October 22, 2013
If you look up the list of famous people living with HIV on Wikipedia, very few living actors come up. In fact, for an actor who has made only three films, Mark Patton is the most vocal actor living with HIV discussing his status. Of course, when one of those three movies is the cult classic A Nightmare on Elm Street 2: Freddy's Revenge, you don't have to make many more movies to remain well known. After a short stint with fame in the mid-1980s, Patton became an interior designer and was diagnosed with HIV in the late '90s. Due to tuberculosis, he was unable to take protease inhibitors and had to rely on several older regimens that he saw ravage many of his closest friends.
Patton's road to a second wind of stardom has been long, and he knows how fortunate he is. He uses his celebrity status as a platform to discuss HIV with people who may not always get the messaging: horror fans. He travels all over the world, but calls Puerto Vallarta, Mexico, home -- and enjoys many of the health benefits of living there, including heavily subsidized medications.
Before you read about how much Patton believes "honesty is the best policy," and how the truth really did set him free, check out the trailer for the second Nightmare below.
Can you start by describing how you found out you were HIV positive?
Sure, I mean, it's actually quite a long story, but my partner -- my life partner -- died of HIV-related illness. I had been tested for very many years and had always been negative, so I went to the doctor. I never practiced what I understood to be unsafe sex. I learned a lot after my diagnosis that I didn't know before.
I went for years and years and years and was fine, and then just stopped being tested, because I never had unprotected anal sex. I didn't have any of those issues -- they were not issues for me. But, when I was diagnosed, I thought I had bronchitis. I had Pneumocystis pneumonia, cancer, esophageal thrush, tuberculosis, 3 T cells and a viral load of 3 million. Two days later, I was diagnosed.
I went to a doctor thinking I had bronchitis and thinking I had really fabulous abs, because I was so skinny for the first time. Now, I know I was in denial, of course. I now weigh 165 pounds; at that time, I weighed 135 pounds and I'm 5 feet 10 inches tall. I was very busy with life, and I went to a walk-in doctor. He was very nice, very gentle, and he said, "Can I give you an HIV test?" I said, "Well, you can, but I don't need one. I'm not HIV positive." And, literally, the minute the needle went in my arm, I was just like, "You're such a fool. You're an absolute fool."
I went back and he said, "You are HIV positive. I can do your lab tests here." I said, "That isn't necessary." Because I think that was the first time he had ever actually told a person. So I sort of had to coach him through this. And, by this time, I had already had a lot of experience with HIV. I mean, by that time, all of my friends had died. I was from that generation. And my information was a little backwards, because when you shut down, you just sort of shut down emotionally. So, I thought I knew a lot, but I didn't. Then I had to go home and tell my family. I actually walked to the doctor -- I was in Los Angeles at the time. I had a two block walk and I thought, "You know, when I get home and I say this out loud, it's going to be real, so enjoy these last two blocks." And I did. And then I told them and I was in the hospital two days later.
How old were you at the time, and what year was this?
I was 39 years old and it was 15 years ago.
Who were the first people that you told that you'd tested HIV positive?
Mathew, I have to be really clear with you. I didn't have any option about telling anybody anything. I walked home and told my brother, who was a single parent and living with me at the time with his 2-and-a-half-year-old daughter. I had an appointment to go to an HIV doctor, but my brother was not a native Californian. The doctor had said to take me to USC Medical Center, because I have the best insurance in the world. I have Screen Actors Guild insurance -- the Actors Fund is behind me. But he accidentally took me to County General Hospital, where I was diagnosed with tuberculosis. I was immediately put in isolation. I also had Pneumocystis pneumonia and esophageal thrush and thrush in my lungs. I had a death sentence, basically.
They put me in isolation and induced me into a state of deep relaxation with drugs and whatnot. I stayed in isolation for one month. County was the hospital for the jail, so there was blood on the walls -- it's just horrible. My friends had come in and put in some blankets; it looked very West Hollywood by the time they were done with it.
The first contact that I really remember with people is that, by the time I woke up, there were two cleaning women in the room, and they had masks on, and they were kneeling down and praying for me. I said, "I'm not going to die." And they said, "We know, we know you're not. We're just going to pray for you anyway." Most people wouldn't come in the room, and here were these two ladies charged with cleaning up the mess and they took a few minutes to literally get down on their knees and pray for me. It was pretty intense.
So, by the time I came out of the hospital, everybody knew. Telling people was not something I had the desire to do -- or the energy to do. Because I was diagnosed with tuberculosis, I wasn't allowed to take protease inhibitors, because they're not compatible with that condition. I had to take old-line therapies -- AZT [Retrovir, zidovudine], ddI [Videx, didanosine], d4T [Zerit, stavudine] -- and I knew what the side effects were because all of my friends had used these drugs. I knew that I would have neuropathy. It took me two and a half years to recover from the regimen that I was on.
As soon as I finished my year of tuberculosis therapy -- and I was on a direct observation therapy by the government, because they felt like I was flight risk because I had money and a passport and I wanted to take HIV meds and I didn't want to be treated for tuberculosis -- I went on a new HIV med regimen. In six months, I went down to being undetectable. I never had a detectable viral load again. I had two and a half years of hell from anemia, neuropathy, all those things, but that was due to the ddI and d4T. It took me a while to recover from that, but now I have around 500 T cells and my viral load has been undetectable for 13 years.
Going back to your diagnosis: You said that you didn't think you had HIV, so you didn't think you were at risk for HIV at the time. But, looking back on it now, do you know what put you at risk?
Oh, sure. You know, I was lucky. I was in a support group with the Actors Fund of America. If you're going to get a disease as an actor, make it HIV, because there's so much money in place there, because there are so many people who died and left money for the Actors Fund. They opened their umbrella really, really wide -- you know, if you were in a high school play, you could go there. [Laughs.]
But, I was in a support group with about 10 or 11 core group members. Five of them had never had anal sex. Now, you could say that one or two of them were ashamed and just didn't want to admit this. But when you have six people in a group and they're all saying the same thing, you know the pedagogy is a bit off.
It's one of the things I talk to young people about: I believe that many of my friends may have gotten HIV because of having oral sex. What so many people don't factor in is, if you just had a root canal, if you have an open sore in your mouth, if you have bad dental work, all of these are potential opportunities to become infected. Most young people don't want to talk about it. A lot of people don't want to talk about it at all. But I know my five friends. I know them very well, and I know me very well. I will tell you anything that you want to know about me in regards to my health and my body, because I feel like I'm a real good witness for this. I don't have any reason to lie -- I'm not ashamed of anything. I know how I got it, and that's the way that it happened for me and for my friends. So, I always say to young people to be careful and take care of themselves.
When you hear "I'm HIV negative" from people, well, a lot of people say that and they haven't been tested for three to five years and they've had sex with 10 people, so they don't know really. Be kind to others, be honest, be straightforward, but really protect yourself. The only person that will really protect you is you. You get to make your own decisions, obviously, sexually, but I will tell you that I know a number of men that will testify to the fact that it's not as clean cut as people would want you to believe.
You said that, when you were first diagnosed, it was not an option for you not to disclose. Can you describe, when you did have the option, how you disclosed in a relationship?
I was really, really lucky because I had a group of friends in Los Angeles who were all my age and who were all HIV positive. And all of those guys just happened to be in Alcoholics Anonymous and they all hung out together. One of them was a dear friend of mine from New York. They took me under their wing. They all took care of me; and because of their program, they were all very into honesty. Honesty is the best policy. They all took care of me when I was ill and got me well. I remember the first time we all went out when I could go out in public. We went to The Abbey in West Hollywood for breakfast, which is a big, really nice, gay place and really beautiful. All the A-gays go there. And all at the same time, these guys just put their pills up on the table like, "OK, girls!" I never was ashamed. They made it, and this is just the way it is.
The first thing I would say to people for many years, and I don't do it now, though maybe on some levels, because I talk about this a lot, but when I would meet people, I would say, "Hi, I'm Mark. I have HIV." Because I had an AIDS diagnosis at the time, I would say that very first thing, because if they were going to reject me as a friend, I wanted it right up front. To be honest with you, I never wanted any sort of intimate relationship with someone who was HIV negative. I didn't want that responsibility.
I have a large pool of friends. Everybody knows everybody else, so for me it was very seamless. I was very blessed. I have great self-esteem. I can thank my mom and dad for that. I have an illness. I have a condition. I'm not a bad person, and I never felt that. I'm from that generation where I watched every friend I have die. By the time I was ill, I had seen 50 of my dear friends die, so I knew what my options were. I knew what the road might look like. I just didn't think it would look like what it ended up looking like, which is a normal lifestyle.
Are you in a relationship now?
I am in a relationship now, but that's the one thing I'm not going to talk about. I'm a public person because of my movies and the traveling I do, but my partner is a very private person from a very private family, and I've impinged on him and his family's life enough. I sort of leave them alone. [Laughs.]
OK, then, moving right along. You were living with your brother at the time of your diagnosis. Did you have to tell your parents? Did your parents come visit you at the hospital?
Yeah, my parents were alive. My entire family was alive. My mom died the year after my diagnosis. And then my dad recently died. I didn't actually tell my family. My brother told my family, because they had to come to the hospital to see me. My father, actually, said, "Absolutely not." He wasn't coming because I wasn't dying. When I was a little child, I was a borderline diabetic. The last time I saw my father before I was diagnosed, he took me aside and he said, "Have you had your blood sugar checked lately?" I said, "My blood sugar's fine." He said, "No, there's something wrong with you. I know it in my heart." And he had the same reaction to them telling me I was going to die -- saying, "No, he's not. I'm not going to see him, because he's not going to die." I think he thought, if I looked up and I saw him standing there, that it would be a signal to me that I should go ahead and die, and I just wasn't going any place. I knew in my head I wasn't dying. My entire family's been amazingly supportive, always.
How long had you been out to your parents when you were diagnosed?
Oh, I've been out since I was like 5. I officially came out to my parents when I was 19 and living in New York. I did have to go through that whole saying it out loud: "I am telling you I'm a homosexual." My father was a truck driver, my mother was a licensed practical nurse, and we were from a lower-income family -- it wasn't like my parents were awfully sophisticated people. We did have issues over the years that I would attribute to me being gay. My father would get mad at me for leaving home, and I'd say, "You know, that's what grown-ups do." And, if you're gay, where I came from at that time, you move away and live somewhere else -- San Francisco, etc. Not Kansas City.
So, you're from Kansas City.
Kansas City, Missouri.
You said you were from a lower-income area there. Do you know anything about Kansas City now? Do you know if there's support for people living with HIV in Kansas City now?
Oh, yeah. There's an amazing group of people now. The only problem with Kansas City: My residence is in New York, and those places are really geared towards if you make $50,000 a year, you qualify for assistance with your medications. Because my copays are really high, I live in Mexico, though. My medicine here is free, which shows you the big difference between the U.S. and Mexico. I own a business here, and they're happy that I'm here, and all my medications are free. And 99 percent of the country is insured. The thing is, Missouri and Kansas are both very conservative, and the threshold for money is very low. If you earn more than like $12,000 a year, you don't get any assistance towards any HIV medicines if you're uninsured, and you have to depend on Ryan White money. Well, the Ryan White money is gone three months into the year. You have to depend on yourself for your own meds, and coupons from drug companies. A lot of the people out there have to choose between eating and having medicine, and that's really what it comes down to.
I'm a free spirit, but if I found out I was HIV positive, I would get on a plane and fly to any coast I can get to. I would get out of the Midwest. I would get out of the South. We know, you know, what it's like in some places like Mississippi. If you earn more than $10 a day in Mississippi, you don't get any help. How are you going to pay for the medicine?
You own a business in Mexico? What do you do?
I own an art gallery and a store here in Mexico. And an interior design firm. I was an actor from the time that I was 18 until right after I made A Nightmare on Elm Street 2, so I stopped that in 1985 and then became an interior designer. I have an interior design firm. In my art gallery, everything's handmade. A lot of it is handmade by me. [Laughs.]
A lot of what we're discussing happens in your post-acting years, but can you talk about what it's like for actors who have to come out as gay or actors who are HIV positive?
Actually, my partner -- his name was Timothy Patrick Murphy -- he died of AIDS in 1988. He was very well known at the time. He was on the television show Dallas and he had been on soap operas his entire life. He was a strong working actor. He played the Michael Landon character in Sam's Son, which was directed by Michael Landon and loosely based on his life. When he died, the National Enquirer was at his funeral taking pictures of everybody. It was a horror show.
Now, for me, personally, when I reentered that world -- kind of through a back door a couple of years ago -- it was when they did a documentary on Nightmare on Elm Street called Never Sleep Again. It's very successful. Nightmare on Elm Street, obviously, is a worldwide franchise. And everybody knows Freddy Krueger. I'm the star of the second film, which is called the "gayest horror movie ever made." So, after this documentary, there was this whole brouhaha, because there had been Internet fodder for years, and I said, "Yes, the writer wrote it this way." And when I finished this documentary, they said, "Well, you know, they call you the Greta Garbo of horror." I said, "Oh, really?" And they said, "Yeah, everybody wants your autograph because you've been gone a long time and everybody's DVD is filled with signatures and they don't have yours. Do you want to go on tour?" And that's what I did.
I've been all over the world really. I've been to Germany a number of times -- London, Paris, you name it -- and all over the United States for horror conventions. I sign autographs for $20, $25. I travel with Robert Englund, who played Freddy Krueger. I travel with old movie stars or old rock-n-roll stars, basically, and we talk.
It turned out a lot of people did want my autograph. They started a Facebook page for me, and the next day we had 4,000 people. I thought, "What can I do with this?" I said, "For the first year on this tour, I'm going to talk about homophobia in Hollywood." And I would use this as a platform to talk about that. The second year I talked about bullying. And then I announced my HIV status the third year, because I wanted people to know me as a healthy person first. Because I'm talking to people that may have little to no contact with the gay community. They're all headbangers, except they're all just really sweet, dorky people who just look a little scary. There's this huge horror fan base.
When I announced I was HIV positive, I did it in The Advocate online magazine in partnership with HIV Plus magazine, and I'm on the cover this month; it got picked up by CNN, then CNN International, and it went viral. And I couldn't figure out why. You know, I put Freddy's clawed glove on, I say I'm HIV positive -- and then I went to my Wiki page, which they had changed. They have all those lists of "People from Kansas City," "Actors," etc. And now I was listed on "Notable People Living with HIV." I thought, "I'm going to hit this list and see who my compatriots are" -- you know, all the people that are out there talking in the world. There were 109 people on that list at the time. I thought there would be thousands and thousands. And I'm the only actor who's alive. I thought, "Oh my God, I know why CNN picked it up." I mean, obviously there's Greg Louganis or Magic Johnson who came out as HIV positive. Like, those are the 109 people in the world. It's now becoming "OK to be gay" in Hollywood -- in New York, certainly. But now, HIV is something that those who have public lives don't talk about.
I'm glad I got to be that person. It's fine for me; it's a good fit for me. So that's why I said at the beginning of this interview: I'm glad to answer any questions, because I want people to know that you can avoid this.
You said that you have an undetectable viral load and you've had one for about 13 years and that your T-cell count is 500. Do you see an HIV specialist doctor?
How did you find that doctor?
I live in Puerto Vallarta, which is basically the West Hollywood of Mexico. The boys come from everywhere to get here. We have a really great HIV clinic, as far as care goes. Mexico is so far ahead, in a weird way, of the United States. We'll be across the street from the Church of the Virgin of Guadalupe and there'll be women handing out condoms. There'll be a condom stand that's all brightly colored, and they're handing out condoms to people. We have parades and they're throwing out condoms into the streets. And when you're pregnant here, you're tested for HIV; it's just an automatic test. They catch a lot.
And there really is only one place to go in town, and everybody goes there, and so you know everyone in town who is HIV positive. Mexicanos have a real sense of privacy that is respected by each individual, so a lot of times you'll see people on the street and they'll pretend that they don't know you. That's just their way of keeping themselves private, and that's totally understandable. When you're there in the clinic, everybody's like, "Hey! How are you? Nice to see you!" But when you see them in the street, they might not know you. It took me a while to comprehend this, as a person from the North, but I grew to understand that it is cultural. When you grow up so close to people, your personal privacy becomes incredibly important. I can say anything I want about myself, but I have to respect my friends who I see on the street.
But my doctor is fabulous. He's wonderful. I also have a private doctor I utilize here, because I take an antidepressant, which I think a lot of HIV-positive people need. Because I think one of the first symptoms that I really had -- as I look in hindsight -- is when I was in New York, I had really bad depression, and I'm not a depressive-type person. I was going to a therapist, and they wanted me on an antidepressant, and everyone just wanted me to get over it. And I really think, honestly, that's when I was converting and the depression went along with the conversion. Because I remember having a fever, feeling flu-ish, and then I fell into this depression. A lot of my art at the time were like these little figures of these things trying to break through healthy people, and I think my subconscious was trying to tell me something.
My private doctor, if I'm a day late picking up my medicines -- which cost almost nothing -- will come knock on my door. "Hi, just coming to check on you!" Can you imagine that at home in the U.S.? [Laughs.] I'm very well cared for. If I were to fall into some serious medical situation, I really doubt that I'd return to the United States. I'd probably be treated here in Mexico. Even if I were to, say, re-investigate cancer, I would stay here. I'd feel the level of care was perfectly good for me, as good as I get in the U.S., and this is my home now. But, I'm a proud American -- I love America! I just love Mexico, too.
What HIV regimen are you on?
I don't know the names of them, because they're all in Spanish. I'm on a triple-cocktail regimen. And I use an antidepressant. And I manage neuropathy with pain management meditation. I'm on Combivir [AZT/3TC], Kaletra [lopinavir/ritonavir] and Viread [tenofovir] -- that's in English.
So you use meditation to keep healthy?
Oh God, yes.
Do you exercise or keep a special diet?
I eat whatever I want. I'm lucky. Before, I had a really high metabolism. My problem, generally, is keeping weight on as opposed to getting heavy. I did get heavy once. I have low testosterone and I was on medication and it made me more butch, and when I was taking those injections I got a little heavier; but once I could stop those, that stopped. I like to have a cocktail, a glass of wine, whatever, but I like to keep my system as clear as I possibly can. I like to know that when the day comes that I need something, I want to be able to utilize it.
I lost the ability to walk for nine months, because of neuropathy. I mean, literally my feet would not support me; it was the most excruciating pain. When I had neuropathy, at that time, the protocol was Neurontin [gabapentin], which is an anti-seizure medicine, nine 250-milligram tablets a day. I did that, and I did the meditation, like really serious pain management stuff. And now I use an antidepressant called Lyrica [pregabalin], and one of the side effects is that it happens to address neuropathy, so I lucked out there because it's an easy pill to take. I have numbness, but it's manageable to my normal life.
How do you think having HIV has changed you?
Oh, it informs everything -- it changed my life completely. I have a girlfriend right now who I grew up with who is in hospice for uterine cancer. She's really battled strongly for five years and now the end has come and I know where she's at. I can talk to her. We talk and she knows I understand what she's talking about, because I've been there. I've been in a place where the pain is so excruciating -- I had no option, I learned to "go away" from my pain.
There's going be some of your readers who understand this exactly. You come to a certain place in your life where you learn that you are not your pain, and that you are not your illness. When you get into this place where the pain is terrifying or death is terrifying, there's a place where you can go that rises above that. And I learned to do that. Like the pain of if you cut yourself, I don't even register that on a pain level. A broken arm is like, "Oh, that hurts, but that's my arm." I know people who have died excruciating deaths and who fought and were angry. Everyone dies different ways, whether it's HIV, no matter what you have. I've learned that when my time comes, or when you're in that place of what I call "your own personal agony," I just peacefully accept it. Just like relaxing into or leaning into the situation; nothing's very scary anymore.
Now I understand, because I'm further down the road, because I faced my mortality really young. When HIV hit New York in the 1980s -- and you're too young to know this, but some of the people around you might -- you can't imagine how terrifying it was, but the streets were filled with walking dead people. That's why I don't like zombies. I saw the real zombies. You'd see a man on the road and six months later you'd see this old, decrepit man coming at you and it would be your friend. And he was 25, 26 years old and you'd know that you'd never see him again. This changes a person forever.
My dad had been through two tours in the Korean War and he had seen many of his friends die young. We had this in common. He said to me -- it was hard to explain for him -- "I understand. You can talk to me about this if you want to. I know what it's like to have somebody stand next to you one minute and then they're gone the next. And you're like, 'Why am I here?'" That's a complete change. That's a complete mindset change.
That's why I talk to people like you -- people your age -- and I talk to gay people, straight people. I say, "You're young. You don't know what you're dealing with yet. Because it's wearing a mask now. And thank God it is. But, it's wearing a disguise." Gay guys look healthy, they're HIV positive and all of a sudden they get free steroids. They get a little cosmetic surgery and the hollowness leaves their face. And they see a doctor every two months so they're screened for cancer constantly. I, personally, going back to the Nightmare on Elm Street thing: A Nightmare on Elm Street made me a really big star, and it was really nice to fight someone that kind of did a homophobic backstab on me, because of the gay content of the movie. And I would say to myself, "Why God? Why me? Why is this happening to me? I'm a good actor and a good person. And this is my shot. Why me?" And I'd always feel like show business was there. I had a very successful interior design firm, but I kept saying, "I don't think show business is finished with me yet." Then I moved to Mexico, and I thought, "Well, that's the period on the end of that sentence." And I'm sitting at my gallery, not seeking anything, and the people from Never Sleep Again came and found me. They hired a private detective for years to find me to be in this documentary. Then I became famous again in a certain world. And then that "Why me?" came up again.
I'll access it from God, because God's a really easy thing to say. But I got the answer really loud and clear. It was like, "Look, I made you famous. And then I let you get ill. But I gave you a private place to do it in, so that you could get well." Because I never would've been able to do this in public. "And then, I let you get well and then I gave you a comeback. I made you famous again. And I gave you a platform to stand on and talk about this, because you can be a witness, because you're one of the few 54-year-old gay men alive."
I know a lot of 40-year-olds and a lot of 65-year-olds, but not a lot of 51, 52, 53, 54-year-olds. Because we were '80s club kids, and they're all gone. I get to be a witness; I get to sort of testify and say, "This is what it is. This is how it happens." Then I put on my glove, I scream for them for a second, and I talk about Freddy Krueger and everybody listens to me. I just say, "Go get tested. Even if you don't think you need it, just go get tested." And I have people who come to me and say, "I got tested, just because you told me to, because I love Jessie Walsh [Patton's character in A Nightmare on Elm Street 2]."
And that's what my life is like. I'm writing a book and we're doing a documentary. The other actors at conventions freak out because the way I'm talking to you, I talk to people at conventions. We talk about A Nightmare on Elm Street; they say, "What about the gay issue?"; we talk about that. And the ones who follow me have read The Advocate, and they'll ask me about it from the audience or say, "We're so proud of you for standing up and saying you're HIV positive" -- then everyone in the crowd knows that didn't know before.
People line up, and I scream for charity. I scream for The Trevor Project [the national LGBTQ youth suicide prevention hotline]. Because people always say I scream like a girl in the movie, I have a shirt that says, "What's so wrong with screaming like a girl? It made me rich and famous." And we talk about things like, "Why is it such a big insult to be called a girl? Is that the best you can come up with?" My dad said to me a long time ago, when he showed me how to protect myself, "If they call you a girl, fight like a girl, because girls fight with no rules. They'll bite you, they'll kick you, because they just want to win." So, that's what I do. I take the fight to them and I love it.
I scream and then I ask them to throw money in a box and there's a line up to my table around the block and people are like, "I don't want your autograph. I just want to give money to The Trevor Project and I want to shake your hand." I shake their hand, and I always have the same line -- but, I mean it -- I say, "If you ever hear anybody talk about anybody who's HIV positive or gay, you can't say anymore that you don't know anyone, because you do. You know me." And then the stories come rolling out. "My brother died of AIDS, and my family never talked about it." "My best friend from high school died of AIDS." And it becomes this line of people and they're crying and beaming and smiling and getting autographs and putting the glove on and crying some more and I sign people up for The Trevor Project and I sign them up for AIDS Healthcare Foundation and the other actors are looking at me like, "What the fuck is going on over at that table?" And the energy is so spiritual and so cool and so perfect, you know?
I can wrap this up for you by saying that my friends, the AA friends that had adopted me, said, "Honesty is the best policy," and "The truth will set you free." And I let the truth set me free. And I'm flying. I'm booked all over the world to speak. And four years ago, I was sitting in my art gallery in Mexico on a dirty little dusty road, selling purses, saying, "I know show business isn't done with me." And I'm healthy, thank God.
This transcript has been lightly edited for clarity.
Mathew Rodriguez is the editorial project manager for TheBody.com and TheBodyPRO.com.
Follow Mathew on Twitter: @mathewrodriguez.