HIV-Positive People Are Living Longer Than Ever. And There's A Big Problem With That.

While contracting HIV is no longer the death sentence it once was, the virus can still be very detrimental to one's health (and pocketbook). Scott Jordan shares his story of what it's like to be an aging survivor.

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Scott Jordan: Before HIV it was wonderful. It was one big party. I was an employee of Studio 54. I was the busboy and there was a lot of drug-taking and a lot of sex. I lived in an apartment building on the Lower East Side and it was entirely occupied by gay men. Everyone in that apartment building except for me passed from AIDS. They died in a very quick succession. I was diagnosed in 1984. I've never really looked sick. People look at us and they see these muscle healthy looking guys and their attitude is, "Well, you're fine." They don't see what goes on behind the scenes.

Today I take approximately 13 pills everyday. I have to count them, make sure I have the right amount. I'm suffering right now from long-term side effects that are very, very bad. I take pills for high blood pressure, for cholesterol, for the ulcerations, which I'm now taking double doses of. I often joke that if I do live to be 70 or 80 I'll have a wheelbarrow full of medicine that'll double as a walker.

Demetre Daskalakis: One of the biggest challenges for someone who's a longtime survivor of HIV is to maintain that level of adherence to medications and also to deal with the fact that they're aging. There's some concern that HIV in itself may adversely impact the aging process. There was a lot of conversation about frailty and are people with HIV potentially more frail, or are they immunologically older than their age.

Scott Jordan: I've developed a disease called the vascular necrosis because the long-term use of HIV treatment, the blood supply has been cut off to my joints, especially in the bones are actually dying. I've had four operations this year. I had to take my hip implant apart twice. Now that I have these issues of mobility, it affects our day-to-day living. We've had to install an elevator chair so I can get up and down the stairs.

Perry Halkitis: We know that by 2015 half of HIV-positive individuals in this country will be 50 and older. By 2020 that's 70%. For older adults who get infected later, they're still negotiating what it means to be HIV-positive. It's new to them. For those who are long-term survivors, they're negotiating a lifetime of living with this disease.

Scott Jordan: One night I just became horribly despondent and hopeless in a way I'd never been and I swallowed 300 pills. The doctors said that I would either be in a coma for the rest of my life or die, but that I would likely die, and some great miracle I woke up. My depression was clinical not so much situational, but certainly I think it was exacerbated by the circumstances that I found myself in.

Mark Erson: It's hard to sit and be powerless in the face of some of this. I can try to make him as comfortable as possible, not allowing him to just kind of do nothing but instead say, "Hey, let's go to a movie, or let's go out to dinner." We jokingly say it to each other but we mean it sincerely that even going to the supermarket or just hanging out at home and watching a movie, we enjoy each other's company, so while there are disappointments along the way, there's certainly plenty of wonderful times.

Demetre Daskalakis: HIV is now a chronic disease that we can manage so you can take that very same statement and turn it the other way and say, "Oh, HIV is a chronic disease that we can manage. So what's the big deal?" That has potentially impacted people who were coming of age and coming into risk in the way that they think about risk in general.

Perry Halkitis: When we ask men in our studies now, young man what they worry about, they worry about finding a job, finding a new place to live, having money. Yes, they worry about HIV but it's not number one. Maybe it's number eight, nine or ten.

Scott Jordan: Have chicken pie, country ham, homemade butter on the bread. But the best darn thing about Grandma's house was the great big feather bed. What message do I come up with? Together across of these young people that they have to take every precaution necessary because even though they may live a long life it may not be the kind of life they were hoping for. I'm in my thirtieth year of sickness. For the last 23, I had thought about death almost every day, and wondering when is my luck going to run out. I'm trying to not focus on HIV and make it my whole life, and it's very challenging but I'm making headway.

Male: Being out on a big ranch, it is the way of life that we cherish and we don't intend to change.

Scott Jordan: The others trespassing their crossing over and they're illegals.

Male: It's just about making an effort to save lives.

There may be small errors in this transcript.

Original by The Guardian.


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