that youth starts to be risk factor #1, and a part of the fact that we see youth and the learning process, and if you want to teach someone, you better start early, and things like that."
YOUTH WITH AIDS:
"I heard that I was HIV positive when I was 16, and I've been diagnosed with AIDS when I was 20, I think. Now I'm 23."
"Teens are dying of AIDS, and it's important that we educate them about the dangers of having unprotected sex."
INTERVIEWER: "Do you think the city is trying?"
"The city is not doing enough because teens are dying every day. Every seven minutes somebody dies. It's got to stop!"
"I'm here for my sister who just died in October also, and who--my brother who's lying in a hospital dying now, so I need your support also, please. (CUT)
"I'm pastor of the First Corinthian Baptist Church here in the city, and any time that our young people is so concerned about this terrible disease, AIDS, that they reach out to us for help in educating them and to alert the officials that this is something dangerous, (nothing to play with?), but asking for a solution, and I think when they reach out for us, we ought to be there for them." (CUT)
INTERVIEWER: "What do you think of demonstrations now, and direct action?"
"Yeah. I kind of--I kind of like it. I just hope they get--they get the message, 'cause, you know, we're trying our best to--to educate them." (CUT) (END)