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
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.
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.
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 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.
What are you doing health-wise?
Health-wise, self-care is the hardest part. Because AIDS: working in this field, or working in any service-oriented field, we take care of everybody else when we don't take care of ourselves. I am now; there have been some issues to force me to take care of myself. And so I have to pace myself. My mentor bishop always says, "Pace yourself."
I suffer from anxiety, so I'm hyper. So sitting still and all of that, my mind races. And I'm an artist, too. So my imagination and my mind race a thousand miles a minute. They're always creating new projects in my head, and I'll just be going, "I ain't writing that down. We can't do all that!"
But I have to learn how to work with people. So the project might come from me, I can be the conceiver, but I always have to be the implementer. I need to work with the team. Because everybody brings their skill, and they may have a better skill than me. I don't have to do it all. That's the problem in America: We think we have to do it all. You have to be the individual, and you gotta be the strongest, and you gotta know it, and you gotta get it all done. And you stress yourself out, and burn out.
No. You need help, and you need collaboration. Again, you need a collaborative working of folks to get the job done. And you need to divide that pie into 12 pieces; you need 12 -- Christ had 12 -- and you give each one an assignment: "Peter, I'm going to build Church on you. John, you gonna be the beloved one. You gonna show them how to just be loving. You're best at that. Thomas, you doubt; so I'm going to prove you wrong. So you go out there and tell people, 'Don't be doubting.' Get me evidence." You know, and He had each one. "Matthew and Mark and Luke, and the others -- and John, too -- you all gonna be writing the stories." You know what I mean? "Peter, you gonna write some, too. But you ain't gonna write that much, because you gonna be doing administration of the organization. So you ain't gonna have all of that time, writing; but you gonna write the policy. It's gonna be short, but it's going to be succinct. So your little two books in there is policy." You know?
And then, "Matthew, Mark and Luke: You all are gonna record the history, the history of when I was here. That's y'all's story. And then, John, I'm going to give you a vision of what it's gonna look like. So you gonna get that in Revelations, so the people will know what's coming."
And so, we also have the ones in the future who can see that we need this, for when we get down that line. Those are strategic planners.
"So, John, you're the beloved one." You gotta have a beloved one that can get along with everybody, that can pull it together. "You're the organizer. So, for the future, it's going to keep us going, keep our agency, and keep our lives. And you're going to keep yourself healthy. We gonna all be healthy tomorrow. But right now, right here, in the present time we gonna build this thing off this rock. And that's Peter's job to do." You know?
And then Paul's job was to come along after they all, and Christ, were gone and just keep taking out the messages. Send them out; send them out. They're the word people, to take it in, to get the message to the street. They're working and telling everybody. Those are the outreach workers.
So I see where spirituality, Church, institutions, whether it's the ASO or CBO or FBO, or if it's a policy and advocacy organization, or if it's fund development, or fundraisers, or consultants, or everything -- we need everybody at the table to get this job done.
And I believe in my lifetime -- and this is the first time I've ever said it with such passion, that I hear myself saying it: I really believe that HIV/AIDS will be ended in my lifetime, just as well as I believed that there would be a black president elected in 2008; that I believe he will be reelected in 2012 [knocks wood]. That's what I believe.
I believe we have the power to make change as we did from that last election. He's made great changes. And I believe we have the power. We have a National HIV/AIDS Strategy. We have an Affordable Care Act. And we have a jobs bill that they're stalling. If he can get back in there and get that jobs bill passed, just like he did with, whatever you want to call it, Obamacare, well, then people will be working. But the people that are unemployed need to vote, and the people that are employed need to vote. And the people that are working in AIDS need to vote, so that we can get the Ryan White bill reauthorized. Because we need that. Because that's our funding.
And we need CDC to be more community based, and talking to us. They've been doing all these things; they need to continue that work. And if he's still there for another four years, research could be more advanced in this next four years. We've come so far in the first four.
Like you said, the new two pills are out. There are three one-a-days already.
Atripla came out before he got to be president. But in his presidency, we had three. Under the other president, we had one forever. So that means the research is working. So the cure can come faster. We need four more years.
I just came back from the Democratic National Convention so I'm hyped. I need four more years for Obama. And if you're watching this, vote. Register to vote.
And we upheld our law. You know that voter's law they tried to do in Pennsylvania? We went up to Harrisburg, and today, we just got the ruling from the judge: "I'm not even going to make a decision till after the election." So there's no suppressed voting in the state of Pennsylvania -- which is a swing state. He won it four years ago. He'll win it again. He only needs Pennsylvania, Florida and Ohio, and it's a done deal.
Three states will make the difference. And in Pennsylvania, we will be doing all we need to do. We already stopped the voter ID law; and we will be doing voter registration, canvassing, campaigning. I work for the office in West Philly, in my neighborhood, and we will be out there. Because we only got 30-something days till the election.
Nov. 6: This is Oct. 2, 2012.
We got 32 days ... 32 days. So we gotta do all we gotta do. Because if he don't, we won't have the funding to continue our struggle to overcome the barriers, the stigma, to overcome the ignorance. We've got to do it. People's lives depend on it. We've come too far to have a setback. And for me, a setback is just a setup for a comeback.
On that note, I'll bring this interview to a close.
I got too much air now! It's time we have a church up in here. He said, "Where two or three are gathered ..." When they say, "Well, they might not come," I say, "He says, 'Where there are two or three,' right? Listen. I'm one. So I only need one to walk through the door. That's two. Two or three: He will be present. He's really saying, 'If you get there and get one more person, I'm gonna come and be three; and we gonna have Church.'"
You don't need but a little bit, a few people, to get a lot done. When you have a lot of them, then it's all the drama, you know. People bring drama. So you need minimum drama.
This transcript has been edited for clarity.
Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.
Watch or read part one of this conversation, in which Jeffery talks about the history of black gay HIV activism.