For Wayne Starks, 51, a former New York City bus driver and the father of two, finding the strength to stay sober has been central to his fight to stay healthy while living with both HIV and hepatitis C virus (HCV). His life has taken some unexpected turns along the way, but as he explains here, Starks has managed to steer himself on the road to wellness.
You advocate for housing security for homeless New Yorkers, especially for people with HIV and/or hepatitis C. Can you explain why?
When I was homeless, I didn’t care about my health. But once I got into permanent housing, I started caring about myself and wanted to do better. I told myself: Alright Wayne, you’ve got to check out your health now. You’ve got to make your doctor’s appointments and take your medicine on time. You’ve got to get some rest, and you can’t hang out in the streets all night. These are the types of things I realized.
So when you were down and out, housing was what allowed you to take that first step of adhering to antiretroviral treatment for HIV. But before you lived on the streets you were working as a bus driver for the New York City Transit Authority.
You know that American dream that they give you—a wife and family, a house with a white picket fence? That’s how I thought my life was going to be. But after being married for seven years I realized that I wasn’t happy in it. I wasn’t in love with my wife, because I like men. But what was I going to do? I had a 7-year-old kid. I had this wife I wasn’t in love with. Even though my wife and I were already getting separated, I left the house we lived in together soon after I found out that I was HIV positive, in 1986.
The life you had built for yourself completely unraveled. What happened next?
I was using back then, and I didn’t care. It was a death sentence when I found out that I was HIV positive, and I thought I was going to die. I just started to speed up the process. But I wouldn’t have survived if I had kept using drugs and alcohol.
Did you know anything about hepatitis C at this point?
Back then, I had friends who had HIV and also [viral] hepatitis, and they told me, “Wayne, more than likely, you might have hepatitis, because you used drugs.” But [my doctors] never found it. All the tests they did never found hepatitis C. [Not until 2000].
Eventually you started getting treatment for HIV, and you got sober. Now you’re an advocate for drug-free housing, especially for former drug users. Why?
After I got sober and was on treatment for HIV, I was in what they call scatter-site housing. But I was placed in a drug-infested housing complex, and it was very hard [to live there]. I used to joke with my friends that I had a doorman, because the drug dealer knew me, so he would open up the door [and let me walk in]. I managed to stay there two years without even indulging or anything like that. Finally, after breaking my leg and the tragedy of my mother’s death, I just picked up. It was right there, right there at my front door. Then it took me years to get completely sober again. That’s why I advocate for drug-free housing. I realize any place you move to in New York City they are going to have drugs, but it’s not as flamboyant as some of the apartments that [the HIV/AIDS Services Administration] HASA puts you in.
You were diagnosed with HCV in 2000. Have you been on treatment for hepatitis C?
No. I’ve done my own treatment: I try to eat right and live right. I watch my diet and eat things that are good for my liver, because they say your liver can regenerate itself. But hep C does so much damage that sometimes it can’t regenerate itself back. So I don’t eat a lot of fatty foods. I try to eat a lot of vegetables and fruits. I try to look up what are the best types of foods to help your liver. Green vegetables are good. So I’m constantly looking to see what I can do to improve my health.
Why did you decided not to start treatment when you were diagnosed?
My doctor wanted to spare me the medication back then, because [treatment] was a long process. He said, “I really don’t want to put you through that right now if you don’t have to go through it, because one of the side effects is depression.” It’s very strong medication, and we thought it was best that I didn’t do it right then. But this year I go to him and find out, OK, do I need to take a new medication? And my doctor will tell me if my [liver enzyme] elevation is high or not.
Did your doctor say anything about the new medications for hepatitis C?
Victrelis and Incivek were both approved in the past year. He said that they were coming out with a couple new antivirals for hep C. It gives me hope, because if you’re [successfully] treated it can go away, unlike HIV. And I hope that they come out with even better medication by the time I do have to go onto [hepatitis C treatment]. Then the medication will wipe it out—[bolstered by the fact that I’ve been] living the right way for these many years.
|VOCAL-NY advocate Starks.
Photo: Karl Simone
You’ve now been sober for around 11 years. You also work for VOCAL-NY as an advocate for people who are going through hard times, struggling either with homelessness, addiction or with a recent HIV or hepatitis diagnosis. Can you talk about your advocacy work?
It’s no longer about me. It’s about whom I can help now. So I have to be a power of example for other people. I can’t tell you to stop drinking if I’m drinking. So I’m just trying to turn my life around and live the right way. All I do is I plant the seed to show people life can get better. If you’re diagnosed with HIV, if you’re diagnosed with hep C, there’s treatment out there for you. And there’s a way to start living. It’s not being condemned; it’s showing you a better way of life. I think my battle is also to get more education into the neighborhood and to try to get politicians to reverse spending cuts [to HIV housing and services]. I’m trying to find out the most recent medication that we can take, too. There’s a lot of work out there.
Do you have any advice for someone who is newly diagnosed with HIV and hepatitis C?
The only thing I can say [is that] if you’re getting high or drunk—stop. Because that will deteriorate your health even more.
Also, get a doctor that you can see on a regular basis and that can refer you to a liver specialist. That’s what I would tell others: Get a good doctor and stay close to him or her.