December 12, 2012
Gil Kudrin grew up with HIV. He was diagnosed in the early '80s at only 18 years old, and has outlived many of his peers. At 53 years old, he has marched with ACT UP, helped found Nightsweats & T-Cells (which employs HIV-positive people and gives them work skills and experience) and has raised two young, homeless boys as his own sons.
Believe it or not, he still takes the first HIV medication, Retrovir (zidovudine, AZT) -- he experiences no side effects, has not developed resistance and sees no reason to stop. As he would say, "If it isn't broke, don't fix it." What Gil does think needs fixing: this country's public health response to HIV, and through a life that has seen loss, happiness and everything in between, he is still a fighter who is devoted to helping others who are affected by HIV.
My name is Gilbert Kudrin. I go by Gil. I'm from Cleveland, Ohio. I'm a 53-year-old, gay man. I have full-blown AIDS. I actually have been HIV positive since 1979. The second time I went to a gay bar, I met a guy who I fell in love with, who was about five or six years older than me. He has since passed away of AIDS. I didn't realize that when I thought he was off on business trips in New York City, he was actually at the bathhouses, or in the bars.
Very early on in our relationship, he got very ill and nobody could figure out what was wrong with him. He was in the hospital for about a month and a half, and he was in intensive care. They did an ileostomy on him, because they thought he had Crohn's disease. It turned out, he probably had CMV colitis. About a month or two after he got out of the hospital, I got very ill. My best friend was a doctor. I worked in a hospital for almost 20 years. He kept doing blood work on me and kept saying, "There's something really bizarre, wrong with you. And I can't figure it out. I've never seen anything like this."
In 1981, I can remember sitting in my apartment. By then I had broken up with this guy. I was watching the evening news, and I heard about what was then called GRID: gay-related immunodeficiency syndrome. I was like, "I'm going to die." I had already started experiencing really bad night sweats. I had swollen glands for several years. I was constantly getting staph infections, strep throat. Working in a hospital, I was exposed to a lot of pathogens that most people would not be exposed to. I worked in the maintenance department and was going to school at night to become an engineer. So that was how I figured out I had AIDS.
At that point, did you know anyone else who was sick? Did you feel like you were the only person besides these five or 10 men in Los Angeles?
Well, we started talking about it. We had a dialogue about it, because Cleveland at the time had one of the top 10 discos in the United States. It was a place called Tracks, and it was like the most fun. It was on par with Studio 54. For years, it was voted one of the top 10 discos in the United States. So we got people from New York coming to party, Montreal, Chicago. There was kind of this whole circuit. They would stay for the weekend, and then they would leave.
So what did you think? How did you feel when you first realized?
I did one of the healthy things you could do then: I participated in a lot of denial, because there wasn't anything else you could do. And I was like this super athlete. I was running 10 miles a day, five days a week. I'd get really sick, and then the infections would clear up and I'd go back to running.
But I was studying psychology, too. It was always something that was interesting to me. I had started as a psych major. I did a lot of visualization when I was running, stuff like that, that we knew about; and just visualized that I was destroying this disease in me while I was doing this running and stuff. I think that was important.
Who was the first person that you told? How did you first start talking about it?
I called a friend of mine. I was a volunteer at the Free Medical Clinic in Cleveland. We have two big, free medical clinics. The one I volunteered at was the one on the east side of Cleveland, on East 123rd and Euclid. It was set up by the same people who set up the Free Medical Clinic in Haight Ashbury. I worked the crisis intervention hotline and I was totally into the scene. Really cool people to work with, and I made friends with a lot of people in the system.
There was a free medical clinic on the west side of Cleveland. One of my friends, who happened to be a Haitian man, ran the lab in that free clinic. So, when the test first came out, I called him and I said, "Randy, I think I'm HIV positive, but I don't know if I should get tested or not."
He said, "I'm having a really hard time keeping the state from getting at my records. There's nothing we can do: There's no medication; there's no treatment. All they're going to do is tell you you have this disease, you're going to die, and probably really soon, so just go home and get your affairs in order and get ready to die." He was like, "I don't think it's a really healthy idea to get tested."
I was still working in the hospital at the time, and we were seeing a lot of HIV patients. So, fast-forward a year or two, and AZT becomes generally available. And I was in the hospital again. My mother worked in the same hospital as I did. She worked in intensive care.
I was being admitted, and I went up and talked to her and said, "I'm going to my room."
She came up to my room after I had gotten settled and she said, "There's medication now. You should go get tested when we get you out of here. It's time."
She knew I was gay. I was out about being gay since I was like in seventh grade. So it was just a conversation: "You're gay. There's a good chance you have been exposed to this. And now there's medicine, so let's go take care of this."
I actually always have been a bit of a rebel, and never conformed to what people believed was possible for a gay man. In the early '80s, I took in a throwaway kid from my neighborhood and started raising him. He was 12 when I took him in, and I think I was 24. When I went to get the test, I did not tell him, because I didn't want him to worry until this time. But I had another friend who worked in the system and he said, "You need to tell some people that you're doing this so that, if your test comes back positive, you have some people in your life that are prepared for it."
So my son has been with the same woman since he was 14. He's 41 now. She went with me to get my test results.
After I tested positive, the first thing we did was went home and told him. And that, for me, was the hardest thing about AIDS. Because I was the only father he had ever known. He hadn't expected to have a father in his life, and he just totally flipped out. He was like, "I didn't have a dad. Then I found you. And now you're going to die. That's just not fair."
And I'm like, "Listen. I promise you I am not going to die."
So it really was a different experience, actually testing positive and getting the results, as opposed to the couple of years when you were pretty sure, but not a 100 percent sure. It sounds as if that really was some sort of a turning point to actually have the results in hand, as opposed to just sort of speculating.
Yeah. And the weird thing is, it was much less scary actually knowing. Because there was so much that we didn't know in those days about what was going to happen that actually that fear of not knowing was much more huge than actually knowing. It was like, OK, I know now I have to do something about this. Let's get busy. Let's do it.
Did you go on AZT right away, or did you wait?
I went on it right away. My first T-cell count came back at 230. This was like in 1987, '88.
At that time, that really meant like 18 to 24 months, probably, with that kind of T-cell count and having some of the onuses I had. I immediately went on AZT. My T cells went from 230 to about, four or five years later, 1,100 and stayed there for years and years.
Wow. And this was just on AZT monotherapy?
Just on AZT. I am a freak of nature -- I still have not developed resistance to AZT. Nobody can figure it out. Nobody knows why. I did monotherapy AZT for like five or six years. I still take AZT. Nobody in the world takes AZT anymore. I still take AZT. I'm really superstitious about it. It works. If it's not broke, don't fix it.
No kidding. What do you take it with? I'm assuming that you're not taking monotherapy now.
What has been your experience -- especially having been on AZT for so long -- with side effects?
I've run the gamut. I was on Viread [tenofovir] and developed something called Fanconi syndrome, which is a very rare side effect from Viread. I go to the Cleveland Clinic, and have the most wonderful doctor in the world. She is absolutely brilliant. She's been doing AIDS work forever. I absolutely love her.
I noticed the problem first. No lab test.
What were the symptoms?
When I would urinate, it was like somebody put dishwashing soap in the urinal. I was leeching all the protein out of my kidneys through this tube -- I can't remember what it's called -- but that's part of the Fanconi syndrome. And I was like, "Something is really wrong." She sent me to a kidney specialist. The kidney specialist couldn't figure it out.
My ex-boyfriend had since gotten in this 20-year relationship. He's very into research and stuff. It was right on the package insert. We started getting online, and researching Fanconi syndrome; went back to my doc and said, "This is what we think is going on."
And she felt so horrible. She was like, "Oh, my God, I can't believe I missed this."
I was like, "We are supposed to be partners in this. It is my responsibility to educate myself. We're supposed to be partners. You are not supposed to catch everything. That's not your job. It's our job to work together. I have some skin in the game, too, here, OK? So it's all good. We figured it out, and we didn't damage my kidneys irreparably, so we're good."
Did you go off the Viread after that?
Immediately. Yeah, I was one of those people when Norvir first came out, I was so sick, so I started doing the, what was it? Twelve hundred milligrams? Did it for five days. Had a massive seizure while I was driving. Got back to our shop -- which we'll talk about -- and my partner was like, "Oh, my God. We've got to take you to the emergency room!"
I'm like, "They don't know what this shit is. It's just been on the market for, like a week. The drugstore won't have a printout. They're going to charge me $800 and tell me to stop taking this shit. I can figure that out for myself. Thanks."
Now we take 100 milligrams a day of Norvir, not 1,200 milligrams. It's toxic at 1,200 milligrams.
Did your relationship with friends, family and other folks in the community change after you were diagnosed?
Almost all of my friends died. That changed everything. My family is complicated. I have divested myself of a lot of my biological family, because they were toxic. Some of my biological family is not and I'm amazingly close to them. My youngest brother and I were very, very close. He died about six years ago from pancreatic cancer. His children and I are very close. Back in the day, when six of my friends would die in four weeks, I would just go to his house and hold his babies, because it was the only thing that made sense. Somehow, I thought it made the world OK. His oldest daughter is now the housing case manager at the Columbus AIDS Taskforce. She makes me unbelievably proud and she's like, "Uncle Gil, I didn't do this just because of you. I did it, because it's important." Makes me amazingly proud.
My children are ... I have two boys now. They are amazing. But, particularly with my oldest boy.
This is the one who was 12 when you were diagnosed?
Yeah. My youngest boy is 33 now. He came into my life much later. But my oldest boy knew so many of my friends who died. So every one of them that died was somebody who he loved -- or many of them were people who he loved, and grew up with. That was hard. It has made him an amazing man. He is such a kind man, such a gentle man. I'm really proud of him.
His sister and his biological mother died, both in the same year, a couple of years ago. It was very hard to watch him go through it. But he understood death; he had grown up with death. And so, yeah: It's changed everything.
If they cured AIDS today, for us, in my family, it would never be done. I compare this to the Holocaust, because for gay men, this is our Holocaust in this country. I'm a big fan of Larry Kramer. Larry Kramer's my hero. If it wasn't for him, I'd be dead today, probably. But you'll hear younger, gay guys, or guys just in the generation after me, saying, "Oh, well. You know, the gay community in New York moved up to Chelsea."
I was like, "No, they didn't." In 10 years, in a 10-square-block area, 50,000 gay men died. They did not move; they died. It wiped them out. I can't even walk in the Village anymore, like, down Christopher Street. I get panic attacks. I was there in 1978. I know what it looked like in 1978. I know what it looked like in 1984. I know what it looked like in 1992. It's very difficult still to walk there.
How did your second boy come into your life?
Well, that's kind of wild. This works into Nightsweats & T-Cells. I work for an organization called Nightsweats & T-Cells. We run an employment project for people with HIV and AIDS. We design T-shirts. We have our own line of T-shirts, and we do design work and printing for AIDS organizations all over the country.
But how did Nightsweats & T-Cells start?
Nightsweats & T-Cells is a very old AIDS organization. Paul Monette, who wrote Borrowed Time and Becoming a Man: Paul Monette and his best friend, Victor Brown, were on a cruise. Victor designed greeting cards before he became ill with AIDS. They met a social worker from Cleveland. The three of them would say things about AIDS. They would have conversations and they would say, "Well, that should be a T-shirt. Because if that was a T-shirt, and you were wearing that T-shirt in line in the grocery store, the people around you could not ignore that part of AIDS."
Then they were like, "OK, well, if we made these T-shirts, we would have this company called Nightsweats & T-Cells." They made up this mythical company.
A social worker had been with them on the trip, and she came back to Cleveland. She worked in the AIDS field in Cleveland. She was doing an event, and she heard there was a screen printer who was HIV positive. She needed T-shirts for this event. So she went to him and said, "I need these T-shirts for this event." Then she was like, "Oh, and by the way, me and my friends have been saying these things. We should do these shirts." So they started Nightsweats & T-Cells.
At first, she would travel to AIDS conferences, like the one we're at now, and she would wear these shirts at the conference. People would say, "Wow, that's a really cool shirt. Where did you get it?"
And she'd go, "Oh, I have like three dozen in my room." They would sell them off her back, practically, and say, "OK, what should we do with the money?"
"Well, so-and-so needs money. Let's just give him the money."
She got really pissed off one day and she was like, "So-and-so's sitting at home. He's not dying of AIDS; he's dying of boredom. He's not sick seven days a week. Couldn't we bring him in here on the days he's healthy enough to work? Teach him how to do this? And give him a paycheck instead of a handout? And let him keep his dignity?"
This started locally in Cleveland and then in '92 -- well, in '91 we knew the Quilt was going to be in D.C. in '92, and a bunch of us people with AIDS wanted to go. But it was not going to be there for people with AIDS. Because people with AIDS who are living on disability on $800 a month cannot afford to go to Washington, D.C., for four days to participate in this event. So we were like, "OK, how are we going to do this?"
Well, my partner at the time, who was one of the founders of Nightsweats, and I were on the verge of being homeless. We're like, "OK, we'll take our credit cards. We'll buy a bunch of blank T-shirts. We'll print out our designs. Get a street vendor's license."
I borrowed my brother's van. We pulled up to a legal vending space on the street, opened the side doors, put our table up and put our designs on it -- we may have had eight or 10 at the time. We started telling people what we were trying to do to employ people with AIDS.
Two things happened. The first thing that happened was we literally could not take money from people fast enough when they heard what we were telling them. The love was so amazing; it was so palpable. They thought what we had to say on our shirts was so important.
The second thing that happened was that people with HIV and AIDS from all over the country were like, "God, this is so cool. Have you heard of anything like this in my city? Are you going to franchise? Will you start something like this in our city with us?" And, you know, we were all people with AIDS who had limited energy.
We did hear that there was one other organization through one guy who had obvious neurological [issues]. He was trying to tell us that there was somebody else doing something similar to what we were doing in New York. Couldn't get it together to explain it all to us. So we got back from D.C. And, by the way, it was really successful. Ended up on the grounds with the Quilt, which was illegal, but the ACT-UP people dragged us over there. They were like, "You guys really need to be with us." We had an internal discussion, because the park police could seize all of our product, all our money, and I'm like, "We'll wind up being homeless." But it was so important that we were like, "OK, we're going to risk it. We're going over there." And we did.
And now, talk a little bit about how the project has grown into other parts of the country, and other similar projects, as well.
Well, first off, we don't just print our own line of T-shirts. We do work for AIDS organizations all over the country. Broadway Cares/Equity Fights AIDS: Every T-shirt that they've done for every event, I think, for the last 15 years, somebody with AIDS has gotten a paycheck for doing ... which is astounding. They are just the most amazing people. Test Positive Aware Network, here in Chicago: Just hundreds and hundreds of supportive people have been there, buying designs from us, buying T-shirts from us, buying book bags from us, buying hats from us.
But also, we hooked up with the people from New York. The person who started Multitasking Systems in New York, which was the organization that this man was trying to tell us about; it was a temp service staffed by people with HIV and AIDS. They were started by one of Larry Kramer's doctors -- the woman portrayed in The Normal Heart. She realized that her patients who were professionals who could tailor their work hours to their physical abilities -- that they not only lived longer, but they had fewer incidents of opportunistic infections, and that when they did get an opportunistic infection, they rebounded quicker.
What's the first thing people ask when they meet you?
"What do you do?"
And if you're in that situation, it's like, "Well, I'm in recovery. I'm HIV positive." When somebody comes and works for us, they're like, "OK, I'm the shipping clerk at Nightsweats & T-Cells. I'm learning graphic design skills. I'm learning how to be a printer and I am in recovery. And I'm positive." It's like reclaiming your life. This is not rocket science.
Switching gears back to your own experience: I'm glad you brought up accessing meds. I'm curious how you access your meds now, and what your history with that has been. Did you get on ADAP?
I worked in a hospital for almost 20 years, and had good insurance -- but at first, I did not use it when I was diagnosed. My best friend was a doctor and we knew that our institution had made a decision that they did not want to become the AIDS hospital in Cleveland. So he was like, "It's not a good idea to use your insurance until you get really sick, and you're doing that $250,000 hospitalization. Then they won't be able to fire you. If they find out you're HIV positive now, they'll try to fire you. So you need to pay for this out of your pocket." I had just finished school. But I was working in the maintenance department in high school. So I was not a wealthy man -- you know, raising kids. My second job was working in the apartment complex I lived at, painting empty apartments. So I paid for some of my medicine.
I had friends in Toronto who couldn't take AZT anymore, but didn't tell their doctors, because they would smuggle it to friends in the States. I would smuggle it back. Sometimes I've smuggled drugs for other people back from Canada that people couldn't take anymore; they save them up and asked me -- and I was so flattered -- "Would you help smuggle this stuff back?" I'm like, wow. "Yeah, because it could save somebody's life."
In '94, I got very, very sick and cut back my hours at the hospital. I was working more with Nightsweats & T-Cells. I've called people from my hospital bed, trying to round up work for Nightsweats & T-Cells.
I ended up leaving the hospital, because if you wanted to go home at all, you had to go to see the doctor who takes care of the employees. I had since let them know I was HIV positive because, after a while, I figured out I would be broke and dead, so it made no sense. So I started using my insurance and then I came out to my employer.
They were very generous to me when I left. They let me extend my health insurance for 40 months after I left. That is unheard of. That is completely unheard of. I had somebody tell me that it wasn't necessarily them being generous, that I was the spokesperson for ACT-UP, so maybe they were motivated to be generous.
Generosity: What's in a name, right?
Yes. I am basically a volunteer with Nightsweats & T-Cells. But it is my life. It is the thing that drives me to get out of bed in the morning, gives me a reason to keep going. There are times that I am really, really not healthy. I still sometimes work from my bed. And it's OK. It's cool. It's good to get up in the morning and make a difference in the world.
My dog goes to the shop with me and sleeps under my desk. I'm dealing with artwork for the Tony Awards shirts, or something like that. That's awesome, you know? Elton John's autograph's on my desk; and I'm working with it to make it work on a T-shirt. Or one of the logos for one of the Broadway shows, or something. That's amazing.
What else do you do to keep healthy?
Exercise. I have a lot of problems with my back. A lot of long-term survivors with HIV are having really severe back issues. We tend to age much faster than people who do not have the same issues. We have bone density problems. I have had to have a series of five spine procedures in the last five years; pain blocker shots that are now not working. I'm going to see a spine surgeon on the 17th, when I go home from here.
But I worked with a physical therapist at Cleveland Clinic to set up a regimen of physical therapy that keeps me up and walking. It's healthy to be up and walking. You have to be up and walking to get [rid of] the toxins that these medications leave behind in your body. Being mobile is very huge; it's very important to get these toxins out of your body. So that's what I do.
I don't exercise like I used to. I can't run at all. I have other people in the shop who are taking my dog for a walk, because he's a 105-pound Rhodesian Ridgeback. I cannot; I can't even walk him anymore. It just hurts too bad. But I can still love him, and somebody else can take him for walks.
How do you access your HIV meds now?
Right now, I get my meds through Medicare Part D. ADAP helps from the state of Ohio. Like I said, now we have nobody on the waiting list.
I have a theory about all this, too. Because people are pissed off at the government, and they're saying the government is not giving enough money to ADAP. I think the problem is that the pharmaceutical companies are not giving us enough medication for the money we're giving them. I think we give them plenty of money. I think the government should spend more money on people with HIV. I think the government should spend more money on medicine, period, in this country.
We spend more on our military than all the rest of the countries in the world combined: 53 cents out of every tax dollar goes to support the industrial military complex in this country. You've got people pitting disease against disease in this country and saying, "Oh, well, it's AIDS exceptionalism, or entitlements."
Well, guess what? I've worked every day, sometimes 12, 16 hours a day, going to school at night, raising my children, paying my taxes. I am entitled to live with dignity. It is an entitlement. You're right. Entitlement's not a dirty word. I'm entitled to have medicine when I'm sick. I do a lot of good in the world. And even if I didn't, I'm a human being.
Do you have anything to say in closing that you'd like to share with those who are your viewing your video right now, and with our readers?
Just how grateful I am to be alive, how grateful I am for all the people who fought so hard for me to be alive. Most of them are dead. But there have been some protests here at this conference; and it is so nice to see people protesting again. It's so cool. It gives me such hope.
Thank you so much. It was wonderful talking to you today.
This transcript has been lightly edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.