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Who's Looking Into PrEP for Women?

A Conversation About the Ins and Outs of HIV Prevention Drugs for Women, With Longtime HIV Nurse Practitioner and Research Clinician Valery Hughes

June 21, 2013

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What's your background and history of working in the HIV community? How did you come to be working on this study, in particular, and with PrEP?

I'm a nurse-practitioner, and have been since sometime in the late '90s. But I've been a nurse forever -- since 1976. And when HIV came along, we didn't even call it HIV. It had some ridiculous acronym -- GRID was one of the ones. There was all sorts of stuff going on.

Basically in 1980 was, I guess, the first case that I am quite sure was HIV related, even though it wasn't recognized at the time. But in retrospect, I see that. And when the full-blown epidemic hit New York, I was working in a New York hospital (not where I'm working now, but in a major New York hospital) and I saw the things that people saw back then: People would come in, be horribly, horribly sick, and die alone, because nobody would go in the room. They were all afraid it was contagious, airborne. And so you couldn't get anybody to bring in a tray to the person so they could eat something, much less go in and visit. And you had people who really didn't even want to work with people with HIV because they thought it was that contagious.

The other thing was that in the very early years, medicine really didn't have a huge amount to offer. HIV was what I called a "nurse's disease." The nurses who were willing to could ameliorate what was transpiring, in terms of offering comfort and pain management and symptom management, and all the things that nurses do. So in the first few years, before there were any medications, there were nurses who were in the forefront there. And I was one of them. It was my community, and so therefore I felt very much beholden to them, and very much that I needed to take care of them. And so that's where I got my interest in HIV.

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Then, as the years progressed and I became involved even more, I later went on and became a nurse-practitioner. The reason I did that was so I could provide primary care to people with HIV. That was my overwhelming concern: to deal with the illness and try to do the best I could for as many people as I could.

I worked at Lenox Hill Hospital for many years in their primary care unit. And I've been at Cornell since 1999, and worked with Drs. Trip Gulick, and Marshall Glesby, and Tim Wilkin on all of the studies that we've been doing.

In 1999, we were giving ... how many pills was it? Ten pills, twice a day? Sometimes four pills, three times a day. I mean, some of the regimens that we came up with, including my all-time favorite, Crixivan (indinavir), which was every eight hours, two hours before eating and one hour after eating: It was just nuts. We actually went from that to having three regimens that are one pill, once a day, in the last 14 years. So research has definitely been a great place to be for the last 14 years.

I think that in many ways therapeutics has come a long way. But it is really time to get to prevention, and it's time to get to the cure. We need to change our focus. So when the chance to work on this study came along, I jumped at it, because I thought, oh, gosh; this is great.

So they originally rolled out the male cohort. And they just very recently opened the cohort for women. So I'm really excited about that.

Judging by your extensive experience working in this epidemic, what do you believe will be the effect, or the ongoing role, of PrEP in the epidemic as a whole? Do you think that it has potential to make a real dent in the number of new HIV infections? What would it take to get there? Or will it stay a kind of niche item for people who happen to have access to knowledge about it?

"I'm hoping, in my sort of non-statistical way, that PrEP can decrease the overall number of people with HIV over time. ... My hope is that I'll turn around in a few years and I'll say, 'Oh, my goodness. What happened?' ... I'm thinking that that's probably going to be my response -- that I'm going to be a little bit surprised because I didn't see it. I was right in there with the trees; I didn't notice the whole forest was actually coming down."

I don't know. I have two thoughts. I'm not a statistician, so it's really hard for me. It's a real loaded question for me. I'm hoping, in my sort of non-statistical way, that PrEP can decrease the overall number of people with HIV over time. I mean, if, every year in the United States about 50,000 people are getting infected, what if that got cut to 10,000 people? What would that do to the progress of the disease over time? I can't tell you the numbers, but I know that that's the goal.

But when I think about it, I can't think in those large terms. I'm really kind of a bird-by-bird person: You've got to count one thing at a time; one infection, and one person, at a time. That's how you have to be in research. It's kind of odd. People think that clinical researchers are looking at big-picture stuff. But really, we're very detail oriented. And I'm always one-person-at-a-time.

So my hope is that I'll turn around in a few years and I'll say, "Oh, my goodness. What happened?" It's like the same amount of surprise I had when I turned around after 14 years of working here, then we went from eight pills, twice a day, to one pill, once a day. I said, "Well, I guess we did do a good job!" I'm thinking that that's probably going to be my response -- that I'm going to be a little bit surprised because I didn't see it. I was right in there with the trees; I didn't notice the whole forest was actually coming down. That would be a great thing.

On a similar vein, judging by what you mentioned about your history in the community, you were around and working in HIV at the time before and after effective treatment was introduced, and people started to realize: "It's been a while since I've been to a funeral," or, "It's been a while since I've lost a patient" -- as opposed to hundreds, on a regular basis, due to AIDS complications.

It's been very interesting. And you're right: that was a huge time. That's why I mentioned the Crixivan because, as much as we hate that drug, it saved so many people ... to keep them going until the next better thing came along. It was definitely what I would call a bridge drug. But I was there when 3TC (Epivir, lamivudine) came out ... I was there when all the drugs came out. I have been able to see the effect of all this work -- both on a community level, working in primary care on a community level, and being a gay person; and on a professional level, working in research. So it's been a huge, huge, big change.

I think PrEP may be the next sea change that we have. I'm hoping it will be. Ask me in a few years. I'll look back and say, "Oh, darn. That was a good idea, wasn't it?"

But I also think it's only one part of trying to get rid of HIV. Because I think the other part of it, of course, is trying to find the cure for people who are already infected. And that stuff is being worked on. I'm not working on it, but other people are. And it's one of the things that has to go forward, and that I support.

PrEP is just one tool, if you will. People love to talk about that toolkit. It's one tool in the toolkit. It's just part of what I'm hoping is going to develop into comprehensive sexual health. And I can't wait until people get the memo.

Everybody has sex. Nobody wants to talk about it. Everybody does it. And we just need to figure out how to stay healthy.

This transcript has been edited for clarity.

Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.


Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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