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San Francisco October 6 the demonstration to demand more money for the battlefield. Feet of pavement. It's a battle for the high ground of an epidemic. From the outset he's ations of genocide that affects our lives not choose to ignore it. It's not going to erode her remark about some of her aids is avoidable. Ninety nine percent avoidable. Is it is it fair for me to engage in intervene as drug use or unsafe sex practices and get infected with the disease and then expect somebody else to assume the responsibility for my care.
Hi I'm Randy Shelton. When I started reporting on AIDS in 1982 it was easy to tell the good guys from the bad guys. That was when doctors were fighting for money to do rudimentary medical research and people with AIDS were fighting knee jerk harassment and discrimination. Things aren't so simple anymore. We count cases in the hundreds of thousands now and the trauma of AIDS and so many lives is giving new immediacy to moral dilemmas like abortion euthanasia and privacy as the issues grow more complex. It's a lot tougher to figure out who's wearing the white hat. Ironically the rhetoric of AIDS activism these days is often polarized and simplistic. For example voting for a baseball stadium is not usually equated with committing murder. But a recent demonstration in San Francisco some members of the AIDS Coalition dilation. Our staff said they're voting for a new baseball field in the city that would divert money from their parents they don't like with baseball because Dack
are aware that the demonstration was supposed to dramatize act that's our jam. We are not experiencing genocide anymore. This is genocide. We are being good. But the 250 activist who turned out at the federal building were met by more than 150 city cops a moment act after police liaison identified himself. He was arrested in June. I asked him why was it him and what he said to me you faggots are more dangerous then than crack and heroin dealers. As evening fell the demonstrators marched up Market Street in the Castro here. The confrontation turned violent. That was a point in which I first saw an officer break ranks and raise his club over a head and simply club a passer by some of the standing there on the shoulder playschool you convinced that someone should be standing on the sidewalk doing nothing was facing
a threat of deadly force from a member of the service. Because by the time the skirmish was over the body count reached riots proportions. Forty nine arrested nine injured and 35 reports of police violence act up called for police chief Frank Jordan to resign. The gay community called for an explanation on all of that and you do yet. We're going to. That was a major shake up and investigation of top police brass. But the cops weren't the only ones whose tactics that night came under attack. The joke that runs around it was act of grow up you know in this city. We've gained a lot of respectability since the 70s in San Francisco we've come quite a ways. And with ACT ups not just act ups but with some
of their more responsible behavior we're losing their respectability with the people in the city in the situation such as what happened on Castro Street. I honestly believe that act out provoked the whole thing cause it's the number one word that everybody I know uses responsibility to try to be more responsible. Think about the consequences. It amazes me that complaining that we're dying is perceived as a responsible irresponsibility to me is letting 45000 people die of a disease before you say the word AIDS on national television when you're the president of the richest and most powerful country in the world. That is a responsible and that is murder. Yet the act of the same almost any tactic any protest is justified to force aides to the top of the American agenda. They've turned the disease into a political movement and demanded attention. You're not going to do it by writing letters to the editor. And that didn't do it because people tried that.
You going to do it by seizing a platform by jumping in front of where the cameras are redefining the agenda. The activist burst on the national scene in October 1988 with a protest that closed down the Food and Drug Administration headquarters in Washington D.C. Their demand for quicker government approval of drugs was nothing new there militancy was it caused the government to like sit up take notice and go wow you know these people are serious. They're not going to sit back we're not going to be good Germans. And just wait for whatever happens to happen we're going to take charge. The next act up to Prime Minister. Now they've repeatedly accused drug maker Burrows welcom of price gouging on its antiviral drug AZT. If I make $14000 a year and I have to spend sixty five hundred dollars on a full dosage of AZT What does that leave me in this
city to spend on rent and food and utilities. And they have also thrown up picket lines accusing insurance companies of shirking their moral duty to pay for treatment. Everyone has the inalienable right to get adequate healthcare no matter who they happen to sleep with no matter what color their skin happens to be or what gender they may be. And it's unethical to deny it based upon those issues or whether you can afford it or not. Backed up does more than demonstrate once they get the attention of policymakers. Terry Sutton was an AIDS activist who negotiated to change the rules of government run drug studies. At the time. AIDS patients who were losing their side had to choose between taking an experimental drug to prolong life or taking one that might save them from going blind. But Sutton got the ear of the National Institutes of Health in our own program and we're discussing it actively with the people from the FDA to say let's just call a time out here and see if we can conduct these clinical trials at the same time that we can make the drug available to those individuals like I spoke
to in San Francisco who want to be on the drug but don't fit into the clinical trial. The FDA changed its rules. The activists have put signs on. We're doing direct clinical trials of new AIDS drugs at San Francisco General Hospital. The way clinical trials have been done certainly the FDA involvement has changed the willingness of the drug companies to do things in different ways has changed and in large part because of all the groups like actor and some respects the activist have become part of the establishment they continue to attack before conducting this public forum introducing the new anti-viral drug guy. The Bristol-Myers company was careful to ask act out members to help design the drug's clinical test. I do not believe it would be in the position of having this form tonight were it not for the perseverance and the hard work the backed up will a great deal to them and their work on behalf of those of us living with HIV disease. I'd like to say a thing
or two. Down there are tactics demands that any effort in the fight against AIDS be held to a single standard doesn't stop the dying and doesn't do it now but through their own guerrilla tactics hasten an end to the suffering and die. Some recent actions have prompted complaints that the activists are flunking their own moral test. In January of this year a group called Stop AIDS now or else comes down the Golden Gate Bridge during morning rush hour declaring that the public is duty bound to join their fight. There's a more with her to to deal with this. This is an epidemic. This is genocide it affects our lives every day. You cannot choose to ignore it. It's not going away. We will not let you ignore it. But the demonstrators discover that the
captive audience doesn't always want to listen to their sentiment. I have to go to work to take Carrie to patients and I'm an hour late because this demonstration I'm not happy. Are you a doctor. Yeah I'm a doctor takes care aids patients people get pissed off when they think about things like that and they don't think about the AIDS part what they're thinking about all of those radical fairies are out there causing trouble again. I think it doesn't really people and I think it's counterproductive. That's right I said I think it's the right message but the wrong target. Don Don had the same group returned in September to crash the gala opening of the San Francisco Opera with the rich and the powerful were diagnosed with AIDS. What would they do with they have access to treatment where they have doctors appointments with they have health insurance. I believe they would. I believe they would be at their congressman's office and demanding something and yet they don't demand that for the citizens of San Francisco who do have AIDS. Once again the message was lost in a torrent of hostile criticism.
Yes they were less good than the other believed that there was someone sitting in the audience who in their pocket had a cure for AIDS and was waiting for these people to show up to say oh now that you're here I'll give you the cure I can understand that but that wasn't the case. I am like a person. HIV. Positive taking nice. Teeth. And I'm dashed by that action type thing. The last great basis for. When you can't do what you want to do you get angry. And for eight minutes the people in the opera felt how frustrated people living with AIDS and their friends have felt for a decade. Yes crisis knows no borders. Last June act up took over the opening ceremonies of the international AIDS conference in Montreal and repeatedly disrupted the world's largest gathering of AIDS researchers and public health officials. We're educating the public and providing personal risk reduction counseling and referrals for those whose behavior put them at risk of infection
was people with a need to be given a voice in policy making decisions. And if you're locked inside of your conferences and your meetings and your speeches were going to be there anyway. That threat hangs over the next International AIDS Conference which will be held here in San Francisco this June. The last thing conference planners want is a repeat performance of montréal. So act up won't be closed out. In fact they've been invited to conference planning sessions. At the rhetoric of the AIDS militant seems hysterical at times. It's in keeping with the history of AIDS. Fear has been the subtext of this epidemic. To understand today's moral quandaries about AIDS you have to understand their roots in history and hysteria. It started officially in 1981 the federal Centers for Disease Control reported a scattering of mysterious cases of pneumocystis pneumonia and campuses or coma. I didn't know anything like APIs he Serco I started at the hospital in 1981
and there was a patient before any publications had come out so we were really in the dark and here we were. Medical establishment medical medically trained people. Being confronted with a group of people with a disease that we didn't understand with a lifestyle that we didn't understand. That was really quite different from many of our own. Within eight months of the first reports two hundred fifty one Americans were known to be sick. Ninety nine had already died. Our best guess is that it's somehow related to the gay lifestyle bad. Whether it's whether it's drug abuse whether it's sexual activity. We're not completely sure at this time then. And December 1982 a San Francisco infant who had had a blood transfusion contracted AIDS. Now it was clear that AIDS could be an infectious disease and that no one was safe. I'm taking care of these patients they have an infection it's a virus we don't know how it's transmitted. And
one of my blood studies makes me worry that I might have some of the same changes that I'm seeing in my patients. And at that point my wife's an internist she was taking care of some AIDS patients she was pregnant and. For the next year and a half or so I lived with that anxiety with no way to prove or disprove it. I think that anybody treating AIDS in the early 80s that was not afraid that they were going to catch the disease from treating their patients. It would have to have been brain dead and I think all of us stayed involved with yes some personal fear but also the incredible challenge the disease provides to a physician. They were telling us that it was sexually transmitted. We didn't believe that there were a couple things going through our minds like when was the last time you ever heard that cancer was contagious. That's crazy but the public didn't think so. In June 1993 Andrew Small resigned from a jury after its other members refused to
be in the same room with him the same day Smalls friend Ray Castro had to leave the site of a local TV talk show when studio technicians refused to pen a microphone on him. He'll be on television in six and I can't be in a court room. I'm nuts. You know we're going to get restaurants gayo and restaurants did lose business but it didn't and their doctors refused to treat AIDS patients. San Francisco police and firefighters wore gloves and mask when resuscitating anyone they thought might have AIDS. Today I have ordered the closure of 14 commercial establishments which promote and profit from the spread of AIDS. Closing the bathhouses in 1904 was a last ditch effort to keep AIDS in check. But for many gays it seemed last an attempt to protect the public health. In a move to restrict their own civil rights. I was mostly afraid of government intrusion into people's lifestyles. I was just afraid that they would be. They
closed their eyes and when they realized that wasn't going to work perhaps. Well that's close to Castro. That was a very very strong fear in fact strong enough that people who would have supported the closure of the bath houses backed off. It was again one of the reasons why I had hoped the gay community members in the gay community would do it themselves. I failed in that attempt but that was the big fear there obviously the fear on the other side and something that I live with constantly was I allowing people to become infected that could be protected from that. In July 1995 the dramatic news that this man had AIDS made the country fear that the disease was out of control. When Rock Hudson announced that he had AIDS I think that shook a lot of people into even a fear that they might not have had by gosh this is something that if Rock Hudson can get it then you know maybe I'm at risk. Fear touched every corner of the nation. By 1985 half the
country believed falsely that you could get AIDS just by being around someone who had it. It was yesterday at the Atlanta airport when Delta Airlines told a San Francisco bound passenger to get off the plane he had already been seated on close to it I believe it was come up to said I would have to leave the airplane because. I was. OK so you know I mean I would stay put. Minister. This is all that remains of the raid family home in Arcadia Florida. The small wooden house was gutted by fire last night. A family that has been ridiculed and shunned because of an age hysteria in their hometown lost everything. One young man who had a family who was beaten up several times broken ribs many abrasions and during one of these attacks he turn of these people said what are you doing and they said we're trying to kill AIDS. And when we finish with you we're going to go ask your wife because she's probably infected. A friend of mine recently wanted his teeth claim making the appointment. He felt
it was his ethical duty to inform his dentist that he was HIV positive but that he found no dentist willing to see him. In the end he had to go to a dentist whom he had not informed. The health care workers are afraid of needle sticks or any contact with a patient's blood. This issue exploded a few months ago here at San Francisco General Hospital when orthopedic surgeon Lorraine de resigned because she was afraid the risk of infection was too high. The government and the Centers for Disease Control has not been up front with these things. They are downplaying the risk to health care workers because they're afraid of health care workers know the risk they won't want to take care of AIDS patients. They're absolutely right. I'm not saying we shouldn't take care of AIDS patients. I say don't say well you're a doctor you have to take the risk. Help protect us if you don't you will have no more health care workers. They wants impenetrable protective clothing. And she wants the legal right to test patients for range.
We're still seeing people who are fired from their jobs. Who are just you know it's going to mess up your insurance no matter what it's going to mess up your insurance if if you have the test and if it gets in any sort of record. Why is it that I don't have the right to know about only this one disease when I have the obligation to know about other diseases the patient has. Why is it that the patient's right to confidentiality supersedes our right to stay alive. Thought the patient's right to stay alive have treatment and then depends on money. I'm just trying to get as much of the drug into my lung as possible because I do not want to have another bout of you know this is just ammonia. Ron Brown needs to inhale aerosolized pentameter in once a month to stay alive. But when he submitted the bills to his insurance company it refused to pay because the treatment was not yet approved by the Food and Drug Administration.
When I got sick with new assisters pneumonia the anticipated life expectancy at that point in time was six months. My physician had the foresight to put me on aerosolized contaminating treatments prior to it being an approved treatment regimen. I'm now in my 22nd month. I'm glad I did what my doctor wanted me to do and not what my insurance company wanted me to do or what the FDA wanted me to do. Doctors often prescribe new AIDS drugs in combinations not yet sanctioned by the Food and Drug Administration's Carse's bureaucracy and insurance companies often won't pay for treatments that fall outside FDA guidelines. There's a dilemma that you face when you when your job is to pay these costs for these experimental or more highly priced drugs that may or may not solve the problem. There has to be a standard acceptable
medical practice and in this area it's developing so rapidly that it's difficult to say that this is going to work or this isn't going to work. So the insurance companies and the contracts fall back on and rely on provisions contractual provisions that the the plan the benefits payable have to be for. Generally accepted medical practice. What does he need to do to make application for his disability pension benefits. What are the next steps. Volunteers part time and aides benefits counselors a nonprofit group that helps AIDS patients collect money from their insurance companies. You know I have to be really honest what disturbs me about all of this is this guy's been out of work for almost two years and you know what. Or does the whole community just benefit from the issue of responsibility can be. I mean what's responsible for ages two different things. Blank fought his own insurance company who eventually agreed to pay for his been Hamady but keeping just one person with AIDS alive for a year can cost ten thousand dollars and
medication doctors fees and hospital costs and the 1990s caring for America's AIDS patients want to up a bill of 10 billion dollars a year. I mean I want to survive. But do we get to a point where we decide that it just isn't economically worth it. Certain people live the job of the insurance company isn't a moral job it's a contractual job they enter into an agreement with an employee or an individual or employer who's providing health care coverage and they have to fulfill that contract. Russell shop story is typical. His insurance company claims his pentameter treatments though FDA approved are physical therapy and therefore are not covered by his policy. The company won't explain further. I've got no straight answer from anybody. And one department will switch one to the other department. It's just been going on for so long and it's so. Crazy and so frustrating.
That it's easy to want to give up. It's all I can think about is how do I get these people to pay this. What do I have to do. Do I have to go right to fly over there to Philadelphia and and go in there and start screaming at them. If they do in fact do not pay for that this whole bill for aerosolized and Tammy and that's that's mine. And I don't know how I'm going to pay it. I have no idea. Yes there are individual anecdotes and anecdotal situations that we've all heard about where the insurance company didn't pay or they argued or but I think by and large that the system functions and they pay their claims that's when the system is manipulated and people try to squeeze something out of it that they're not entitled to. Under the present system that that we have a problem insurance company has no way to operate other than contractual. The problem with HIV disease is that. Often times the treatment regimens change so quickly
that the insurance companies can't keep abreast and so often times a physician will recommend certain courses of treatment. The insurance companies I'm familiar with will deny that particular treatment for years and surance companies have required blood tests to screen out people with preexisting medical conditions. California law forbids the use of the HIV blood test and health insurance applications. But companies can test for other conditions usually associated with a. You have to remember it's the it's the job of the insurance company to avoid risk if it can. You know we've been able to screen for diabetes and heart disease a mental illness hypertension everything for years. Why should aids be different. Here I am an independent agency of the gay lesbian community and some of them feel that it is a right owed to them by the insurance company cannot do that. And I have to lay down the ground rules farm and say they can do whatever they want to do if they decide to change their underwriting regulations to exclude anybody who's had a
sexually transmitted disease in the last 10 years. They can do that if they decide 12 years they can do that. They can make any decision they want with guard underwriting insurance companies make money by taking more in premiums than they pay out in benefits. If too many people they insure get sick thank their income by raising premiums that can have a dramatic effect on their policyholders. Like many businesses just desserts in San Francisco provides health benefits to its 200 employees. But when two people are diagnosed as having AIDS the premiums doubled to more than $300000 a year. How much more are people going to pay for products than just desserts so that I can continue to pay the increased medical costs of our insurance vs. if there's somebody else the bakery down the street who may not provide any medical insurance. They can charge a lot less for their product.
Than I can. Even start charging your employees. For. Part of the medical plan. Which is something. You still haven't done. And that they may become. Pretty soon. Which in a sense is lowering people's pay. Which I don't want to do. Most people get their insurance through work. But get too sick to work. And you can lose their pension. On the short term scale while you are working you have coverage and the system kind of works. But once a catastrophic disease hits you hard over a period of time eventually you are going to end up on welfare. Period end subject. Comes back to the taxpayer. And to the taxpayer pay. Always start looking more and more like oh. That sounds good. To. Hear back. Granted I figured out one last year that I spent fourteen thousand dollars on my medical care. Everything I had in the bank and every whatever little income I had went into medical care. Now I have since
I have since poverty down so that I'm eligible for Medicaid so I'm hoping that at least my easy t will be will be covered. But otherwise I'm dependent on my family and my friends and my lot. On my very limited income so I get to watch everything because I tell my fam I ran out and my bills like $350 me like 250 that's the eat on it. For any share costs that I have to do with any medicine or. If I can't get somewhere if I take cab some days because I can't get enough. And so yeah the financial thing is a big worry. The next epidemic we're going to see is an epidemic of AIDS among I.V. drug users. Women and children from the inner cities. Those people don't have private insurance and in the end harsh society will have to take care of that under some program the taxpayers worry comes from the viruses on check spread among minorities especially I.V. drug
users dormitories. To reach. Into the education. Problems right. She's an I.V. drug users for as long as I can remember she was. As far as I know she was those you can drop to the day she died and we took her bed apart we found. These needles there. And then later I think about the people that she was sharing needles with if they knew that she had AIDS. Are they infected with AIDS I think. Yet and still passing the states rights around. And it's really scary to think about it really is really scary. You know let's change. One answer to this crisis creates and political dilemmas of its own. Making sure drug users could get clean needles so they don't pass around the virus by sharing syringes that he's given it's ok it's ok to shoot heroin problem that's the problem.
Problem when they get to that needle they want to throw down some kid go right across it. Do not stop it. AIDS is avoidable. Ninety nine percent avoidable is it. Is it fair for me to engage in intervene if drug use or unsafe sex practices and get infected with the disease and then expect somebody else to assume the responsibility for my care. And San Francisco the health system is strained to the limit. And the next four years the city will need to pay more than 30 million dollars a year on health care. This additional cost I think has to be viewed as beyond even the resources of this city which has been you know extraordinarily generous in fighting the AIDS epidemic this has to be federal costs. So far the federal government has not come up with the money. This year the federal budget for AIDS was 1.6 billion dollars 1 percent of the federal health budget. Even though the Department of Health and Human Services asked I really don't know what people have to realize is the cost of AIDS is not going to go away. It's there it's a given. The question is
who's going to pay for it. And people are scrambling now to avoid that financial responsibility. The right thing is to care for sick people. But that's easy. You can have the right thing is to care for sick people in any way that they need to help their suffering to hopefully get them well. Unfortunately we in this society have developed this incredibly complex byzantine system of trying to pay for that and I think AIDS has pointed out that that system may have worked fine in the past. It's not working now. How to pay for treatments is a political dilemma but an AIDS diagnosis also creates intense personal dilemmas. If a pregnant woman finds out she has AIDS should she have a child or an abortion even when the children of people with AIDS are not infected. They are likely to become orphans once their parents die. And most of them will be black or Hispanic or friends. In a society
that doesn't do much for minority children. If a child has AIDS home should the parents tell. That was an easy choice for the parents of Brandon or rock. When Brenda was 5 years old and John Paul the second singled him out at a special mass in San Francisco. You must've known the works and I didn't have to really. Wrestle with that decision but it who did tell you when to tell them. People found out in a very positive way. Among its friends. Never mind I'm. Becoming. Kind of. Gift or rather vague. But. I. See people would. See people like you. Go home when Kitty really. Did start. Full You know with a. Unique unicorn places. You
know. You don't need friends acceptance by its date. It's not typical of most children. They're. Trying to tell everybody. That I. Made so. Little time to say. Angry parents fight against letting a human feel York boy with AIDS in the local public school. Nor that I want to feel your boys infected with the AIDS virus are banned from school in the face of community hostility that shortly after they were readmitted their home for the last night. When I looked at that as well so do you. Get me some fire started in the show's veteran British fashion maker there's no way I'm going to associate whether I personally will tell my child if someone hits will you just stay away from the family left town. I cannot subject my daughter to the possible
ridicule. And discrimination because of the way children with AIDS have been shunned and mistreated. This woman has decided to tell almost no one that she and her daughter are infected. Not even the child's babysitter or daycare center. While I did lose my hose when he passed away from the disease. And we had to cover that up with you know a different diagnosis or something else that he he died from. I don't want her growing up with the stigma of this to cease. There really is no duty to inform school churches daycares friends with. A foreigner as a nurse in the pediatric AIDS unit at Oakland Children's Hospital. She says that children infected with the AIDS virus do not pose a threat to other children. Did you receive now. People often say well there always could be a first time and that's true. There could be a
first time. But in all the years that we've known about this disease there haven't been any documented cases. Why do. You. Think. Is a point you might try some similar cause their brother was dying of AIDS. She refused to let her children visit them here but one of her joy. Playmates. She thinks she has a right to know. I think it's got to be a very hard decision for the parent but I think they they should tell the truth and let other people make the decision whether they want to have their child exposed you know transmittable or not. They don't know even though they say it can't be. I I haven't heard any guarantee. Most of the children who are HIV infected today got the disease before they were born from their mothers who many of whom gave birth without knowing they were HIV positive. Pediatric AIDS specialist Dr. Diane Warren would like to change that.
My my personal belief is that all pregnant women who live in areas where there is a high prevalence of HIV should be tested. I think they deserve to know whether there's a positive and they deserve to know whether their babies are fetuses are at risk for infection. Will that happen during the next year. I doubt it. Many women won't consent to testing. They don't want to know if they themselves are sick but that robs the children of the chance to get treatment if they are infected with HIV. I can't think of another infection where we tiptoe around and try to avoid finding out whether someone is infected. We want to know especially because we have potential treatment. We want to know the patients infected so that we can take care of them. When you see a child all of a sudden have a weight loss or you see a child whose lymph nodes were not noticeable to you on your last visit. But they turn their head to reach for something and you can see them now. You kind of like slapped in the face again with the reality this child is sick and this
child will die. What. What's this what's this. That reality is for social workers. Jerry Ditto Peaveys to question whether HIV infected women should have children. Yeah I see the sufferings that these children go through when this is something that you should return to the foster families go through or will go through. My immediate response is No they should not have any more children. Many of us have these feelings of boy I wish we could do something and stop this woman from continuing to have babies that are infected because it's not fair to the kids. So sure I do have those feelings sometimes but in a general kind of sense I don't think that we have the right to control people's behavior or their right to reproduce. Nor use pregnant for the second time she contracted HIV five years ago when she was an I.V. drug user. But she never suspected it until she was six months pregnant with their first child. They told me my baby was going to be born with a he would die within a
year and that I might live another year. And my baby is negative. He was not born with AIDS and this has been two years and I'm still healthy. Every social worker and every doctor that we talk to to try to get her have a cube start. And we just we didn't feel it. Oh no we didn't feel like that was a correct way to handle the situation. Although they are practicing Catholics Laurie and Paul decided to use contraceptives. After the birth of their first child she became pregnant anyway. The new baby has a 70 percent chance of being healthy. And if I have an abortion he doesn't have any chance. Oh. That's why we decided to keep this one. I'm really positive that. This baby's going to be fine. I'm really positive that if it's not babies I'll be fine. I guess I'll have to deal with that later. If it's not and I guess I'll have to deal with
that later. I guess sometimes better than no time. Last year a very close friend of mine in the last excruciating stages of AIDS made an unusual request. He wanted me to be on hand when he killed himself. That was the first time I had to weigh all the moral and legal issues of suicide in a very personal way. But it was not a new issue for me. I've had more than a hundred friends die in this epidemic and I'd estimate that about a quarter of them were suicides. Usually they didn't kill themselves out of despair. The experts call it rational suicide. A well thought out decision to die. After weighing the benefits of life versus death. But those thinking it out make it warm. That's a question thousands of Americans are asking themselves with each passing day of AIDS. Listen to the diary of Keith sparks from August 1996 of the moment I've got splitting headaches. That means arm pains throughout my whole body.
I'm done trying everything just preparing at my therapy treatment at 4:30. Starting getting very sick. I was six. Growing up at seven. And little more than a minute to get anywhere with. Your thoughts for the biopsy left. Suicide line here just thinking about suicide they say life is not good. When I say live right now I just want to. Clear this 11. Three years later sparks is still alive. He and Gerry Anderson his lover of 10 years are both fighting the AIDS virus but they don't intend to die from AIDS. They wanted to commit suicide together when one of them is close to die.
But. I've caught myself fantasizing about you know how we're going to do it when we're going to do what a relief it will be. Yet because of this insurance papers for the doctors. When Keith was near death. Jerry took care of it at that time Jerry was not yet sick. I came to the conclusion when Keith was a near death that I didn't want to do well without him. At that point that was a decision I had made and the psychiatrist tried to talk me out of the group. People in my group tried to talk me out of it. Everybody would say you know Well Bill this is an emotion you're in grief right now it's all part of the process but I never after the process ended and Keith was OK I never changed. That's still my decision and now even more so since I'm sick. There's no way I want to get up every day and go through this alone.
I've been told that any type of suicide is completely wrong. My sister cried a couple times couple of times. That's not like you know from the first piece of paper that I've ever read about mentioning it seemed so normal to me. I thought wrong. It's just very normal. Suicide is evil it is like to take his own life. The fact that they have AIDS which means that they're going to be suffering and there is probably this point will hope for in a player we cover. It makes just more poignant but it doesn't change the basic moral facts of the case that we have two people here who are agreeing to take their own lives at a certain point in time. Therefore it's wrong. Unlikely as euthanasia. If you are actually causing someone to die or allowing
someone to die by removing the ordinary care like food and water that's a grave morally Wausau. Soon after Keith recovered from meningitis he and Jerry joined the Hemlock Society which gives out information on euthanasia. The Hemlock Society believes that it is not wrong for doctors to help their patients commit suicide. He did just that. Since physicians are there to care for patients in the total continuum of care. In fact assisting a dying patient with a good death is really part of the natural continuum of care between a physician and a patient and the jury Baldwin was cute and Jerry's doctor and they came to me with the issue of we need help. If that help is needed in the future either for pain relief insomnia or maybe if we choose on our own to commit suicide might those medications be available sometime in the future. Now those medications are made available by many many physicians including
myself. They are made available in appropriate numbers for pain relief and insomnia. If the patient chooses to keep them as happens in many terminal patients like cancer patients that's the patients choice and they are prepared. Did you get do you think Jerry's catalogue of ailments could justify enough prescriptions to fill a medicine chest pressure. I suffer from chronic fatigue. Censoring or apathy legs or shortness of breath through the parliamentary fibrosis. I have chronic infections in my head chest and bowels of chronic cowriter. It's a bitch going through every day. In a recent survey of 500 California doctors 79 admitted they had taken the lives of terminal patients who ask to die.
But while suicide is legal. Helping someone commit suicide is not. It's almost a code in discussion if the patient says that. I just don't want to be in pain I don't want to be out of control. I don't want to be in diapers I don't want to have to have someone feed me. The doctor will say you need not get to that point. It's the physician that can keep the patient comfortable. They can give pain medication. And so who else but the physician should be there at the end. Also the physicians have all the means for death they control drugs and they also could give lethal injections was not right which not very many patients could do on their own. I think that's a real mistake to change the relationship so that the doctor becomes an executioner. Dr. Lawrence White is a San Francisco cancer specialist and former president of the California Medical Association. Because I think there's a real difference between talking to an expert about how you do something and then having him
turn around and do it to you. And I think patients ought to be able to trust the reality that doctors are not going to kill them. Most of your money. OK. Your shoes. That's what I'm down. Here. For. But if you look at the Tour. Look over here. When you wrote you for Keith and Jerry the question of what makes life worth living does not prompted an abstract or more discussion but a set of practical physical considerations. We've been friends with. It's called blind and I think about things like if I want to go find I really honestly do not think I would be able to pull myself out of it.
I mean. I'm dealing with everything as it is now and that's enough. You know and I just I don't. Know how much more I can take in regards to things being taken away from me physically and especially emotionally. Over here. If we say that suicide is acceptable when suffering comes great what we're you saying is suffering has no meaning. The suffering is useless and I think that's false. I mean I think that Jesus Christ has shown the most important thing he did was to suffer and he didn't take pain a sedative or a painkiller when it was suffering you refuse what was given to him. Who's a kept person like you or I open the book and interprets what that book means in his mind I could read the same
passage and it can mean something entirely different to me and I don't think anybody. This world today has the right to judge other people to do what we feel is morally right. The priest thinks it's morally right or the neighbor or dad or any of that suicide. We have to believe that all those other people are very family or friends. There are the ones left behind. I haven't mentioned it to my mom. I told my mom knows that I am a member of the Hemlock Society and what I believe but I've never been able to look at her and said you know mother when I get such I'm going to you know commit suicide I I can't do that to her. My mother is 70 years old bad health and I don't think there's any reason to. And that you don't understand but I do think she would understand my family I don't talk to it big or deal with death and dying as she was
not killed. It's the armed certainty of family relations that scares Lawrence and line up. I don't want some 80 year old who's got a fatal disease. To think that maybe my daughter is going to call the doctor up since I've already signed permission for him to kill me and say Doc we got tickets on a cruise in the Caribbean can you knock the old lady off this week. I don't want the old lady to think that it's going to be done for someone else's convenience and if it's legal it will be done for someone else's convenience and I think that's dreadful. Which job is it. Mine right. Thank you phone for her. Life isn't filled with joyous moments all the time. We suffer every day rife is still worth living. We're not going to wake up having a bad day some morning and run for the refrigerator in our bottle of pills. It's not like that. Despite the aches and pains and so forth it's still
worthwhile living every day. I have lots of love. Things that we've surrounded ourselves that fill our lives with love so there's you know it's all an idea right now but I know because of what we've been through in the past it's not just an idea. It's something that we will do when that time comes. Keeps people alive for people with AIDS. Hope means new treatments experimental drugs have been developed that slow the progress of the virus. But the only way patients can get some of these drugs is to volunteer to test the watch of a dying patient do if he finds out that is part of the experiment. He's been given a placebo that is no treatment at all. When Robert found out he was receiving a placebo in a clinical trial last year he broke the rules and started treating him self with drugs he got from a doctor outside the study. Wants a willing subject for medical research. Schmidt today takes whatever drugs he can lay his
hands on and is finished with science. When researchers figured out from a blood test he was taking AZT instead of the placebo they'd given him they terminated from their study. I was pissed. I wasn't going to take placebos work and I'm not so sure that by giving me a placebo that there is any research advantage anyway. I mean. All they going to do is follow me to quote what they call it in point. You know and I said what what is the end point. And they said Well Bob that's a nice way of saying when you croak. Well I'm not willing to die to keep the research quote pure. By deceiving the doctors she was working at cross-purposes not only with scientific research but with the many AIDS patients who depend on it. People who break the rules and experimental drug trials can lead scientists to misinterpret data and draw wrong
conclusions. It doesn't help us if we're for example testing DTI and people on the side are taking Instead we see a side effect then we might make the mistake of assuming that it's from the time factors from some other drug. Doctor of all breeding did one say at a lecture I went to. Research is research and treatment is treatment. And frankly I want treatment. I don't want research. I'm not thrilled about being a guinea pig. Research is why we have a ZT is why we have Airsoft and him. That's why we have the time. We wouldn't have any of the drugs we have if we weren't doing research. The fact that physicians in the community are now describing using team which was developed through a research process involving a placebo control the fact that there is hope and hamming was a subject of both laboratory and human experimentation as an example of what research
does. But frustration with officially sanctioned research is so high that people are tempted not just to break the rules but to make up their own. Last year Martin Delaney spearheaded underground trials of a drug called Compound Q That gave medical supervision to people who are already experimenting on themselves with the drug. How can you blame people for acting in their own self-interest in a system which is perhaps not address their needs adequately. I think you have to ask why are people forced into situations in which they feel the need to act in that manner. And that's where the answer is going to lie. You know in the design of studies that meet people's needs rather than force them to fight for themselves that compound trials were criticized as an ethical for lacking accepted scientific safeguards. But activists aren't the only ones who bend the rules. But I think if someone is failing a protocol or failing the study and not achieving what they need to achieve and I have some
means of intervening there I would rather sacrifice the protocol than sacrifice the patient. Dr. Reg Well let's gave one of his patients to experimental drugs at the same time even though he knew it was against the rules. I justified because the patient still with us. Patients want access to promising new drugs. Scientist want controlled studies and clean data to prove the new drugs work. Activists say there's an alternative. Change the way science is done. We also want to learn as quickly as possible it's been a theme and what you've heard already what the side effects of a new drug are. When can we expect to see them. How can researchers recently announced details of a new drug study designed to take patients concerns into account. The drug could be tested as DTI said to be as effective against the AIDS virus as AZT and less toxic shown on the left for those that are officially under this chemical structure
of GDI. The new study won't use posts and people who don't qualify can still receive VDI with their doctor's approval through a process called Open Label. I think it's entirely possible to create ethical studies that meet the needs of the individual while also getting the answers science needs and I think there have been a number of studies that have done that. I think the current studies of DTI are designed in a way that will do that. But when you're dealing with human beings in clinical research the first hand that the researcher has to wear is as a physician. Balancing one patient's interest against the interest of society is at the heart of the drug testing dilemma. It's also central to many of the dilemmas we've looked at in the past hour which is one of the reasons it's often so difficult to say who is a good guy and who's a bad guy in these situations. Today AIDS is moving with harrowing speed through America's underclass blacks Hispanics the urban poor.
That makes the urgency of finding ethical solutions to these dilemmas even greater. Our level of civilization may be judged by the way we treat the disenfranchised among us. As we write the future history of the AIDS epidemic well it be a history of prejudice and fear. Our well might be one of fairness and compassion. I'm Randy Shilts. And now I am. And.
Wrestling with AIDS
Producing Organization
KQED-TV (Television station : San Francisco, Calif.)
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KQED (San Francisco, California)
The Walter J. Brown Media Archives & Peabody Awards Collection at the University of Georgia (Athens, Georgia)
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Program Description
The ethics of aids and the issue of caring for AIDS patients, as well as AIDS activism. Includes protests by Act Up!; Patients with AIDS; Interview with doctors Hosted by Randy Shilts Digital file of film on KQED Server KQED special report by Randy Shilts from December 14th 1989 examining the ethical and moral challenges raised by the AIDS epidemic in San Francisco. Includes interviews with AIDS patients, activists, insurers, politicians and physicians. Also features scenes from an Act Up demonstration (and clash with police) in downtown San Francisco, archival footage of AIDS reports from the early 1980s and views of many public hearings and speeches relating to AIDS. This program was produced by Georgia Smith and Michael Schwarz.
Program Description
"'Wrestling with AIDS' is a television essay that explores moral dilemmas raised, and played out, in the lives of people living through the [AIDS epidemic]. Hosted by Randy Shilts, author of a seminal history of the disease, this program is noteworthy for its unusual approach to the subject: instead of simply reporting the facts of the epidemic, 'Wrestling with AIDS' looks specifically at the ethical questions that have emerged as the disease has spread. We believe this is the first time broadcast television has covered these crucial issues in this manner."--1989 Peabody Awards entry form.
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Producer: Georgia SmithJim Greenberg
Producing Organization: KQED-TV (Television station : San Francisco, Calif.)
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Identifier: 36-845-6;37553 (KQED)
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Duration: 1:00:00
Identifier: cpb-aacip-55-22h71mk4 (GUID)
Format: 1 inch videotape
Generation: Master
Duration: 1:00:00
The Walter J. Brown Media Archives & Peabody Awards Collection at the University of Georgia
Identifier: 89116dct-arch (Peabody Object Identifier)
Format: U-matic
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Chicago: “Wrestling with AIDS,” 1989-00-00, KQED, The Walter J. Brown Media Archives & Peabody Awards Collection at the University of Georgia, American Archive of Public Broadcasting (GBH and the Library of Congress), Boston, MA and Washington, DC, accessed June 25, 2022,
MLA: “Wrestling with AIDS.” 1989-00-00. KQED, The Walter J. Brown Media Archives & Peabody Awards Collection at the University of Georgia, American Archive of Public Broadcasting (GBH and the Library of Congress), Boston, MA and Washington, DC. Web. June 25, 2022. <>.
APA: Wrestling with AIDS. Boston, MA: KQED, The Walter J. Brown Media Archives & Peabody Awards Collection at the University of Georgia, American Archive of Public Broadcasting (GBH and the Library of Congress), Boston, MA and Washington, DC. Retrieved from