Terry Sutton, 1955 - 1989

Terry Sutton, 33, who died of AIDS on April 11, 1989, had quickly become one of the most important AIDS treatment activists, helping to make foscarnet and other treatments more available in San Francisco. He is also the one who suggested blocking the Golden Gate Bridge, which took place in the early morning of January 31.

We spoke with two of Terry's close friends, Marty Blecman and Michelle Roland, asking them to speak about whatever came to mind. The following is part of that 90-minute interview:

Marty: Terry took on the fight of drug access, and went up against what many seem to feel are overwhelming odds, an overwhelming bureaucracy. Terry saw it clearly, cleanly, and simply: Unless I get drug access, the treatments I need, my life will be shorter and I won't be here for the cure.

People need to understand that there isn't an army of activists fighting for this access, and that people can be powerful as individuals. Terry Sutton was not Gandhi, he was just an average guy who used to teach school, who came down with HIV and got his power -- and spiritually wouldn't let a government that did not care about him, wouldn't let even a community that did not seem to care about him, stop him from going after what he wanted for himself, and ultimately for everyone.

Foscarnet could treat CMV, and allow him to go back to AZT, which could keep him alive longer. Terry was determined to stay alive until there was a cure. But he was realistic, that probably he didn't have enough time to do that.

Finally he went into the hospital. CMV was on the ravage, and he was told that he would lose sight in his right eye. So they went to full-dose DHPG -- what he had to do to save his sight.

The result of DHPG was that his white blood cells kept dropping. They went so low that he eventually became septic, had an infection throughout his system. The day came when the doctor said, this is it, the antibiotics aren't working.

Terry died a fighter. He was not giving into death and being metaphysical about it and letting go. He was comatose throughout most of this, but the last day he came back to consciousness, and he was having seizures, and was alert enough to know what was going on in the room, and he was definitely terrified and panicked. He was biting his tongue and grinding his teeth in seizures, and it was horrible; he died a horrible, frightening death.

The irony is that he didn't have a lot of choices. When Terry wanted foscarnet, he couldn't get it.

This has to change. We're in the middle of an epidemic. People don't have seven years (the usual time for new-drug approval -- ed), some don't have two years, some don't have two months. The system has to recognize this and turn it around -- not take five years to turn it around, but do so now.

Unfortunately it's human nature not to feel the urgency to turn it around. Those who really feel the urgency for drug access are those who are going blind, or looking at death's door, and knowing that the only thing that's going to keep them from dying is this drug.

Denial plays into it, thinking it's never going to be my issue. To fight for drug access while you're healthy is saying to yourself that you might end up in a terminal position. This holds many people back from fighting.

Michelle: Terry turned around on the treatment access issue when he was diagnosed with CMV. He knew he could not survive on DHPG -- he would ultimately fail that drug. He would either go blind and die of some other opportunistic infection, or die because DHPG wiped out his white blood cells, which is what happened.

When he was diagnosed with CMV, treatment issues were his real- ity. When the foscarnet issue came along, he said, "Maybe this will work. Maybe I can treat the HIV (with AZT, which can be combined with foscarnet but not with DHPG), and keep the CMV in check. I know that I can't do it with the DHPG, so why not try the foscarnet?"

Marty: Terry studied the Black Plague of Europe. In mass hysteria, people were bludgeoning themselves with clubs, to ward off or deal with the epidemic. In our time that doesn't make much sense. But maybe when history looks back on the epidemic, they'll say, "Everybody was caregivers."

Terry said that he could do without the support of organizations like PAWS, or Open Hand. "Take away everything, and just give me people who will fight for my life, and fight for drug treatments, to give me a drug to help me live longer. I'll take care of the rest of the support."

What's wrong now is that we're eight years into the epidemic, and the caregivers can't seem to take on the fight. Not only are they getting burned out, but they haven't got it through their heads that after they've watched so many people die, when will they say, "Enough is enough," and stand up and do something?

Terry Sutton stood up, and motivated people by his anger and desperation to get a drug, and brought a whole treatment-access issue into the forefront. He had discussions with Dr. Anthony Fauci (Director of the National Institute of Allergy and Infectious Diseases) which moved this man to go back to Washington and speak compassionately, saying he had met with people in San Francisco, and we must change the system. That foscarnet now has "salvage protocols" in San Francisco is directly related to Terry Sutton bringing the fight forward.

People have got to start telling the truth about what's going to stop the epidemic, and not what's going to support it.

Michelle: I saw Terry in Washington at the Quilt. I was very uncomfortable, watching the volunteers in the clean, white clothes running around shoving Kleenex at everybody who let a little tear run down the side of their face. I wondered how many of the people wil- ling to volunteer for this quilt, and for Shanti, Open Hand, and other support organizations, were going to show up at the FDA that Monday?

Terry wouldn't walk on the Quilt. I looked at him and said, "Are you feeling it too?" We sat down and just raged on the side of the Quilt. We saw that we as a community have made this epidemic OK. We take care of ourselves -- not only physically, we've even learned how to take care of our grief. But we're not doing anything to stop the epidemic. It's so infuriating that everybody is patting themselves on the back about how good they are, taking care of each other, and just creating this whole system where it's OK to watch people die and die and die. People had a hard time hearing that. And I told Terry, "If I ever make a panel for you, it's going to say, "Terry Sutton hated this fucking Quilt."

That's when he started thinking of San Francisco as not a model community -- it's a myth. First, we don't really take care of everybody in the community, as we say we do. And second, taking care of people is not stopping this epidemic; in fact, by itself, it's enabling the epidemic to continue. And nobody from the outside has to deal with it, because we're taking care of it and making it OK.

Marty: I could swallow the Quilt more easily if at least they acknowledged that in the face of genocide, we must have a Quilt, to enlighten people. And in the face of genocide, we have Shanti. And in the face of genocide, we have PAWS, and in the face of genocide, we have the AIDS Emergency Fund, because society has looked at us and said, "It's not our problem," because society thinks we're faggots and drug users and blacks and Hispanics, and it's not our problem -- that we're not going to get infected because we're good, straight, clean people. When society takes a segment of the population and turns its back on them, it's genocide.

Many gay men don't want to acknowledge that they're hated, despised enough to be let go by the wayside -- because that goes to the root of their coming out, and acknowledging that they're OK. The layers of denial around the epidemic -- people must start telling the truth.

If Terry stood for anything, it's the truth. He told the truth about himself most of the time, the good and the bad. He told the truth about his doctors, and the treatments, and the issues, and the straight society and the gay society. He kept telling the truth, and he shut a lot of people down.

But he moved a lot of people, moved them into action. He moved me into action. Everybody he touched he moved. Because he told the truth. And they didn't want to hear it, and then they went home and cried because they knew it was right.

Michelle: The sad thing is that when he was screaming and shouting, "Help save my life, now, do it now, I need the foscarnet and I can't do it by myself, you guys have to help me," it didn't happen. I'm glad that now people are mobilized around Terry's death, but it's sad that it had to take Terry's death to mobilize people to make the sense of urgency real.

Terry made the salvage protocol happen, but that salvage protocol didn't work for Terry Sutton, and it isn't working for the vast major- ity of people who want to try foscarnet. They have to get sick enough that the drug probably cannot be effective anyway. Terry knew he had to fail DHPG in order to get access to foscarnet. I watched him day after day in the hospital trace the fall of his white cells, until he said to me, "I'm eligible for foscarnet now."

Marty: "But I'm almost dead."

Michelle: When he told me his doctor was going to get him foscarnet, I wanted to support him, to say that's great, but what happened inside, I felt that if that doctor walks in with that drug I'm going to strangle him -- "How dare you offer him foscarnet now when he has 700 white cells, when he's been saying for six months that he wanted a chance to try this drug."

Marty: Terry heard through one of his Deep Throats that foscarnet wasn't working for people. And the assumption was that they were so sick when they got on the foscarnet that it wasn't working.

Michelle: The other issue was that you have to pay for your hospitalization to administer the drug, about a thousand dollars a day. You have to be in the hospital for the first 14 days of foscarnet.

Marty: We need an information network among physicians. I spoke to an ophthalmologist in Los Angeles. He has a patient failing DHPG, going blind; he's trying to get DHPG to use for direct injection into the eye. The drug company said, "No, you can't have the drug."

The doctor didn't know there were salvage protocols going on in Houston or San Francisco. And he's an ophthalmologist in Los Angeles.

What this comes down to is that if there are five thousand caregivers in San Francisco, there's probably at most five hundred who would actually go to a demonstration, and maybe only 100 people who are politically activated, who are really fighting the epidemic in San Francisco. The proportion who are fighting to stop the epidemic, it's screwed up. People have got to get it, or this thing is going to go on and on.

Michelle: One of the things Terry was able to do was to fight it from many perspectives. He really moved doctors; when he first met them they were willing to do placebo trials with CMV patients. And after Terry had known them for a while, they were willing to fight for ethical protocols.

He motivated me to be able to move from being a caregiver 100 percent, to being able to decide to spend part of my time caretaking and part doing political work, and find more time to do it. He moved many people. There were friends in his life for years who had never done anything political, who were on the roof of Burroughs Wellcome getting arrested, who were at the FDA getting arrested, who were on the Golden Gate Bridge getting arrested.

Marty: Terry said to his mother, "If you're not willing to fight for my life now, while I'm alive, don't you dare come to my death scene."

We talked a lot about what's going on in the community. To be able to fight, you have to have a will to live. I think somewhere deep down, people have lost touch with their will to live. They question what do they have to live for, and do they deserve to live. People have to look at these issues to get in touch with their power. If a government is denying you access, and a protocol is denying you access, and a doctor is denying you access, and they're killing you because you're being denied access, how can you go to healing circles, how can you go to support groups, and how can you learn to live powerfully with AIDS, and live this metaphysically OK life, and go to your grave without fighting? The natural human spirit would be to fight back, to fight the death squads. If people were marching through the streets and gunning us down, we would still need support groups to deal with the grief and the anger around the death squads, but the support groups would be telling the truth about the death squads, and mobilizing people to fight them.

Something has gone wrong -- a mass psychological hysteria... somethZëis wrong with the picture. I don't know how to straighten it out, or who's going to straighten it out.

What people do catch onto are squeaky wheels. Fortunately, squeaky wheels get oiled. It's that simple; if people get diagnosed with HIV and they lay down with it, and they don't stand up for their rights, and they don't stand up for their spirit, and they don't stand up for the right to live, because they deserve it as a human being and a citizen of the United States and as a citizen of the planet, if they don't stand up for their rights, then they will get walked over.

People just have to squeak, and I don't know what's holding them back -- fear, being overwhelmed.

Michelle: Terry ran himself ragged. There were many breakfasts he just didn't have time to eat because he was off to a meeting, trying to straighten this mess out.

And it wasn't just for him. He was very much aware of trying to save his own life. But when some brave soul in the medical community was going to pull strings, and pull illegal strings, to get Terry foscarnet, and he wouldn't do it. If not for everyone, then it's not right.

People have got to start telling the truth. And then the answer to the epidemic is clear, it's give us treatments and keep us alive.

The fundraisers that go on are great -- but God forbid that anyone would do a fundraiser and give a million dollars to ACT UP. It's unthinkable.

They all want to do the same thing, direct service. It's natural to want to help the people who are sick. People should. But they must realize that they'll be helping the people who are sick from now till eternity unless they start helping to find a cure, or treatments.

I'd gladly take pills the rest of my life; if I could play my life out to a basically normal old ripe age, and get all the grey hair I deserve, I'll take drugs for the rest of my life. But I won't sit here and live powerfully with AIDS, and go off to healing circles and enrich my life and smell the roses and go to my death without screaming about it.

Michelle: It's such a complex situation. Where do you fight? We fought the drug companies, and we went to the FDA and fought there, and we meet with Congresswoman Pelosi about drawing up legislation. Terry took the time, and spent the emotional and mental energy, to try to figure out where the appropriate targets were. He had file cabinets full of files, and phone numbers of contacts in every file. He spent hours and weeks and months, sorting that out and educating people. I feel scared about what's going to happen without Terry. We are trying to pick up where Terry left, and not let this work fizzle out, but it's a full-time job.

Terry had the ability to mobilize people, as very few have. People would meet him, and you either fell in love with Terry or you didn't. If you didn't, fine, but if you did, you listened and you were moved. Who's going to be able to do that -- be able to move the doctors, the officials like Fauci, and all the people who came into his life?

Who will take up the fight? It doesn't take very many people. People say, "They'll take care of it, there's ACT UP, they'll fight for me, there's Terry Sutton and he'll fight for me, there's Mobilization Against AIDS and they'll fight for me." People go on with their lives because it's hard enough just getting through the day, let alone taking on the FDA, or taking on a drug company, or taking on a major issue. But one of Terry's favorite quotes was, "If not now, when? And if not me, who?" There aren't a lot of people out there doing it.

The philosophy of Terry hopefully will live on, and the people he inspired will continue to inspire other people, and the fifty thousand people who have gone before Terry will not be forgotten.

Terry didn't have a lot of patience for PWAs who weren't fighting. He would get angry with them. "How can you sit there and get infused every day, and throw up your guts on the floor, and not be willing to come to San Francisco General and sit down on the floor and get arrested? What have you got to lose?"

What do people have to lose -- except their denial, maybe, and their fears? And what they have to gain is everything. You gain victories, you gain power, and you gain personal insight and knowledge, you gain control over your life, you gain hope, you gain all kinds of things from action. Plus you gain just getting yourself out of bed to do something.

How many people died of pneumocystis while aerosol pentamidine was hanging out there for two years?

Michelle: He was forced into wanting that diagnosis. He didn't really have the option of going to work, but as we know, people with ARC are not acknowledged as disabled most of the time. There's no way Terry could have worked 40 hours a week.

Marty: He was wasting away. Work was going to start in September, and he was freaked out. He was also freaked out when he got his diagnosis, but there was also a sigh of relief, "Now I can fight, and get paid for it" -- barely.

Michelle: Then he had to ask how he could live on $600. a month.

Marty: When I asked him to be my roommate, he cried.

Michelle: Terry was involved in the formation of AIDS Action Pledge, and Burroughs Wellcome was a kick-off.

Marty: Terry was one of the first Shanti volunteers, back around 1982 or 1983, before he knew he had HIV. He was one of the first volunteers at Kaiser who supported the AIDS ward.

Michelle: He did the Kaiser work up through his diagnosis. And he would come home after going to Kaiser, and he had to talk about what he had just seen and experienced. One of the problems that Terry had, and one of the problems in the AIDS activist movement, is that he couldn't talk about his emotional experience with activists. AIDS activists are very separate from the actual experience of living with AIDS. Terry was one of the rare people who could do both of those things, but had a hard time finding people who could support him and listen to the terror and the anger and the fear and the sadness that came in that work, helping people die.

Marty: He did a workshop by Sally Fisher called the AIDS Mastery. A friend said that after the mastery, he got in touch with his power. Before the mastery he was very shy, and quiet. The mastery lit his fire.

When the "Midnight Caller" episode came up, Terry was the first one to light everybody's fire; he found out about the script, and plugged everybody into it, and became a negotiator.

After "Midnight Caller," he took on foscarnet, which led to the sit-in at San Francisco General -- which of course brings up the (blockade of the Golden Gate) Bridge.

Michelle: I remember Terry saying that we had to do something, something really radical to shake people up; that we have to increase the militancy in the AIDS activist movement, we can't just sit in front of empty buildings or even full buildings, that's not doing it.

Terry's phrase around the Bridge was, "Bridge the treatment gap." Because there were many people from different organizations represented in the Bridge, people wanted it to include more issues, so it became "AIDS equals genocide."

On the day of the Bridge itself Terry was really sick. He went out there and sat in the fog, and got arrested. And after the Bridge, when everybody was celebrating and feeling really good about ourselves, Terry came home and went to bed.

In my mind, the Bridge was Terry Sutton. That there were people in the community who hadn't been involved in AIDS activism before, who were willing to take the risk of shutting down the Golden Gate Bridge, infused him with a lot more hope, more belief in the possibility that people would come around and start doing this work.

And partly the Bridge came off out of respect for Terry. People knew how important it was to Terry.

Marty: The Bridge was a tremendous success. The media hoopla that swelled around it was pretty much expected. It was expected that many in our community would snub their noses at it at first, and say that these stupid people were going to turn everybody off. And it was also expected that they would turn around and get it, after they had thought about it for a while. It's like, "What have we got to lose -- and if not now, when?" And as for those poor commuters who were inconvenienced for an hour and a half, well, excuse me, my life's been put on hold.

Michelle: The power that it had in the AIDS community was more important than in the general community. It shook people up in the service community, and in the Democratic clubs, and even in the AIDS activist community. It's a challenge. It said that we have to do things that are more militant, and we have to be more committed.

Marty: More people have died of AIDS in this country than died in the Vietnam War, but with Vietnam it was easier to connect, to find the enemy.

In the AIDS fight, there might be a problem because the people who feel the epidemic the most are in a constant state of mourning. They're depressed, and may be shutting down. If you lose a friend in February, and lose one the next month, and again the next week, and you can't even get through the grief and the mourning process of the last friend, emotionally you start to shut down. Maybe that's what's going on.

Michelle: The other difference is that it's easier to fight for other people. When the Vietnamese are the victims, we can get out and say that our government is wrong. But when we're the victim, saying that our government is wrong is acknowledging that our government doesn't give a shit about us. People can't do that. People are so totally invested in believing that the government and the research community are doing everything that they possibly can to end this epidemic, and you guys just have to be patient, and it's a virus and we don't know that much about viruses, and on and on.

It makes perfect sense why we're so invested in that. It's terribly painful to think, "My country, my government, and my society are willing to watch me die."

Terry pushed us to confront AIDS as genocide. Even some activists felt, "Intellectually I can get it, but emotionally it's so horrifying, that I want to figure out all the rationalizations why it's not true." Terry's the one who said, "You've got to tell the truth, this is what it's about."

Marty: People shut down. I can talk about how Terry died, how gruesome it was, and people still keep open and listening. And I can talk about emotional things, and people still listen. But when I talk about politics, and about genocide, and about maybe getting up off their ass and doing something to stop the epidemic and facing the reality that maybe we're disliked, then they shut down. I see them drifting off into space, and looking the other way, and feeling uncomfortable, and wanting to get out and away from me. That's when I lose it. What scares me more than having HIV is watching people shut down to the truth.

(We asked about the scattering of Terry's ashes at sea.)

Michelle: We had balloons with "Silence Equals Death" written on them, and we let them go symbolically, to let go of Terry a little bit, of the grief.

From the time we pulled out of the dock and headed toward the bridge, it was the first time since he started dying that it felt really real. I guess that's why we do these services and go through these rituals, because we need ways to accept what's happening, and to deal with the reality of it. I was very upset and I cried almost the whole way to the bridge. And then when they shut off the motor under the bridge, to be underneath the Golden Gate Bridge to say good-bye to Terry was such a powerful and sad and exciting experience. I felt it from everyone; the grief on that boat, and the pride, to be underneath the Bridge doing this for Terry.

Marty: We did an "Act Up, Fight Back, Fight AIDS" chant under the bridge, and another chant for Terry.

Marty: Terry was a teacher and emotional support person, and he urged people continuously to get their powers of attorney signed, and their wills taken care of. And because Terry constantly joked about having just a mild case of AIDS and not having to get this together yet, he never did get together his power of attorney or his will. The havoc that caused throughout his hospital stay when he went unconscious was horrible -- practical and emotional. It was very hard on his friends and caregivers, and on his family, and on his doctors, trying to make decisions and not knowing exactly what he wanted.

Don't stay in denial about getting your powers of attorney and wills done, because "If not now, when?"

Michelle: Terry asked three of his friends to do the power of attorney. And I believed and he believed that he would get out of the hospital and we'd do that. Guess what, less than one week later he was unconscious, and it didn't happen. Thank God we'd had the conver- sations, he had them with the three of us, so we knew what he wanted. We were able to work with the doctors and the family.

Marty: The obit we wrote, it was not, "Terry died peacefully in the arms of his friends and his lovers and went peacefully to the light beyond." It was basically, "He died a gruelling, uncomfortable, drawn-out, horrible death."

Michelle: That truth has to be told, too. We all live in this illusion that there's this peaceful passing. There was nothing
peaceful, nothing OK or reassuring, about Terry's death.

Marty: If more people were scared -- it's like, "Don't make me not scared of death, please. Don't make me not afraid to get sick, and to watch my body fall apart. Don't make me not scared to not be supported, and to be financially broke." We're putting bandaids over these natural reactions to the holocaust. Maybe we've put too many bandaids on people. I'm plugged into the AIDS Mastery, and I've seen hundreds of PWAs come through and learn to live powerfully, and get their lives back, and get out of that state. But to get beyond that, and to fight, is a different story.

And that's the only way we see out of the epidemic. Unless a miracle happens.

Michelle: And even with a miracle, it will take seven years to get that miracle out.

Marty: And if compound Q is the answer, God forbid you are on DHPG or foscarnet or whatever. Who are they going to exclude from the protocol right off the bat, and when will they make it acceptable and accessible to everybody? When do the HIV babies get it?

We're talking about people shutting down and not wanting to stand up and fight for foscarnet, when too many gay men in this town won't even get tested. How are they ever going to stand up and fight? How do you move these people from not knowing what their status is, to fighting to save their lives?

People are not telling the truth, all the time, all the truth. They're putting it in candy wrappers.

And when you know the truth, and you don't get the support of people around you, you start to think you're crazy. And Terry Sutton would listen to people say, "You're crazy," and then look at it and say, "No, no I'm not. This is the truth."

If people want to make donations in Terry's name, they should donate to ACT UP. That's probably the closest thing to him.

Marty: His experience in teaching emotionally disturbed children got him his power. All of us to some degree are emotionally disturbed around AIDS. He got us to understand. To get an emotionally disturbed child to calm down and listen to something -- he got me calm enough to accept the fact of genocide, he affected people as a teacher.

Michelle: And he could play, and he could be crazy, and silly, and have fun, and really act out. That helped us emotionally, too, because there was all this heavy shit going on, and then we could just crack up, with Terry.

Marty: He was happy, actually. He was a pretty happy guy.

Michelle: He had a lot of friends.


Statement of Purpose

AIDS Treatment News reports on experimental and complementary treatments, especially those available now. It collects information from medical journals, and from interviews with scientists physicians, and other health practitioners, and persons with AIDS or ARC.

Long-term survivors have usually tried many different treatments, and found combinations which work for them. AIDS Treatment News does not recommend particular therapies, but seeks to increase the options available.

We also examine the ethical and public-policy issues around AIDS treatment research.