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Kai Chandler Lois Crenshaw Gary Paul Wright Fortunata Kasege Keith Green Lois Bates Greg Braxton Vanessa Austin Bernard Jackson

A Longtime HIV Survivor on Public Health, Private Health and Spiritual Wellness

Part Two of a Two-Part Interview With Jeffery A. Haskins -- Part of the Series This Positive Life

January 21, 2014

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This Positive Life

Jeffery A. Haskins was kept alive by some pretty toxic early HIV med regimens; now he's willing to try any of the several one-pill-a-day regimens available to help keep his viral load undetectable. As a long-term survivor, however, he's interested not only in his own health, but the ways people living with HIV can come together and demand greater health for their community.

Whether it's competition for vital prevention dollars or lifting the federal ban on syringe exchange, he knows the challenges that are real in public health today. In this interview, Jeffery touches upon all of these topics, as well as how his spiritual health has helped see him through it all. And, once his work in HIV is done, expect to see a film about his experiences and the struggles of those like him.

Watch or read part one of this conversation, in which Jeffery talks about the history of black gay HIV activism.

This interview was conducted in October 2012.


Inspiring stories of people living with HIV.


How has your health been?

I'm challenged by the medicine. I can't take Atripla [efavirenz/tenofovir/FTC]. You know, some people of color have a reaction to Sustiva [efavirenz, Stocrin]. When I was on that Sustiva, I didn't know if I was awake, asleep; I didn't know what day it was. It was like, am I supposed to lie down? I lie down. Am I asleep? Am I up? I don't know. It was crazy.

I said, "Take me off that." My doctor said, "No. It takes three -" I said, "No, no, no. I can't go another three days with this reaction. Take me off."

And when we did the genotype test, we saw that I should not have been on it -- because I would have a natural reaction from the genotype. Like, why didn't you do that before you prescribed it? Duh. But anyway, the points and arrows of this thing.

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Some new one-a-day pills are being reviewed by the FDA [U.S. Food and Drug Administration]. And we need to have those. We need to act up and get them speeded up. Because Complera [rilpivirine/tenofovir/FTC], yes, it is the new one-a-day. But they say you're not supposed to take Complera unless you're newly diagnosed. So, because you've been taking all this other medicine, we know y'all haven't been taking it right; y'all ain't been even 90 percent adherent -- that you're gonna have these different reactions and Complera might not work for you.

I mean, that's the science thought. But I say, try it and see. They tried AZT [Retrovir, zidovudine] on us. And it kept me alive. I'm still here. So give me the Complera, and let's see how I react. It just might be the miracle.

But my doctor's like, "No, just hold on. Keep taking your medicine. The new pill will be out next month." What was that, September? I haven't heard if it's out yet. It's October, right?

The new one-a-day pill Stribild [elvitegravir/cobicistat/FTC/tenofovir] is available, but there are protests over it being so expensive.

Is that from Gilead?

It's also from Gilead, yeah.

Write them down for me, because I need to stay on top of that. And the reason I say that is because, in our advocacy, the same president that's over the head of the FDA was over the head of the New York Department of Health. I'm not going to mention the name. But we had to advocate to get our money from her, which would have kept our organizations open. I had to go in the paper -- I may be the black sheep, but my agency was the first to get the grant, the cap. It's over.

So she's over this now. You know, she's a bureaucrat. And so, she wants every "I" dotted and every "T" crossed. But, girl, take a risk, because people's lives are on the line -- just like there, with that money; you didn't release it when you were supposed to. You know, it was federal; it was CDC money. We had to get them on it.

It's always been this thing with HIV funding in New York and, I must say, some kind of pitting us together, gay men and heterosexual women, that we get the funding, or they do. There's a cycle: When MSMs [men who have sex with men] are the new flavor of the month, we're going to give it all to them. And we don't give it to women. And when the women become the flavor of the month, we stop giving to MSMs. And the MSMs are like, "What happened? How did we not still continue to get money?"

So we have to have those discussions about how we have to work together in partnership so that the money is distributed evenly and equally.

I mean, what are the IV users going to do now that there's a two-year ban on the needle exchange program? Because the needle exchange is the only prevention that is a hundred percent effective for IV drug users. We proved that. And now Congress wants them to be indispensable -- when that worked. You want your bang for the buck? Give the money to them! Give it to needle exchange. You want your bang for the buck, give the money to research. You want your bang for the buck, give the money to prevention education. You want your bang for the buck, give it to treatment, testing and referrals. Come on! It is not rocket science.

So, here we go. We got to fight. We got to fight until we end the HIV epidemic.

Do you think you'll ever stop doing this work?

Yes, I will retire from it. Oh, I'm retiring in nine years. I'm retiring from the pastorate, and I'm retiring from HIV/AIDS. And I'm going back to my arts. I'm going to do films. Because nobody's telling our stories. I'm going to relocate from the East Coast and move to Los Angeles. Get in the film industry. I already did theater in the summer. I already sang in the choirs. I did music. Ain't nothing left to do but film, television and radio. Get the message out around using the arts as social change.

"I want to be ... a centenarian living with HIV, that is gay, that made it past, and will be, 100-plus. And the Maker can take me any day. He can take me one day after I reach 100, if He would give me that much time."

I will be able to retire. Social Security will send that little check every month, and I have my pension. And it won't matter what I do, or what I get paid. It just matters that I have 24 hours every day -- well, 16 hours, because I've got to sleep for eight, or six -- you know, however many -- or four ... so maybe 20 hours a day to get my projects done. You know what I mean? And, just to live.

In my time, I think my work speaks for me. I think I can live my final days knowing that I did good work. And that's important to me. I can be an example for the next generation behind me, and the generations behind me. Because there will be several generations behind me. Because I've been taking care of myself. I'm doing my health. I'm doing my walking.

I'm asking the Lord for 100-plus. I want to be a centenarian. I want to be one -- a centenarian living with HIV, that is gay, that made it past, and will be, 100-plus. And the Maker can take me any day [after that]. He can take me one day after I reach 100, if He would give me that much time. But that's my prayer. I put my prayer request in. I put my prayer request in that my parents live to be 100. And they're 83 and 84. So I'm still counting. I'm still knocking just right. I'm still keeping everything crossed.

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This article was provided by TheBody.com. It is a part of the publication This Positive Life.


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