Mark Patton on Fighting the HIV Horror Show With Honesty
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.
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