00:00:04.340 - 00:00:37.140

Yeah. Mhm. Mm hmm. San Francisco, October 6th. A demonstration to demand more money for the war on AIDS erupts in violence. This isn't a battle for a few feet of pavement in a ghetto. It's a battle for the moral high ground in an epidemic marked from

00:00:37.140 - 00:00:57.700

the outset by hostility, fear and accusations of immoral behavior on all sides. 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. AIDS is avoidable. 99% avoidable. Is it? Is it

00:00:57.700 - 00:01:23.480

fair for me to engage in in intravenous drug use or unsafe sex practices and get infected with the disease and then expect somebody else to assume the responsibility for my care? Yeah, Hi, I'm Randi Schultz. When I started reporting on AIDS in 1982 it was easy

00:01:23.480 - 00:01:39.380

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 needs your harassment and discrimination. Things aren't so simple anymore. We count cases in the hundreds of thousands now, and

00:01:39.380 - 00:01:57.200

the trauma of AIDS in so many lives is giving new immediacy to moral dilemmas like abortion, euthanasia in 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

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polarized and simplistic. For example, voting for a baseball stadium is not usually equated with committing murder. But in a recent demonstration in San Francisco, some members of the AIDS Coalition to Unleash Power Act Up said that voting for a new baseball field in the city would

00:02:14.910 - 00:02:41.380

divert money from AIDS care. Hence the unlikely slogan. Baseball equals death. The demonstration was supposed to dramatize act ups. Moral agenda. We are not experiencing passive genocide anymore. This is active genocide. We are being allowed to die. But the 250 activists who turned out at the

00:02:41.380 - 00:02:58.430

federal building were met by more than 150 city cops. The moment act up, police lays on, identified himself. He was arrested and jailed. I asked him, why was I being punished? And what he said to me was that well, you faggots are more dangerous than crack

00:02:58.430 - 00:03:16.340

and heroin dealers. As evening fell the demonstrators marched upmarket streak to the Castro here, the confrontation turned violent. That was the point at which I first saw an officer break ranks and raise his club overhead and simply club a passer bys when someone who was standing

00:03:16.340 - 00:03:31.960

there on the shoulder and I was fully convinced that someone who was simply standing on the sidewalk doing nothing was facing a threat of deadly force from a member of the San Francisco Police Department. By the time the skirmish was over, the body count reached riot

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proportions. 49 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. I want to know why all those officers and all of those paddy wagons and all of the violence that

00:03:49.300 - 00:04:06.510

broke out against my community happened. Who made the decision why and isn't going to happen again? Because if it is, we're going to be ready. The result was a major shakeup and investigation of top police brass, but the cops weren't the only ones whose tactics that

00:04:06.510 - 00:04:26.860

night came under attack. The joke that runs around is act of grow up. You know, in this city we've gained a lot of of respectability in since the seventies in San Francisco, we've come quite a ways and with act ups not just act ups, but with

00:04:26.860 - 00:04:44.100

some of their more irresponsible behavior. We're losing that respectability with the people in the city. In the situation, such as what happened on Castro Street, I honestly believe that act up provoked the whole thing and cause it the number one word that everybody I know uses

00:04:44.100 - 00:05:02.290

as a responsibility. Try to be more responsible. Think about the consequences. It amazes me that complaining that we're dying is perceived as irresponsible. Irresponsibility, to me is letting 45,000 people die of the disease. Before you say the word aids on national television, when you're the president

00:05:02.300 - 00:05:22.920

of the richest and most powerful country in the world, that is irresponsible, and that is murder. The activists say. Almost any tactic, any protest is justified to force AIDS to the top of the American agenda. They've turned the disease into a political movement and demanded attention.

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You're not going to do it by writing letters to the editor, and that didn't do it because people have tried that you're going to do it by seizing a platform by jumping in front of where the cameras are by redefining the agenda. The activists burst on

00:05:40.550 - 00:05:57.130

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. Their militancy was it caused the government to like set up, take notice and go.

00:05:57.130 - 00:06:18.590

Wow, 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 Next Act Up took on industry They've repeatedly accused Drugmaker Berle's welcome of price gouging on its

00:06:18.590 - 00:06:37.000

antiviral drug A Z T. If I make $14,000 a year and I have to spend $6500 on a full dosage of a Z T. What does that leave me in this city to spend on rent and food and utilities? And they have also thrown up picket

00:06:37.000 - 00:06:54.340

lines, accusing insurance companies of shirking their moral duty to pay for treatment. Everyone has the inalienable right to get adequate health care, 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

00:06:54.350 - 00:07:10.040

unethical to deny it based upon those issues or whether you can afford it or not. Act 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

00:07:10.040 - 00:07:24.040

time, AIDS patients who are losing their sight had to choose between taking an experimental drug to prolong life are taking one that might save them from going blind. But Sutton got the year of the National Institutes of Health in our own program, and we're discussing it

00:07:24.040 - 00:07:35.980

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

00:07:35.980 - 00:07:55.590

to be on the drug but don't fit into the clinical trial. The FDA changed its rules that the activists have pushed science along. Paul Volberding directs clinical trials of new AIDS drugs at San Francisco General Hospital the way clinical trials have been done. Certainly, the FDA

00:07:55.590 - 00:08:15.340

involvement has changed. The willingness of the drug companies to do things in different ways has changed, in large part because of the groups like Act Up. In some respects, the activists have become part of the establishment they continue to attack before conducting this public forum introducing

00:08:15.340 - 00:08:29.360

the new antiviral drug D. D I. The Bristol Myers company was careful to ask Act up members to help design the drug's clinical tests. I do not believe it would be in the position of having this forum tonight. We're not for the perseverance and the hard

00:08:29.360 - 00:08:46.610

work of act up. We owe a great deal to them and their work on behalf of those of us living with HIV disease. And I'd like to say thank you, Yeah, Almost everyone involved with AIDS agrees with the basic political agenda of the radical activists, but

00:08:46.610 - 00:09:03.470

controversy swirls around their tactics. Act up 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 do their own guerilla tactics hasten an end to the suffering and dying. Some recent actions

00:09:03.470 - 00:09:23.870

have prompted complaints that the activists are flunking their own moral test. George. In January of this year, a group called Stop AIDS Now or else closed down the Golden Gate Bridge during morning rush hour, declaring that the public is duty bound to join their fight. There's

00:09:23.870 - 00:09:42.200

a moral imperative 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 discovered a captive audience doesn't always want to

00:09:42.200 - 00:09:55.310

listen to run them over. I have to go to work to take care of AIDS 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 of AIDS patients. People get pissed off and they think

00:09:55.310 - 00:10:08.920

about things like that. And they don't think about the AIDS part, what they're thinking about. Oh, those radical ferries are out there causing trouble again. I think it does annoy people, and I think it's counterproductive. That's why I say I think It's the right message, but

00:10:08.920 - 00:10:25.020

the wrong target. Undaunted, the same group returned in September to crash the gala opening of the San Francisco Opera. If the rich and the powerful were diagnosed with AIDS, what would they do? Would they have access to treatment? Would they have doctors appointments? Would they have

00:10:25.020 - 00:10:43.460

health insurance? I believe they would. I believe they would be at their congressman's office insisting 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 hospital criticism. Yes,

00:10:43.840 - 00:10:56.560

they, whoever it was who came to the opera house believed that there was someone sitting in the audience who in their pocket had the 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

00:10:56.560 - 00:11:11.060

cure. I can understand that, But that wasn't the case. I am a gay person, HIV positive, taking a seat, and I'm embarrassed by their actions. I think they have lost a great place of support. When you can't do what you want to do, you get angry.

00:11:11.210 - 00:11:29.300

And for eight minutes, the people in the opera felt how frustrated people living with AIDS and their friends have felt for a decade. The AIDS crisis knows no borders. Last June, act Up took over the opening ceremonies of the International AIDS Conference in Montreal and repeatedly

00:11:29.300 - 00:11:50.790

disrupted the world's largest gathering of AIDS. Researchers and public health officials were educating the public and providing personal risk reduction, counseling and referrals for those whose behavior put them at risk of infection. People with AIDS need to be given a voice in policy making decisions. And

00:11:50.800 - 00:12:05.380

if you lock us out of your conferences and your meetings and your speech is, we're 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

00:12:05.380 - 00:12:22.790

repeat performance of Montreal, so act up won't be closed out. In fact, they've been invited to conference planning sessions. If the rhetoric of the AIDS militants seems hysterical at times, it's in keeping with the history of AIDS. Fear has been the subtext of this epidemic. To

00:12:22.790 - 00:12:43.420

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 Kaposi's sarcoma. I didn't know anything about Kaposi's sarcoma. I started

00:12:43.420 - 00:13:03.050

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, a medical establishment, medical, medically trained people being confronted with a group of people with the disease that we didn't understand

00:13:03.440 - 00:13:22.250

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, 251 Americans were known to be sick. 99 had already died. Our best guess is that it's somehow related to the gay lifestyle, that

00:13:23.240 - 00:13:40.900

whether it's whether it's drug use, whether it's sexual activity, we're not completely sure at this time. Then, in December 1982 a San Francisco Infante who had had a blood transfusion contracted AIDS. Now it was clear that AIDS could be an infectious disease and that no one

00:13:40.900 - 00:13:54.760

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

00:13:54.760 - 00:14:11.930

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

00:14:11.940 - 00:14:27.650

eighties that was not afraid that they were going to catch the disease from treating their patients 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 that the disease provides to a

00:14:27.650 - 00:14:46.360

physician. They were telling us that it was sexually transmitted. We didn't believe them. There were 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 1983 Andrew Small resigned

00:14:46.360 - 00:15:01.480

from a jury after its other members refused to be in the same room with him the same day, Smalls friend Paul Castro had to leave the set of a local TV talk show when studio technicians refused to pin a microphone on him. Can't be on television

00:15:01.480 - 00:15:21.190

instructions. I can't be in a courtroom. I'm not, you know, where's it gonna end restaurants? Gay owned restaurants did lose business, but it didn't end there. Doctors refused to treat AIDS patients. San Francisco police and firefighters were gloves and mask when resuscitating anyone they thought might

00:15:21.190 - 00:15:39.130

have AIDS. Today I have ordered the closure of 14 commercial establishments, which promote and profit from the spread of AIDS. Closing the bath houses in 1984 was a last ditch effort to keep AIDS in check. But for many days it seemed less an attempt to protect

00:15:39.130 - 00:16:00.260

the public health than 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 those and when they realized that wasn't going to work, perhaps well, let's close the Castro.

00:16:01.140 - 00:16:15.790

That was a very, very strong fear, in fact, strong enough that people who would have supported closure of the bath houses backed off. It was again, one of the reasons why I hope the gay community members in the gay community would do it themselves. I failed

00:16:15.790 - 00:16:32.380

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 1985 the dramatic news that this man had AIDS

00:16:32.460 - 00:16:49.140

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. My gosh, this is something that if Rock Hudson can get

00:16:49.140 - 00:17:06.810

it, then you know, maybe I'm at risk. Fear touched every corner of the nation 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

00:17:06.810 - 00:17:21.340

bound passenger to get off the plane. He had already been seated on the Stewart's. I believe it was come up and said that I would have to leave the airplane because I would, uh, in case I need oxygen. No one was able to administer it to

00:17:21.340 - 00:17:37.470

me. This is all that remains of the Ray family home in Arcadia, Florida The small wooden house was gutted by fire last night. The family that has been ridiculed and shunned because of an AIDS hysteria in their hometown lost everything. One young man who had a

00:17:37.470 - 00:17:51.980

family who was beaten up several times, broken ribs, many abrasions. And during one of these attacks, he turned to 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 after your wife

00:17:51.990 - 00:18:07.320

because she's probably infected. A friend of mine recently wanted his teeth claim on making the appointment. He felt it was his ethical duty to inform his dentist that he was HIV positive. But then he found no dentist willing to see him. In the end, he had

00:18:07.320 - 00:18:24.140

to go to a dentist whom he had not informed. Health care workers are afraid of needle sticks or any contact with the patient's blood. This issue exploded a few months ago. Here at San Francisco General Hospital when orthopedic surgeon Laraine Day resigned because she was afraid

00:18:24.140 - 00:18:39.010

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 risks to health care workers because they're afraid of healthcare. Workers know the risk. They won't want to take care of

00:18:39.010 - 00:18:54.900

AIDS patients. They are 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

00:18:54.900 - 00:19:10.360

clothing, and she wants the legal right to test patients for AIDS. We are still seeing people who are fired from their jobs who you know it's going to mess up your insurance no matter what, it's going to mess up your insurance. If you have the test

00:19:10.370 - 00:19:25.760

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

00:19:25.770 - 00:19:48.020

our right to stay alive. You go, Yeah. Mm. The patient's right to stay alive depends on treatment, and that depends on money. I'm just trying to get as much of the drug into my lungs as possible because I do not want to have another bout of

00:19:48.020 - 00:20:07.080

Pneumocystis pneumonia. Ron Brunk 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

00:20:07.080 - 00:20:32.080

Pneumocystis 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 being an approved treatment regimen. I'm now in my 22nd month. I'm glad I did what my doctor wanted me

00:20:32.080 - 00:20:50.980

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 and combinations not yet sanctioned by the Food and Drug Administration's cautious bureaucracy, and insurance companies often won't pay for treatments that

00:20:50.980 - 00:21:09.970

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 or highly priced drugs that may or may not solve the problem. Uh, there has to be a standard, acceptable medical practice, and in

00:21:09.970 - 00:21:24.740

this area, it's it's developing so rapidly that it's difficult to say that this is going to work with This isn't going to work. So the insurance companies and the contracts fall back on and rely on provision contractual provisions that the plant the benefits payable have to

00:21:24.740 - 00:21:45.900

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? Brunk volunteers part time at AIDS Benefits Counselors, a nonprofit group that helps AIDS patients collect money from their insurance companies. You know,

00:21:45.910 - 00:22:00.190

I have to be really honest. What disturbs me about all this is this guy has been out of work for almost two years, and nobody came forward and told him that he had this benefit. The issue of responsibility can be, I mean, what's responsible most, right

00:22:00.190 - 00:22:18.420

as two different things. Blank fought his own insurance company who eventually agreed to pay for his pentameter. But keeping just one person with AIDS alive for a year can cost $10,000 in medication, doctors fees and hospital cost. In the 19 nineties, caring for America's AIDS patients

00:22:18.420 - 00:22:34.020

were run up a bill of $10 billion 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 to keep certain people alive? The job of the insurance company isn't a moral job.

00:22:34.030 - 00:22:53.940

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 Shops Story is typical. His insurance company claims his pentameter treatments. The FDA approved our physical therapy and

00:22:53.940 - 00:23:14.590

therefore not covered by his policy. The company won't explain further. I've got no straight answer from anybody, and one department will switch me to the other department. Um, it's just it's been going on for so long, and it's so crazy and so frustrating that it's easy

00:23:14.590 - 00:23:27.640

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 do have to fly over there to Philadelphia and go in there and and start screaming

00:23:27.640 - 00:23:44.130

at them if they do? In fact, do not pay for the this whole bill for aerosolized mentality, that's that's mine, and I don't know how I'm gonna pay it. I have no idea. Yes, there are individual anecdotes and anecdotal situations that we've all heard about. The

00:23:44.130 - 00:24:00.670

insurance company didn't pay or they argued, but I think by and large the system functions and they pay their claims. It'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 we have

00:24:00.670 - 00:24:24.490

a problem. Insurance company has no way to operate other than contractually, the problem with HIV disease is that oftentimes the treatment regimens change so quickly that the insurance companies can't keep abreast, and so oftentimes a physician will recommend certain courses of treatment, the insurance companies unfamiliar

00:24:24.490 - 00:24:43.370

with it and will deny that particular treatment. For years, insurance companies have required blood test to screen out people with pre existing 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

00:24:43.370 - 00:24:58.390

with AIDS. 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 and mental illness and hypertension everything for years. Why should AIDS be different here? I

00:24:58.390 - 00:25:11.360

am an independent agent serving the gay and lesbian community, and some of them, uh, I feel that it is a right owed to them that the insurance company cannot do that. And I have to lay down the ground rules for him and say they can do

00:25:11.360 - 00:25:27.700

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 regard

00:25:27.710 - 00:25:48.430

to underwriting. Insurance companies make money by taking in more in premiums than they pay out in benefits. If too many people they ensure gets sick, they can raise their income by raising premiums that can have a dramatic effect on their policy holders. Mhm. Yeah. Like many

00:25:48.430 - 00:26:06.330

businesses, just desserts in San Francisco provides health benefits to its 200 employees. But when two people were diagnosed as having AIDS, the premium's doubled to more than $300,000 a year. How much more are people going to pay for products from just deserts so that I can

00:26:06.330 - 00:26:23.090

continue to pay the increased medical costs? Uh, of our insurance? Versus 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. Then I can do you start charging your employees for part

00:26:23.100 - 00:26:36.130

of the medical plan, which is something we still haven't done and that they may become pretty simple. Which is, 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

00:26:36.130 - 00:26:53.060

can lose that insurance on a short term scale. While you are working, you have coverage and the system kind of works. But once the catastrophic disease hits you hard over a period of time. Eventually, you are going to end up on welfare, period in the subject

00:26:53.940 - 00:27:11.790

comes back to the taxpayer. Are you? The taxpayer pays or we start looking more and more like Calcutta. That sounds good. Let's take a listen to your back. Deep breath in and out. I figured out once last year that I spent $14,000 on my medical care.

00:27:11.800 - 00:27:28.850

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 medical. So I'm hoping that at least my A c t will be will be covered. But

00:27:28.860 - 00:27:44.770

otherwise I'm dependent on my family and my friends and my luck. Well, I'm gonna very limited income. So I got to watch everything because by the time I pay my rent out and my my bills, it's like 3 50 recently like 2 50 that's to eat

00:27:44.770 - 00:27:57.530

on and for any share of costs that I have to do with any medicine or or if I can't get somewhere if I'd say a cab some days because I can't get on a bus in that And so, yeah, the financial thing is a big worry.

00:27:57.670 - 00:28:15.940

The next epidemic we're going to see is an epidemic of AIDS among Ivy drug users, women and Children from the inner cities. Those people don't have private insurance, and in the entire society will have to take care of that under some program, like medical, the taxpayers,

00:28:15.940 - 00:28:35.030

worry comes from the virus is unchecked spread among minorities, especially I v drug users who are notoriously difficult to reach with preventive education. My mom was only 50 years old when she bounced away. Yeah, she's an I V drug users for as long as I can

00:28:35.030 - 00:28:49.510

remember, she was as far as I know, she was still shooting drugs to the day she died, because when we took her bed apart, we found these needles there. I'm laying around. I think about the people that she was sharing her needles with. If they knew

00:28:49.620 - 00:29:08.640

that she had AIDS, are they infected with AIDS? Are they still passing the state's virus around? And it's really scary to think about it. It really is really scary. God bless you need exchange stop AIDS. One answer to this crisis creates moral and political dilemmas of

00:29:08.640 - 00:29:23.370

its own making sure drug users can get clean needles so they don't pass around the virus by sharing syringes back next week, all that's doing is giving. It's okay, it's okay to shoot heroin around. Problem is not the problem. If you gonna have drug using the

00:29:23.370 - 00:29:38.420

devastation. Harris. Can we slow down the aging problem? They get through that needle figure to throw it down, some kid's gonna run across it. You're not stopping it. AIDS is avoidable. 99% avoidable. Is it Is it fair for me to engage in in intravenous drug use

00:29:38.420 - 00:29:53.420

or 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

00:29:53.420 - 00:30:12.820

million a year on AIDS healthcare. This additional cost, I think, has to be viewed as beyond even the resources of this city, which has been extraordinarily generous in fighting the AIDS epidemic. This has to be federal costs. So far, the federal government has not come up

00:30:12.820 - 00:30:28.090

with the money this year, the federal budget parades was $1.6 billion.1 percent of the federal health budget. Even though the Department of Health and Human Services ask for more. What people have to realize is that the cost of AIDS, it's not going to go away. It's

00:30:28.090 - 00:30:46.700

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. That's easy, okay? And the right thing is to care for sick people in any way

00:30:46.700 - 00:31:05.420

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

00:31:05.420 - 00:31:23.920

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 the child or an abortion? Even when the Children of people with AIDS are not

00:31:23.920 - 00:31:40.230

infected, they are likely to become orphans once their parents die, most of them will be black or Hispanic orphans in a society that doesn't do much for minority Children. If a child has AIDS, whom should the parents tell? That was an easy choice for the parents

00:31:40.230 - 00:32:02.910

of Brendan O. Rourke. When Brendan was five years old, Pope John Paul the second singled him out at a special Mass in San Francisco, thrusting there are works into the limelight. I didn't have to really wrestle with that decision, whether to who to tell and when

00:32:02.910 - 00:32:27.080

to tell them. People found out in a very positive way among his friends, and he has a lot of them. Brendan has become a kind of folk hero way. Yes, Bell. If you have eight, some people die. Some people do. Some people do. I ate a

00:32:27.080 - 00:32:48.460

home run today, really? In soccer ball, you know where the you know, the kindergarten place. This year, he had all the way down there. Brendan's acceptance by his community is not typical of most Children with AIDS trying to kill everybody else. You're not gonna kill. Okay,

00:32:49.970 - 00:33:11.670

1987 rural Tennessee. Angry parents fight against letting a hemophiliac boy with AIDS into the local public school. Northern Florida Three hemophiliac boys infected with the AIDS virus are banned from school in the face of community hostility. Shortly after they were readmitted, their home was burned down.

00:33:12.270 - 00:33:24.770

I went over there last night and I looked at the house myself, and you can look at it and obvious the fire started in the Children's bedroom. Whoever did it was trying to make a point. There's no way I'm going to associate with them. I personally

00:33:24.770 - 00:33:46.770

will tell my cat, my child, if someone has AIDS, stay away from them. 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

00:33:46.770 - 00:34:07.470

no one that she and her daughter are infected, not even the child's babysitter or daycare center. I did lose my husband and he did pass away from the disease, and we had to cover that up with a different diagnosis or something else that he died from.

00:34:07.680 - 00:34:27.050

I don't want her growing up with the stigma of this disease. There really is no duty to inform schools, churches daycares friends, Get in here, Put your arm down. Down. Rita Farner is a nurse in the pediatric AIDS unit at Oakland Children's Hospital. She says the

00:34:27.050 - 00:34:43.860

Children infected with the AIDS virus do not pose a threat to other Children. Okay, are you okay? Should we sit down here? And people often say, Well, they're always could be a first time And that's true. There could be a first time. But in all the

00:34:43.860 - 00:35:03.910

years that we've known about this disease, there haven't been any documented cases. The reclusive family is afraid anyway. When Susan Recluses brother was dying of AIDS, she refused to let her Children visit him. If any one of her Children's playmates has AIDS, she thinks she has

00:35:03.910 - 00:35:23.980

a right to know. I think it's got to be a very hard decision for the parent, but I think they should tell the truth and let other people make the decision whether they want to have their child exposed. Yeah, transmittable or not, they don't know. Even

00:35:23.980 - 00:35:43.070

though they say it can't be. 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, many of whom gave birth without knowing their HIV positive. Pediatric AIDS specialist Dr Diane Warren would like

00:35:43.070 - 00:36:00.700

to change that. 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 so positive and they deserve to know whether their babies or fetuses are at

00:36:00.700 - 00:36:16.420

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, can't think

00:36:16.420 - 00:36:33.990

of another infection where we tiptoe around and try to avoid finding out whether someone's infected? We want to know, especially because we have potential treatment. We want to know if the patients infected so that we can take care of them. When you see a child all

00:36:33.990 - 00:36:45.610

of a sudden, have a weight loss or you see a child who's 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're kind of like slapped in the face again

00:36:45.610 - 00:37:04.870

with the reality. This child is sick and this child will die. What's this? What's this? What's this? That reality is for social worker Jerry. Ditto PV to question whether HIV infected women should have Children seeing the suffering that these Children go through, seeing the suffering that

00:37:04.870 - 00:37:18.060

either relatives or 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

00:37:18.060 - 00:37:35.960

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. Lori is pregnant for the second time.

00:37:36.240 - 00:37:50.930

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 her first child. They told me my baby was going to be born with AIDS. He would die within a year and

00:37:50.930 - 00:38:08.130

that I might live another year. And my baby is negative. He was not born with a and this has been two years and I'm still healthy. Every social worker and every doctor that we talked to try to get her to have her tube Stein. And we

00:38:08.130 - 00:38:27.930

just We didn't feel that. I don't know. We didn't feel like that was the correct way to handle the situation. Dancing. Although they are practicing Catholics, Lori and Paul decided to use contraceptives after the birth of their first child. She became pregnant. Anyway, the new baby

00:38:27.930 - 00:38:48.400

has a 70% chance of being healthy. And if I have an abortion, he doesn't have any chance. So that's why we decided to keep this one there. Their new baby is due in January. I'm really positive this baby is gonna be fine. Uh huh. If it's

00:38:48.400 - 00:39:06.330

not well, 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

00:39:06.330 - 00:39:20.090

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 100 friends die in this epidemic, and I'd estimate that about a

00:39:20.090 - 00:39:38.920

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 does thinking it out make it moral? That's a question thousands of Americans

00:39:38.920 - 00:40:03.330

are asking themselves with each passing day of AIDS. Listen to the Diary of Keith Sparks from August 1986. At the moment, I've got splitting headaches, back pains, arm pain throughout my whole body. Yeah, I'm done. Tranquilizers, narcotics, everything. Just for pain. Had chemotherapy treatment at 4.

00:40:03.330 - 00:40:33.200

30. Started getting very sick by six. Growing up at seven. Yeah, entered hospital for spinal meningitis. It doesn't seem that I'm getting anywhere with this disease left Notes are so sore. Time to biopsy, lymph nodes again. Suicide lying here just thinking about suicide. They say life

00:40:33.200 - 00:40:51.170

is not good. Can they say life is good right now, I just want to die. We have the doctor crisis at 11. Three years later, Keith Sparks is still alive. He and Jerry Anderson, his lover of 10 years, are both fighting the AIDS virus, but they

00:40:51.170 - 00:41:08.810

don't intend to die from AIDS. They've made a pact to commit suicide together when one of them is close to die. I've called myself fantasizing about our death. You know, um, how we're going to do it when we're going to do it? What a relief it

00:41:08.810 - 00:41:26.880

will be. I've got to fill out these insurance papers for the doctor's office. When Keith was near death, Jerry took care of him. At that time, Jerry was not yet sick. I came to the conclusion when Keith was near death that I didn't want to go

00:41:26.880 - 00:41:43.160

on without him. At that point, that was a decision I had made. The psychiatrist tried to talk me out of it. The people in my group tried to talk me out of it. Everybody was Well, this is an emotion. You're in grief right now. It's all

00:41:43.160 - 00:41:59.440

part of the process. But I never after the process ended in, Keith was okay. I never changed my mind. 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. Yeah,

00:42:00.200 - 00:42:18.560

I've been toad that any type of suicide is completely wrong. My sister tried to commit suicide a couple of times a couple of times, and I thought, That's not right. You don't do that. But from the first piece of paper that I picked up and read

00:42:18.560 - 00:42:38.250

about euthanasia, it seems so normal to me. I thought, What's wrong with me? It's just very normal to me. Suicide is a grave moral evil that no one has the right to take his own life, the fact that they have AIDS, which means that they are

00:42:38.260 - 00:42:55.270

going to be suffering and going to be declining. And there is probably, at this point, no hope for any kind of recovery. Uh, makes this more poignant, but it doesn't change the basic moral facts of the case that we have two people here who are agreeing

00:42:55.270 - 00:43:15.930

to take their own lives at a certain point in time. Therefore, it's wrong and like what? 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 great moral evil. Also, soon after Keith

00:43:15.930 - 00:43:35.760

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, since physicians are there to care for patients in the total continuum of care. In

00:43:35.760 - 00:43:52.220

fact, assisting a dying patient with a good death is really part of the natural continuum of care between a physician and a patient. Jerry Baldwin was Keith and Jerry's doctor, and they came to me with the issue of We need help if that help is needed

00:43:52.220 - 00:44:14.660

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're made available and appropriate numbers for pain

00:44:14.660 - 00:44:33.590

relief and insomnia if the patient chooses to keep them, as happens in many terminal patients like cancer patients, and that's the patient's choice and they are prepared. Thank you, Keith and Jerry's catalog of elements could justify enough prescriptions to fill a medicine chest. I suffer from

00:44:33.590 - 00:45:00.110

chronic fatigue. I have sensory neuropathy in my legs and arms and feet and hands have shortness of breath due to pulmonary fibrosis. I have chronic infections in my head, chest and bowels have chronic colitis. Um, it's a bitch going through every day. 10 or 74. Sounds

00:45:00.110 - 00:45:21.820

good. In a recent survey of 500 California doctors, 79 admitted they had taken the lives of terminal patients who asked to die. But while suicide is legal, helping someone commits suicide is not. It's almost a code in discussion. If the patient says that I just don't

00:45:21.820 - 00:45:36.750

want to be in pain, I don't want to be out of control. Um, 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

00:45:36.760 - 00:45:53.040

the patient comfortable. That 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 controlled drugs, and they also could give lethal injections with which not very many patients could do

00:45:53.040 - 00:46:09.850

on their own. I think it's a real mistake to change the relationship so that the doctor becomes an executioner. Dr. Lawrence White is the San Francisco cancer specialist and former president of the California Medical Association. Because I think there's a real difference between talking to an

00:46:09.850 - 00:46:33.710

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. Okay, night at eight. Okay. Most accounts. Jury 98. Okay. Yeah.

00:46:34.380 - 00:47:02.210

Mhm. Okay, put your shoes back. It's only £1 £1 hearing and isn't that much. Let's have you look at the door. Okay. Look over here. When was your last visit? The doctor For Keith and Jerri, the question What makes life worth living does not prompt and

00:47:02.220 - 00:47:17.310

abstract moral discussion, but a set of practical physical considerations. We've had a few friends with age go blind, and I think about things like that. If I was to go find, I really honestly do not think I would be able to pull myself out of it.

00:47:17.320 - 00:47:39.820

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. Yeah, your tongue over here. If we say

00:47:39.820 - 00:47:57.790

that suicide is acceptable when suffering becomes great, what we're really 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 you did was to suffer. And he didn't take

00:47:57.800 - 00:48:18.740

pain, a sedative or painkiller. When he was suffering, he refused what was given to him? Mhm. Who's a Catholic priest? He's just a person like you or I or opens a book and interprets what that book's means in his mind. I could read the same passage,

00:48:18.740 - 00:48:36.330

and it could mean something entirely different to me, and I don't think anybody in this world today has the right to judge other people. We do what we feel is morally right, not what the priest thinks is morally right, or the neighbor or mom or dad

00:48:36.330 - 00:48:54.560

or any of that suicide inevitably involves other people, family, friends, they're 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 in, But I have never been able

00:48:54.560 - 00:49:11.360

to look at her and said, You know, Mother, when I get real sick, I'm gonna, 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 at all that she'd understand.

00:49:11.600 - 00:49:29.040

But I do think she would understand my family. I just don't talk to it. But I can't deal with death and dying issues at all. It's the uncertainty of family relations that scares Lawrence White. I don't want some 80 year old who's got a fatal disease

00:49:29.670 - 00:49:41.710

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

00:49:41.710 - 00:50:03.060

old lady to think that it's gonna 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. Who's Wichita gig? Is that Heinrich? It's weird. This thing is falling apart. Oh, her life isn't filled

00:50:03.060 - 00:50:20.270

with joyous moments. All the time we suffer, everyday life is still worth living. We're not gonna wake up having a bad day some morning and run for the refrigerator and our bottle of pills. It's not like that. Despite the aches and pains and so forth, it's

00:50:20.660 - 00:50:35.540

still worth while 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

00:50:35.540 - 00:50:55.250

idea. It's something that we will do when that time comes. Okay, Hope 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

00:50:55.250 - 00:51:12.300

to volunteer to test them. What should 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 Schmidt found out he was receiving a placebo in a clinical trial last year,

00:51:12.310 - 00:51:29.310

he broke the rules and started treating himself with drugs he got from a doctor outside the study. Once 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 blood test

00:51:29.310 - 00:51:49.470

he was taking a Z T instead of the placebo they'd given him, they terminated Schmidt from their study. I was pissed I wasn't going to take placebos anymore. And I'm not so sure that by giving me a placebo that there is any research advantage anyway. I

00:51:49.470 - 00:52:06.660

mean, all they're going to do is follow me to quote what they call the end point. When I said What is the end point? And they said, Well, Bob, it's a nice way of saying when you croak well, I'm not willing to die. To keep the

00:52:06.660 - 00:52:27.200

research quote pure by deceiving the doctors, Schmidt 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

00:52:27.200 - 00:52:40.060

doesn't help us if we're, for example, testing D D I and people on the side or taking a Z T instead. If we see a side effect, then we might make the mistake of assuming that it's from D D. I. In fact, it's from some other

00:52:40.060 - 00:53:04.950

drug, Dr Volberding did once 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, uh, it's why we have aerosol contamination.

00:53:04.950 - 00:53:21.450

That's why we have beady eye. And 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 prescribing egg, which was developed through a research process involving a placebo, control the fact that aerosol contamination

00:53:21.450 - 00:53:42.980

was a subject of both laboratory and human experimentation is 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

00:53:42.980 - 00:53:58.870

of a drug called Compound Cue. The trials 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 has perhaps not addressed their needs adequately? I think you

00:53:58.870 - 00:54:13.870

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 gonna lie in the design of studies that meet people's needs rather than force them to fight for themselves. The compound Q

00:54:13.870 - 00:54:35.580

trials were criticized as unethical for lacking accepted scientific safeguards. But activists aren't the only ones who bend the rules. I think if someone is failing a protocol or the failing the study and not achieving what they need to achieve, and I have some means of intervening

00:54:35.580 - 00:54:53.470

there, I would rather sacrifice the protocol than sacrifice the patient. Dr. Rick Wallets 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 Let's see the question. Patients

00:54:53.470 - 00:55:10.140

want access to promising new drugs. Scientists 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. And it's been a theme and what you've heard

00:55:10.140 - 00:55:26.280

already, what the side effects of of a new drug are, UH, when can we expect to see them? Researchers recently announced details of a new drug study designed to take patients concerns into account the drug to be tested as D. D. I said to be as

00:55:26.280 - 00:55:43.100

effective against the AIDS virus is a CT and less toxic shown on the left. For those that are aficionados of, this is the chemical structure of D. D. I. The new study won't use placebos, and people who don't qualify can still receive D. D. I with

00:55:43.100 - 00:55:58.070

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

00:55:58.070 - 00:56:14.340

the current studies of D. D. I are designed in a way that will do that. But when you're dealing with human beings in clinical research, the first hat that the researcher has to wear is as physicians. Balancing one patient's interests against the interests of society is

00:56:14.340 - 00:56:28.830

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's a good guy and who's a bad guy in these situations today,

00:56:28.920 - 00:56:48.830

AIDS is moving with harrowing speed through America's underclass blacks, Hispanics, the urban poor. That makes the urgency of finding ethical solution 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

00:56:48.830 - 00:56:58.680

history of the AIDS epidemic. Will it be a history of prejudice and fear, or will it be one of fairness and compassion? I'm Randi Schultz