September 12, 2013
The death of veteran treatment activist Spencer Cox on Dec. 18, 2012, at age 44 sent a shock wave through the HIV community. His passing has lent urgency to the field of research on the effects of "surviving a plague" on longtime HIV survivors, helped reconnect seasoned activists with one another, and led new generations to engage with our community's brutal history. Even mainstream media outlets weighed in on the implications of Spencer's death from a disease that is no longer a death sentence due in large part to his own work. And as of June of this year, a prominent New York City health center carries his name. Spencer was "a fighter ... an activist," in the words of Peter Staley; he was also a friend, a brother and a son. TheBody.com sat down with Staley, Spencer's fellow ACT UP alumnus, Treatment Action Group (TAG) cofounder and friend; and Beverly Cox, Spencer's mother, for this conversation about Spencer's life and legacy.
Terri Wilder: Beverly, can you tell us about Spencer as a kid? What was he like?
Beverly Cox: Spencer was actually a wonderful small child. I had no problems with him. He was smart; he was funny; he was very well disciplined. It was only when he hit puberty that ... [laughs].
But you know, I was thinking about a story the other day. Of course, I think of Spencer every day -- and things come to mind that I'd thought I had forgotten about him.
He decided when he was 6 years old that it was time to run away from home. I guess he had seen it on TV; I'm not sure. He got a paper bag and put a few things down in the bottom, and he announced to me he was running away from home. I said -- and I was very serious with him about it -- "OK. Now, how are you going to go? Are you going to walk, or are you going to take MARTA?" MARTA is our transit system here in Atlanta.
He was very serious. He said, "I think I'll take MARTA." I said, "OK. Well, how about taking your dog with you when you go?" He had a little miniature dachshund. He said he would.
I said, "You can't take a dog on MARTA. So what are you going to do?"
He says, "I'll tie her to the back of the bus." I could just visualize this MARTA bus with this little dog, with about two inches of legs.
So I said, "OK. While you're at it, how about taking your brother?" He was 2 years old. He said he would. He went in and he got Nick about three diapers and put it in the bag.
I looked at my watch and I said, "It's almost time for me to start cooking. So I wonder if you guys are going to eat with me, or if I'm just going to be cooking for myself."
He says, "We'll eat with you."
I said, "OK. I'll cook for us all then." So I cooked and we sat down to eat, and we ate. I looked outside and I said, "It's dark. Are you going to go ahead and run away from home tonight, or are you going to wait and get an early start tomorrow morning?"
He looked out and he said, "I think I'll wait and get an early start tomorrow morning." I said, "OK."
Three weeks later, I unloaded the bag. And he never mentioned running away from home again.
Terri Wilder: That's funny.
Beverly Cox: Yeah. He was a hoot. He was. When he was 2 years old, at Christmas, he got a record player. You remember the big records, LP records? And we bought Bedknobs and Broomsticks for him. He loved that record. He memorized it and would sing it, complete with English accent.
Peter Staley: Beverly, I didn't know that story. But you'd be interested to know that Bedknobs and Broomsticks was one of my favorite movies as a kid.
Beverly Cox: Spencer loved it. And who sang? Was it Julie Andrews?
Peter Staley: I think so, yeah.
Terri Wilder: We know that Spencer was involved in ACT UP starting around 1989. Peter, you can correct me if I'm wrong -- was he the youngest person to join ACT UP?
Peter Staley: I think Garance [Franke-Ruta] was younger. And there may have been one or two other less prominent members that were around Garance's age. But he was certainly right down there. He was a lot younger than the average.
Beverly Cox: He was about 21 at that time, wasn't he?
Peter Staley: Yeah.
Beverly Cox: That would have been about right. Because he left Bennington College after three years; and that would have been 21.
Terri Wilder: Beverly, when you were raising Spencer as a child, did you see leadership skills in him early on?
Beverly Cox: Oh, yes. I used to say to him, "Spencer, you should be an attorney." Because he loved -- and I don't know if you saw it, Peter -- a good debate.
Peter Staley: Yes!
Beverly Cox: He always wanted to be right. And that is not all: I loved a good debate, and I wanted to be right. So the two of us would debate -- we weren't angry at each other; this was as he got older. He would say, "Facts, facts, lady. If you can't quote facts, don't say it." We would see who could out-best each other. It would drive his younger brother Nick absolutely nuts.
As a matter of fact, to give you a story on that, he and I were arguing once when he was in high school -- we were arguing the welfare system. I was arguing that it almost enslaves people, and it gives them no incentive to get out and take care of themselves, or at least try. And he was arguing the opposite.
The next day, he came home from school and he tells me that he had gotten into the same argument with his history teacher. (I'm sure he started it.) His history teacher was arguing for the welfare system, and Spencer was arguing my argument. I said, "Wait a minute. Yesterday, you were arguing for the welfare system!" And he says, "I always take the opposite argument so that I can listen to the person's argument, to see if I think it's valid or not." I thought that was pretty interesting. He would argue what he didn't really believe just to see what the other person's argument was.
Terri Wilder: It sounds like he'd already kind of started into what ACT UP is known for, which is knowledge equals power. If you don't know what the other side thinks, then how can you come up with a strategy?
Peter, do you remember the first time you met Spencer?
Peter Staley: I don't. I remember definitely getting to know him in '89. I mean, it did not take long. And that's unusual. The ACT UP membership had grown so large by '89 that I was very selective about who I noticed, and who was on my radar. But Spencer got on it very quickly. And it was through the Treatment and Data Committee [T & D], which was easily the most intimidating committee to join within ACT UP. He jumped right in.
Beverly Cox: That would be his forte, is to jump into something he thought was complicated.
Peter Staley: Right. And so, along with Garance, they were by far the youngest members of that committee. But what hit me so quickly was how he seemed almost older than the rest of us. First off, he had more, kind of, classic gay knowledge than anybody in the room, as far as Broadway and movies -- just mind boggling. He would regale us with lines and humor from all of that rich history. So we would always feel like we were naive in that regard, or younger in that regard than he was ... or, of a younger generation. He seemed like he was out of the '60s or '70s, as far as the gay world.
But he was not intimidated by the brainiacs in T & D. He jumped into the debates right away. And he jumped into the science right away. And that was your path into that club. If you had the smarts and you learned the science, you rose quickly in Treatment and Data. You were invited to the meetings in Washington with Tony Fauci [head of the U.S. National Institute of Allergy and Infectious Diseases], and with Frank Young, originally, the head of the U.S. Food and Drug Administration [FDA] -- and he would wow them. I mean, he was just fearless. He was not intimidated by conversations with people older than him.
Beverly Cox: He would not walk into a meeting like that without being thoroughly prepared.
Peter Staley: Exactly.
Terri Wilder: Peter, what do you think was the biggest contribution Spencer made on that committee?
Peter Staley: By far, the biggest contribution was kind of a pivot that he was definitely a leader in what occurred in treatment activism, in general, around 1990 or '91. It was beginning to dawn on us that the early demands of ACT UP had been naive. The cure was out there. [Of] the hundred-odd compounds that had been floating around in the literature and that may have had a test tube study attached to them, that one of those was the cure; we just had to scream at the system loud enough to get them to approve it -- test it quickly, and get it approved.
As Spencer and others got deeper and deeper into the science, they realized that we had been naive. They started pushing ACT UP and the rest of us -- and I never considered myself in Spencer's class, or in Mark Harrington's class, the ones who became completely comfortable with the underlying science. I was more a strategy guy. But they started pushing us to realize that we had a much harder game in front of us, and that the only path forward was actually using classic scientific method and epidemiology, and biostatistics. They really had an emphasis on the statisticians and what they were saying, in what we needed to do as far as clinical trials.
They said there was no shortcut around going back to the basic science, getting the answers, and figuring out what exactly is going to work. But once you accept that you could speed that whole system up; you could push every pressure point along the regulatory review and the negotiations between companies and the FDA, and between companies and the U.S. National Institutes of Health [NIH], and you could grease the wheels. But there was no getting around that we had a basic science issue, and that we had major scientific roadblocks that we had to work through.
He became religious about this. And it goes back to what Beverly said: data, data, data.
I remember, late in the game, when TAG took a very, very controversial position of actually opposing Hoffmann-La Roche's attempt to get one of the first protease inhibitors, saquinavir [Invirase], approved using accelerated approval before they had done the clinical trials necessary to really show how we would use that protease inhibitor to save lives. I said, "We're going to have every AIDS activist in the country screaming at us. Are you sure we should be going down this road?"
And, like a debater, Spencer explained it all to me in a way not couched in science; it was half that, but the thrust of his argument was the morality of what we were doing, the ethics of what we were doing, and how we were serving a greater good by the position we were about to adopt. We were abandoning a system that was serving the privileged few who had great HIV doctors, and we were pivoting to a system that advocated for the greater good -- including the single mom in Harlem that was connected to an HIV clinic up there that didn't have the luxury of tailor-making her regimen with an HIV doctor in Chelsea, or in Greenwich Village. So it was a beautiful, ethical argument. And we went with it. I think we were on the right side of history.
Terri Wilder: Beverly, what did you think when Spencer started to become an activist? Did he tell you about the work he was doing?
Beverly Cox: He did. And, actually, I have a cardiologist that's a client of mine; and we were discussing this. He said to me, "Did you realize that Spencer was going to FDA? And did you realize he was going to Congress?" I said I did; he told me about it.
He said, "But you didn't realize the impact?" I said, "Correct." I had no idea of the impact.
Peter Staley: It's a common story: A lot of our families were quite stunned when they saw How to Survive a Plague, at the impact of it all.
Beverly Cox: I had no idea until after he died. I mean, I was stunned at, all of a sudden, his notoriety. And, going back: Spencer was very out in high school as being gay. That was not a time when most people were out, back in the early '80s.
Peter Staley: Right. He came out early.
Beverly Cox: I had never thought about it. After he came back and lived with me, it occurred to me that we really had never discussed whether he had had problems in high school. And so I thought about that one night, and I said to him, "Did you have problems in high school with being out and gay with the other kids?" Because a lot of times, they're bullied.
He said, "No. No, I didn't. As a matter of fact, I had several football players come to me and say, 'If you ever have any trouble, let us know. We'll take care of it.'" But I think it was his personality.
Terri Wilder: Beverly, do you remember the day he told you that he had been diagnosed with HIV?
Beverly Cox: He didn't tell me. He never told me. The way I found it out was online when I saw he went to Bennington and spoke about living with HIV.
Terri Wilder: Did you bring it up to him after you saw that?
Beverly Cox: No, but I knew it and eventually he knew I knew it. We never discussed it.
Terri Wilder: Never? Not even when he was in the hospital right before he died?
Beverly Cox: I wasn't there right before he died. But, no. When he came back here, yes. See, he lived with me for three and a half years. So, of course, he knew I knew it then. Because I had to find a doctor for him. And he was very careful. I think he had four operations while he lived with me. He was very careful when I was trying to help him change bandages or so forth. You know, "Wear latex gloves. Be very careful."
So, at that time, he knew I knew it, and it was all out between us.
Terri Wilder: Interesting. When Spencer died in December 2012, it was, of course, devastating to you as a mother; and it felt like the whole community reacted. Can you share, if you feel comfortable, your experience of losing a son at such a young age?
Beverly Cox: It is a young age. [Though], truthfully, I always expected him to go before me -- in the back of my mind.
Terri Wilder: Why is that?
Beverly Cox: I don't know. I just knew it.
One of the things I tried to do was to protect him from himself. That was hard to do as an adult. I don't think he understood: He hurt himself probably more than most people hurt him. And I couldn't protect him from that. I think that's why, in the back of my mind, I expected to outlive Spencer. But I wasn't expecting it at this time.
When he left my house, he was really in good shape. He weighed 170-something pounds when he left my house. He and I spoke, or texted, or talked, or emailed, every two to three days after he was in New York. So I was unprepared at that time, because I had spoken to him on Friday. And he was coming home for Christmas. I said to him, "Have you thought about what you want for Christmas?"
He said, "Well, my Kindle died." I said, "Oh, great. I'll get you a Kindle." And I said, "Be thinking about other things you want." He said, "OK." He sounded great.
If I had known on that Friday what I knew Monday, I would have been there.
Terri Wilder: So you talked to him on Friday and he died on a Monday?
Beverly Cox: He died on a Tuesday. I got a call on Monday, though, saying he was not going to make it. But he had asked them not to call me. His doctor and I spoke about this. She said, "It wasn't that he didn't want you to know. He didn't want to worry you."
I said, "I know that." And I did know that.
Terri Wilder: Peter, what was the reaction from the community when Spencer died? What were your thoughts?
Peter Staley: It was a mix of emotions. It was an absolute shock to everyone. He had come back to New York only a couple of months before; he was at the red carpet premiere of How to Survive a Plague, and was telling everybody how he was very much looking forward to walking the red carpet at the Oscars.
Beverly Cox: And he looked better, don't you think?
Peter Staley: Yes.
Beverly Cox: I mean, he looked healthy.
Peter Staley: Yeah; and he seemed to be optimistic for the future.
We got that word that his roommate had taken him into the hospital and there was a small group of us who instantly created a Facebook message thread to monitor the situation and start a rotation of friends to visit him. It looked like he had really started springing back within 48 hours, and was out of the woods.
That was Saturday. I think he was checked in on either a Wednesday night, or a Thursday night. And then Monday, the shit hit the fan.
A bunch of us started getting to the hospital on Tuesday. Tim Horn and I were the only ones that got there in time.
Beverly Cox: I was going to ask you about that. How many people were there when he died?
Peter Staley: We were not in the room when he died. We got there; we were allowed to see him before he died.
Beverly Cox: OK. But he was not aware?
Peter Staley: No. They had been reviving him through the night in order to try to keep him going until you and Nick got there.
Beverly Cox: Right. And I knew that. We got a call. I got a call during the middle of the night.
Peter Staley: By the time Tim and I got there, they had done at least three long CPR sessions. And when we got there, they were into their fourth; and it lasted about a half hour.
Beverly Cox: What time did you get there? Do you recall?
Peter Staley: Like 8:00 in the morning, or 7:30.
Beverly Cox: OK. They officially said his death was at 10:15, I think.
Peter Staley: Right. So we waited until they had finished this long session of CPR. Then they finally said, "OK, you can go see him." And we went in there. He really looked like he had been through the wringer. He just wasn't there anymore. He was on complete life support, and it looked like he had been through the wringer, as far as them continuing to do these, kind of, really brutal sessions of CPR.
Tim and I said, "Please, don't do any more of those."
And then, within 15 minutes, they came out and said he was gone.
Terri Wilder: After Spencer's death, people seemed to reconnect together -- folks who had not seen each other in a while. And the Medius Working Group was formed. I know that they had an event in May addressing long-term survival. It seems that Spencer's death has brought the community back together. It seems, as tragic as it was, there was a purpose to it. It almost feels like it stimulated something to happen.
Peter Staley: Again, it's horrible that a tragedy [was needed to bring this about], but so much has come out of this, and continues to, that it's very ... it's a wonderful coda; let's put it that way.
Beverly Cox: I continue to be amazed myself. I've talked to friends and I've said, "It's like he's still giving."
One of the examples is, I have a client who is a therapist. Actually, I'd never met her. We'd spoken, but it was only on business. I never said anything personal to her. I never told her I had children -- nothing.
So this year, she mailed her information in and then she called me and said, "Could I come pick up a copy of my tax return?" I said, "Sure, and we'll get to meet." So she came in and she sat down and we started talking. She's very interesting.
I said, "I have a son who passed away right before Christmas."
She said, "I know."
I said, "You know?" She didn't even know I had children.
She said, "I connected the dots. I started reading about him." And I showed her the playbill of his memorial. She said, "Do you mind if I have this? Do you have more?" I said, "No, you're welcome to keep it."
She went back to her office and she emailed me. She said, "I so appreciate your speaking to me about Spencer. The reason I asked you for a copy of the playbill is because I have patients with AIDS. I'm going to use this to show them that just because you have AIDS does not mean you can't accomplish things."
She'd seen the interview that David France [director of How to Survive a Plague] put out about his thoughts on life; she said, "I'm going to use that in my therapy also." And I thought: He's still helping people.
Peter Staley: Some of the things that have come out: First of all, the memorial was extraordinarily beautiful.
Beverly Cox: It was stunning.
Peter Staley: There was a line around the block. I was stunned by the turnout. And everybody afterwards was like, "We really miss each other." So it was a wake-up call that we had all lost touch. We had lost touch with Spencer. And we lost him before we knew it.
So some ACT UP alumni formed a committee, and started planning for a series of reunions, including the first one they did the weekend before Gay Pride, which was the quote-unquote, non-reunion reunion, that was over 350 ACT UP alumni, including Larry Kramer and all the regulars. That was just beautiful, absolutely beautiful. And they plan on doing more events in the future.
One of the things that Spencer pushed for in creating the Medius Institute for Gay Men's Health was actual research. "Give me the data," right? He wanted research really defining what the needs are of his generation. So Judy Rabkin, who is a great AIDS social science researcher, has been working with TAG to design a social science clinical trial, which has already gotten institutional review board approval. It will interview at least 200 ACT UP alumni, with a control group, to see how we are doing as a group, and what our needs are, and what our issues are -- both the good and the bad -- and how we were affected by that experience. So that study is going to happen.
Beverly Cox: I think Spencer would have been so proud of that, and would have loved to have been in the middle of it.
Peter Staley: Yeah. I mean, that's what he was calling for.
Beverly Cox: As a matter of fact, when he was living with me, we spoke about the deaths. I said, "Spencer, I'm sure you saw so much that a person really shouldn't have seen." And he said he did.
Peter Staley: The community forum that the Medius Working Group put on in May at Baruch College, titled "Is This My Beautiful Life? Perspectives From Survivors of the AIDS Generation," that had over 500 people in attendance, that continues to have some extraordinary ripples.
Recently, Medius Working Group called together, at this gorgeous conference room at Broadway's Equity union's meeting room, off Times Square -- we asked all the co-sponsoring organizations of the forum to send their high-level leaders, their CEOs. And we got amazing attendance. GMHC was there; amfAR; the LGBT Center; Sage; Harlem United, Callen-Lorde Community Health Center -- and on and on. All these AIDS groups across New York City came together.
We threw it to them and we said, "Listen. What did you hear at this forum? And what are you doing now to meet the needs of this generation? Or what would you like to do that we can all figure out how to implement?" We even had representatives from the City Council there, and from Christine Quinn's office, in case there were things that would be a good match for New York City to help fund. There were some great ideas put forward. And there's going to be a lot of follow-up on that that's going to happen.
But one of the most interesting things that happened that night was that these groups kept remarking, as the night went on, how useful it was to hear from each other on what they were doing. I was on the stage, and I was stunned. I said, "You mean you guys don't meet on a regular basis?" These are the leading AIDS groups across New York City. I thought that there was some mechanism by which they were sitting across from each other on a regular basis. But there wasn't. And I was, like, wow.
Spencer has gotten everybody in the room. And one of the bullet items that came out of that is we're going to set up some sort of mechanism, a New York City AIDS lobby, as it were, where these CEOs can be in touch with each other on an ongoing basis, and coordinate their efforts. You would think that that had been happening, but it hadn't. And now it will. And this all came out of that. So it's incredible.
Beverly Cox: His death, as awful and as shocking as it was to us, it is a comfort to me to know that it did stir things up like this.
He did miss the camaraderie, I can tell you, of the group. Because I think he lost that.
Peter Staley: Yeah, we all did. We all did.
Terri Wilder: I was at the event in May at Baruch College. One of the things that I walked away with -- and Peter, you even addressed it when you were speaking on the panel -- was that a lot of this is about trauma. It may be untreated post-traumatic stress disorder [PTSD]. And calling for trauma-informed care, and being aware of the long-termers who "survived the plague," that have been forgotten. I've certainly had friends in my hometown of Atlanta, Ga., say, "I don't feel like there's a place for me. I got infected in the '80s or the early '90s; and when I walk in, I feel like I'm just the old gay guy with AIDS. They don't really know what to do with me. I witnessed so much, and I don't really have anybody to talk to about it with."
Peter Staley: Right.
Beverly Cox: That's the part that I was aware of with Spencer. I said, "I know, even if it wasn't AIDS, whatever it is; if you have people dying around you, it has to affect you mentally."
Terri Wilder: Right. Well, another thing that came out of the unfortunate death of Spencer was that the Center for Comprehensive Care [CCC] renamed their center the Spencer Cox Center for Health. Beverly, how was that name change brought to your attention?
Beverly Cox: It was brought up to Nick first. I think they didn't know how to reach me. Dr. Victoria Sharp [director of the Spencer Cox Center for Health] sent Nick an email. He forwarded it to me and called me. We discussed what an honor that was, and we were very excited about it. At that point, it was like: He really did do something that changed the world.
Terri Wilder: Peter, what did you think when Dr. Sharp said, "We want to rename our center and name it after Spencer?" And what were people saying in the community?
Peter Staley: Dr. Sharp had given me a heads up. It was a shock at first. It was, like, wow. And then it was: Yes, this is right. This is right.
I gave some remarks at the opening, about this being a pattern now. They're naming stuff after us. And they should. It's a good thing. It is good that Spencer will be remembered. It is good that all of us that did this work will be remembered and are not going to be some sort of forgotten generation, and forgotten movement.
I love the stories. Talking to the staff who have worked at CCC for years, who really didn't know of Spencer's story, and when Vicki started pushing this, they were like, "Really?" And the more and more they learned, and then, after the opening, the way patients have responded to it that come to the center, and the way that they're now using it in their work when they do public speaking, etc., to explain their mission, they're just absolutely thrilled at the renaming.
So you can really see how it's just right. It's a perfect fit.
Terri Wilder: At the name-changing event, on Tuesday, June 11, at which the Center for Comprehensive Care at St. Luke's-Roosevelt Hospital in New York City officially became the Spencer Cox Center for Health, one of the speakers mentioned that Spencer would probably roll his eyes about the whole thing.
Beverly Cox: He would. He would have!
Terri Wilder: Deep-down inside, do you think he would really roll his eyes -- or if he would be like, "Wow"?
Beverly Cox: You know what I think? I truly do not believe he understood the impact he made. Do you, Peter?
Peter Staley: I disagree with you on that. If you see the interview he did with David France, I think you see it there. I think he knew he was part of something great.
Terri Wilder: There's a whole community of people who are learning who Spencer Cox is, because they're now coming to get their HIV medical care, or their care for another chronic condition, from a clinic that bears his name. When you think about the name change, what would you want the clients who come to Spencer Cox Center for Health to think and know about your son and friend?
Beverly Cox: To know that he was kind and generous, and to know that what he did was unselfish.
Peter Staley: I would want them to know he was a fighter. He was an activist. And that they have the ability to live beautiful lives because of the work he did.
This transcript has been lightly edited for clarity.
Terri L. Wilder, M.S.W., is a director of HIV/AIDS education and training in New York City.
Born and educated in Georgia, Beverly Cox was the first and only female majoring in accounting at her university at the time, but she held her own -- a fact her sons would never have disputed.
She married, had two sons and later divorced when her sons were ages 1 and 5. These sons became her focus, especially since she was both physically and financially responsible for them. After gaining her required accounting experience and acquiring her CPA license, she started her own CPA private practice in 1983 and is still operating this firm today in addition to managing several rental properties she owns.
Beverly is exceptionally proud of the successes her two sons have attained. She lost her older son, Spencer, on Dec. 18, 2012.
She enjoys reading, hiking and traveling, has visited all the continents except Antarctica, and particularly enjoys her visits with her son Nick who lives in Africa.
Peter Staley has been a long-term HIV and gay rights activist, first as a member of ACT UP New York, then as the founding director of TAG, the Treatment Action Group. He is a leading subject in the Oscar-nominated documentary How to Survive a Plague.