Wrestling with AIDS

e e e e s Thank you for your time, and thank you so much for your time, and thank you so much. San Francisco, October 6th, a demonstration to demand more money for the war on AIDS and loves and violence. This isn't a battle for a few feet of pavement in a gay ghetto.

It's a battle for the more high ground in an epidemic marked from the outset by hostility, fear, and accusations of immoral behavior are all sides. This is genocide. It affects our lives every day. You cannot choose to ignore it. It's not going the way we will not let you ignore it. AIDS is avoidable. 99% avoidable. Is it fair for me to engage in an intravenous drug use or unsafe sex practices and get infected with a disease and then expect somebody else to assume the responsibility for my care. Hi, I'm Randy Schultz. 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-jure harassment and discrimination.

Things aren't so simple anymore. We count cases in the hundreds of thousands now and the trauma of AIDS in 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 at a recent demonstration in San Francisco, some members of the AIDS coalition to unleash power have said that voting for a new baseball field in the city would divert money from AIDS care. Hence the unlikely slogan, baseball equals death. The demonstration was supposed to dramatize act up to 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 federal building were met by more than 150 city cops. The moment act ups, police lays on identified himself. He was arrested in jail. I asked him why was I being punished and what he said to me was that, well, you faggots are more dangerous than crack and heroin dealers. As evening fell, the demonstrators marched up Market Street to the Castro. Here the confrontation turned violent. That was the point of which I first saw an officer break ranks and raise his club overhead and simply club a passerby for someone who was standing there on the shoulder. But it's fully convinced that someone who is 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 proportions, 49 arrested, 9 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 padded wagons and all of the violence that broke out against my community happened. Who made the decision? Why? And is it going to happen to begin to do this? We're going to be ready. The result was a major shake up and investigation of top police brass, but the cops weren't the only ones whose tactics that might came under attack. The joke that runs around is act of grow up. In this city, we've gained a lot of respectability in since the 70s and 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 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 caused it. The number one word that everybody I know uses is responsibility. Try to be more responsible. Think about the consequences.

It amazes me that complaining that we're dying is perceived as irresponsible. It responsibility to me is letting 45,000 people die of a disease before you say the word AIDS and 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. The act of the same, 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. You're not going to do it by writing letters to the editor, and that didn't do it because people 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 act of this burst on the national scene in October 1988 with a protest that closed down the Food and Drug Administration headquarters in Washington, D.C. They're demand for quicker government approval of drugs was nothing new. Their militancy was.

It caused the government to, like, set a 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. Next, act up to come industry. They've repeatedly accused drug maker Burrow's welcome of price gouging on its antiviral drug AZT. If I make $14,000 a year, and I have to spend $6,500 on a full dosage of AZT, what does that leave me in this city to spend on rent and food and utilities? And they've also thrown up pick-up 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 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 policy makers. Terry Sutton was an AIDS activist who negotiated to change the roles of government-run drug studies. At the time AIDS patients who were 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. Our own program and we're discussing it actively with the people from the FDA to say, let's just call a timeout 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 their signs along. The federal voting directs 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 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 the new antiviral drug, DDI, 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 forum tonight, we're not for the perseverance and the hard work of Act up. We owe a great deal to them and there work on behalf of those of us living with HIV disease. I'd like to say thank you. Almost very well involved in AIDS, agrees with the base of political agenda of the radical activists. By practicing these rules around their tactics, Act up demands that any effort in the fight against AIDS be held to a single standard. Does it stop the dying and does it do it now? But do their own guerrilla tactics hasten and 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 closed down the Golden Gate Bridge during morning rush hour, declaring that the public is duty bound to join their fight. There's 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 that captive audience doesn't always want to listen. Right over the shut about picture, 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, it takes care of AIDS patients. People get pissed off and they think about things like that. And they don't think about the AIDS part. What they're thinking about, oh, those radical theories are out there causing trouble again. I think it doesn't annoy people and I think it's counterproductive.

That's why I said, I think it's the right message, but 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 doctor's appointments? Would they have 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 hostile criticism. Yes, they, whoever it was, 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 cure. I can understand that, but that wasn't the case. I am the gay person, HIV positive taking ACT, and I'm embarrassed by their actions. I think they have lost a great base of support.

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. The AIDS 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 in 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. People with AIDS need to be given a voice in policy-making decisions. And if you lock us out of your conferences and your meetings and your speeches, 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 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 the 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 sarcoma. I didn't know anything about campuses sarcoma. 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 a 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. With an 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. 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 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 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 physician. They were telling us that it was sexually transmitted. We didn't believe that. 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 from a jury after its other members refused to be in the same room with him. The same day, Small's friend, Paul Castro, had to leave the side of a local TV talk show when studio technicians refused to pin a microphone on him. Can't be on television stations. I can't be in a courtroom. I'm not, you know, where's it going to 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 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 1984 was a last ditch effort to keep AIDS in check, but for many gays, it seemed less an attempt to protect 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'd close those. And when they realized that wasn't going to work, perhaps, well, let's close the Castro. That was a very, very strong fear. In fact, strong enough that people who would have supported closure of the bathhouses backed off. And was, again, one of the reasons why I'd 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 lived 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 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 a fear that they might not have had. My 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. Well, the steward, it's not going to leave it. It was come up and said that I would have to leave the airplane because I would, in case I needed oxygen, no one was able to administer it to 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 age hysteria in their hometown lost everything. One young man who had a family who was beaten up several times, broken ribs, many abrasion, and during one of these attacks, he turned to these people and 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 because she's probably infected. A friend of mine recently wanted his teeth claimed. Now, in 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 to go to a dentist whom he had not informed. Well, healthcare 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 Day 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 healthcare workers because they're afraid of healthcare 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 healthcare workers. They want an impenetrable protective clothing and she wants the legal right to test patients for AIDS. We are still seeing people who are fired from their jobs who are, you know, it's going to mess up your insurance. No matter why, it's going to mess up your insurance 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 of the patient, why is it that the patient's right to confidentiality supersedes our right to stay alive?

No. 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 pneumocystis pneumonia. Ron Brunt needs to inhale aerosolize pentamidine 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. What I got sick with pneumocystis pneumonia. The anticipated life expectancy at that point in time was six months. My physician had the foresight to put me on aerosolized pentamidine 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 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 fall outside FDA guidelines. There's a dilemma that you face when your job is to pay these costs for these experimental or 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 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? We're on volunteers' part-time at AIDS 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 this is this guy's been out of work for almost two years and nobody came forward and told him that he had this benefit. Around the issue of responsibility can be, I mean, what's responsible and what's right is two different things. Brunk fought his own insurance company who eventually agreed to pay for his pentamity. But keeping just one person with AIDS alive for a year can cost $10,000 in medication, doctors' fees, and hospital cost. In the 1990s, caring for America's AIDS patients were on 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, 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's shop story is typical. His insurance company claims his pentamity entreatments, though FDA approved, are physical therapy and 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. It's 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? Do I have to fly over there to Philadelphia and go in there and start screaming at them? If they do, in fact, do not pay for this whole bill for aerosolized pentamity, 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. 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 a problem, the insurance company has no way to operate other than contraction. The problem with HIV disease is that oftentimes the treatment regiments 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 I'm familiar with it and will deny that particular treatment. For years, insurance companies have required blood tests 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 with AIDS. You have to remember 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 am at any kind of agent serving the gay and lesbian community. And some of them feel that it is a right ode to them, that the insurance company cannot do that. And I have to lay down the ground rules firm 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 to underwriting. Insurance companies make money by taking in more in premiums than they pay out in benefits. If too many people they insure get sick, they can raise their income by raising premiums. That can have a dramatic effect on their policy holders. 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 $300,000 a year. How much more are people going to pay for products from just desserts so that I can continue to pay the increased medical costs? 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 than I can. Do you start charging your employees for a 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 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.

Comes back to the taxpayer. I do the taxpayer pays, or we start looking more and more like Calcutta. That sounds good. Let's take a look into your back. Deep breath in and out. I figured out once last year that I spent $14,000 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 poverty down so that I'm eligible for medical, so I'm hoping that at least my AZT will be covered. But otherwise, I'm dependent on my family and my friends and my luck. Well, I'm on a very limited income, so I've got to watch everything. Because by the time I pay my rent, my bills is like $3.50, I'm at least in like $2.50, and that's the EDON, and for any share of costs that I have to do with any medicine, or if I can't get somewhere, if I have to take a cab some days, because I can't get on a bus and that. And so, yeah, the financial thing is a big worry.

The next epidemic we're going to see is an epidemic of AIDS among IV drug users, women and children from the inner cities. Those people don't have private insurance. And in the entire society, we'll have to take care of that under some program. The taxpayers worry comes from the virus's unchecked spread among minorities, especially IV drug users who are notoriously difficult to reach with preventive education. My mom was only 50 years old when she passed away. She's an IV drug user, as far as long as I can remember she was. As far as I know, she was still shooting drugs till the day she died, because when we took her bed apart, we found these needles there. And laying around, I think about the people that she was sharing her needles with, if they knew that she had AIDS. Are they infected with AIDS? I think, yet, still passing the state's virus around. And it's really scary to think about it. It really is really scary.

God bless. You know what's changed. Stop AIDS. One answer to this crisis creates more and cortical dilemmas of its own. Making sure drug users can get clean needles so they don't pass around the virus by sharing syringe. All this doing is given it's okay. It's okay to shoot heroin. Well, heroin problems are not the problem. You know how drug users in every city come here. We still don't have AIDS problems. Many take it through that needle. They're going to throw it down. Some kids are going to cross it. You're not stopping it. AIDS is avoidable. 99% avoidable. Is it fair for me to engage 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. In San Francisco, the health system is strained to the limit. In the next four years, the city will need to pay more than $30 million a year on AIDS health care. 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 with the money. This year, the federal budget for AIDS was $1.6 billion. One percent of the federal health budget, even though the Department of Health and Human Services asks for new news. 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. That's easy. And 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 the 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. 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 of Brendan O'Rourke. When Brendan was five years old, Pope John Paul II singled him out at a special mass in San Francisco, thrusting their all works into the limelight. I didn't have to really wrestle with that decision, whether it's who to tell and when to tell them. People found out in a very positive way. Oh, no, it's yours yet. Among his friends, it has a lot of them.

Brendan has become a kind of folk hero. So, if you renovate some people die, some people don't know, some people don't know. I had a home one today. Really? In San Paul. You know where the kindergarten place is, sir? He had only down there. Brendan's acceptance by his community is not typical of most children with AIDS. Trying to kill everybody else. But you're not going to kill my baby. 1987. World Tennessee. Angry parents fight against letting a hemophiliac boy with AIDS into the local public school. Northern Ford. The family act boys infected with the AIDS virus are banned from school in the face of community hostility. Shortly after they were re-admitted, their home was burned down. I went over there last night and I looked at the house myself and he didn't look at it.

And obviously, fire started in the children's bedroom. Whoever did it was trying to make a point. There's nothing going to associate with them. I personally will tell my child. 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 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. I don't want her growing up with the stigma of this disease. There really is no duty to inform schools, churches, daycare, friends. Get in here.

Put your hand down. Rita Farner is 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. 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. 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. You know, transmittable or not, they don't know. Even 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 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 they're seropositive and they deserve to know whether their babies or 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. Can't think 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 a patient's 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 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 kind of like slapped in the face again with the reality. This child is sick and this child will die. What's this? What's this? That reality is for social workers, Jerry, Dto, PVs to question whether HIV infected women should have children. See, it's suffering that these children go through. 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. Laurie is pregnant for the second time.

She contracted HIV five years ago when she was an IV 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 with any 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 when I'm still healthy. Every social worker and every doctor that we talked to try to get her to have her to have died. And we just, we didn't feel it. I don't know, we didn't feel like that was the correct way to handle a situation. I'll know 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% 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.

I'm really positive that this baby is going to be fine. I'm really positive that if it's not, if it's not, if it's going to be fine, I guess I'll have to deal with that later. If it's not, well, 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 100 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 does thinking it out make it moral? 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 1986. At the moment, I've got splitting headaches, back pains, arm pains throughout my whole body. I'm done tranquilizers, narcotics, everything just for pain. I had chemotherapy treatment at 4.30, starting getting very sick by six, throwing up at seven. In third hospital, or spinal meningitis, doesn't seem to get anywhere with this disease. Lip nodes are so sore, not to buy upstream lymph nodes again. Suicide, lying here just thinking about suicide. They say life is not good. Can they say life is good? Right now, I just want to die. Do you have to do that to prices 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 don't intend to die from AIDS. They've made a pact to commit suicide together when one of them is close to dying. I've caught myself fantasizing about our death, you know, how we're going to do it. When we're going to do it, what a relief it will be. If I've got to fill out this insurance paper 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 on without him. At that point, that was a decision I had made. And the psychiatrist tried to talk me out of it. People in my group tried to talk me out of it, everybody was, you know, well, 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 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. I've been told that any type of suicide is completely wrong. My sister tried to commit suicide a couple of times and I thought, that's not right. You don't need that. But from the first piece of paper that I picked up in red about the information, it seems so normal to me. I thought, what's wrong with me? It's just very normal to me. Our father wanted to help me. Suicide is I think people that know who it is they like to take his own life. The fact that they have AIDS, this means that they're going to be suffering and they're going to decline. And there's probably this point and they'll hope for him to kind of recover.

It 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 to take the through a lives at a certain point in time, they're forced wrong. And like with 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 grave moral evil also. 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. 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. 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 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 in appropriate numbers for pain relief and insomnia. If the patient chooses to keep them, as happens in many terminal patients like cancer patients, then that's the patient's choice, and they are prepared. Keith and Jerry's catalog of elements could justify enough prescriptions to fill a medicine chest. I suffer from chronic fatigue. I have sensory neuropathy in my legs and arms and feet and hands. I have shortness of breath through the pulmonary fibrosis. I have chronic infections in my head chest and bowels of chronic colitis. It's a bridge going through every day.

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 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 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 control drugs and they also could give lethal injections, which not very many patients could do 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 in 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. Okay. Let's have you look at the door. What makes life worth living does not prompt an abstract moral discussion but a set of practical physical considerations. We've had a few friends with AIDS called blind and I think about things like that.

If I was to go blind 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. And I don't know how much more I can take in regards to things being taken away from me physically and especially emotionally. Put your tongue over here. If we say that suicide is acceptable when suffering becomes great, what we're 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 pain killer when he was suffering, he refused what was given to him. Who's a Catholic priest? He's just a person like you or I, or opens a book and interprets what that book means.

In his mind I could read the same passage 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 or any of that. Suicide inevitably involves other people, family or friends. They're the ones left behind. But I haven't mentioned it to my mom. My mom knows that I am a member of the Hamlock Society and what I believe in, but I've never been able to look at her and said, you know, mother, when I get real sick, I'm going to commit suicide. 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. But she'd understand. But I do think she would understand.

It's the uncertainty of family relations that scares Lawrence. 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, we've 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 dog is that? Homewreck. Thanks for the word. The same as following the part. Our life isn't filled with joyous moments all the time. We suffer every day. Life is still worth living. We're not going to 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 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 idea. It's something that we will do when that time comes. 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 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, 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 he was taking AZT, 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 mean, all they're going to do is follow me to quote what they call the end point. And 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 keep the 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 doesn't help us if we're, for example, testing DDI and people on the side are taking AZT instead.

If we see a side effect, then we might make the mistake of assuming that it's from DDI. In fact, it's from some other drug. Dr. Volberdine 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 AZT. It's why we have aerosol pentaminine. It's why we have BDI. 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 AZT, which was developed through a research process involving a placebo control. The fact that aerosol pentaminine was a subject of both laboratory and human experimentation. It was 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. 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 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. The compound Q trials were criticized as unethical for lacking accepted scientific safeguards. But activists aren't the only ones who have been 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 there, I would rather sacrifice the protocol than sacrifice the patient.

Dr. Rick Wollets gave one of his patients two experimental drugs at the same time, even though he knew it was against their rules. I justify because the patient's still with us. Patients 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 in what you've heard already, what the side effects of a new drug are. 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 is DDI, said to be as effective against the AIDS virus as AZT and less toxic. Shown in the left for those that are aficionados of this is the chemical structure of DDI. The new study won't use placebos and people who don't qualify can still receive DDI with their doctors' approval to 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 DDI 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 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's 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 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 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 Randy Schultz. Thank you. Thank you.

Thank you.