May #123 : Medicine Men - by Sally Chew

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Table of Contents
 
One Tough Pirate



Seeing the Future

Mentors-May 2006

Medicine Men




Custom Care

Early Birds

Simply Irresistible

The Topic of Cancer

Sow Your Oats

Trainer’s Bench-May 2006

Hustle and Flow

Animal Attraction

Purrrfect Health

Women on Top

PEP Rally

POZ Personals Catch of the Month-May 2006

First Aid for Your Medicaid

Shall We Dance?




A Will & Grace-full Exit?

Ratings for a Serial Virus

Squeaky Clean?

Prescription For Change

Bono’s Red Alert

One Hot ASO

Banned Aid

It’s Not You; It’s Me

Near Dead Again




Editor's Letter-May 2006

Mailbox-May 2006



Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV



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May 2006


Medicine Men

by Sally Chew

Six years after Peter Staley and Tim Horn brought HIV treatment into the digital domain with AIDSmeds.com, the website is now one of the most respected resources for information about HIV meds. It’s also known as the place where the community gathers online to discuss the latest news, questions and controversies surrounding anti-retroviral therapies. Earlier this year, AIDSmeds.com became part of POZ.com. Sally Chew chats with the dynamic duo about their 40 years of combined experience with the chemistry and activism behind HIV treatment

Peter, is it true that you were working as a bond trader on Wall Street when you got HIV?
Peter: Yes, I came to New York in ’83 because I was hired by JP Morgan. It was the Reagan years, so it was a wild ride. I probably became infected my very first summer, but I didn’t find out until the fall of ’85. It was a very scary time to find out I was positive. I kept quiet at work because people got fired for having HIV in those days.

How did you find the AIDS activists?
It took me a year to meet anyone else who was positive. I finally found them in a support group. Then I realized there was political stuff going on. At first, I didn’t know what I could do to help. But I was making a fortune by that time, so I started cutting checks to the People With AIDS Coalition and the Lavender Hill Mob, which had started zapping Reagan officials for not
doing anything about AIDS.

On my way to work in March of ’87, I got a flyer from a new group that was doing its very first demonstration—right on Wall Street—and it was ACT UP. My mentor, the head trader on the bond desk, muttered something like, “I think they all deserve to die because they took it up the butt.” I just had to sit there and stew. But I went home that night, turned on Dan Rather and heard that the FDA was now saying they were going to speed up drug approvals. I said to myself, “Shit! That’s power!”

Did that mean you were ready to disclose at work?
Not at first. I started showing up at ACT UP meetings in my coat and tie. If I went to a demonstration, I would hold up a poster in front of my face. But when the market crashed that fall—on Black Monday—my CD4s also crashed to a little more than ten. That’s when I said, “That’s it—this job is killing me.” So I went in to my boss and told him I was HIV positive and that I had to get on disability.

A week later, at an ACT UP demonstration, Channel 4 local news shoved a mike and a camera in my face. That night, I appeared on the news with the words aids victim under my face. After that, I became a full-time activist and a media whore for ACT UP.

We’re going to jump right over a decade of AIDS activism—a time that included your founding of the Treatment Action Group (TAG), which famously covered Senator Jesse Helms’ home with a giant condom—and skip to your founding of AIDSmeds.com.Why did you decide to launch the website?
Peter: I burned out on AIDS activism in ’97 and left TAG. It was a really weird time for many people with HIV because we had spent a long time living in the moment and never thinking about the future. Suddenly, after years of thinking we were going to die, we had these powerful meds. Maybe we were going to stick around. I had a hard time figuring out what I wanted to do. It took me two years with a career counselor to decide about my future.

Why the Internet?
Peter: Very early surveys of Internet users showed that its second most popular use (after searching for pornography) was looking for health care information. I was doing my own HIV research online. At that time, there were only a couple of major sites—the Body and AEGIS. They were both thorough but shared the same Achilles’ heel: They were hard to navigate, and they were intimidating for newly diagnosed people.

Sort of like libraries without librarians?
Peter: Yeah, no one was holding your hand. Talk about intimidation. So my idea was to create one really well-written “book” for the person who was just diagnosed. Our through was to help people remain calm and know it’s not too much to learn if you take your time, breathe and read on. Especially if you allow other positive people to take you through it.

From the earliest days of HIV, there has been a very healthy skepticism among positive people about getting information from official resources. The HIV treatment newsletters that sprang up in the first days of the crisis and were created entirely by positive people were the boilerplate for what I wanted to do.

Enter Tim Horn, whom you met during the TAG years and hired just before AIDSmeds launched in 2000. Tim, when did you become positive?
Tim: I found out that I was HIV positive during my junior year of college in 1991. It wasn’t so much the fact that I was HIV positive that freaked me out, but the fact that I did not understand what HIV was or what it was doing to my body. Compounding matters was the fact that I was way up in western Massachusetts on a college campus and I didn’t feel very comfortable talking to anybody about it there. To overcome my fears and to quench my thirst for information—What is a virus? What is HIV? What is a T cell?—I threw myself into learning as much as I possibly could.

That must have come in handy by the time you got to New York. Did you join ACT UP?
Tim: I had already missed the ACT UP boat by the time I graduated and got to New York. But I ended up connecting with the American Foundation for AIDS Research (amfAR), writing and then editing their AIDS/HIV Treatment Directory, surveying everything that was going on in clinical trials with these experimental therapies.

I also hooked up with TAG, partly because I was interested in how we, as people living with HIV, could drive the research engine and influence the agenda for our own medical care. I worked with several other organizations, including the PWA Health Group, and later moved to Mexico City to help educate medical providers. They were gearing up for the availability of protease inhibitors down there.

I returned home after about 13 months. I was diagnosed with non-Hodgkins lymphoma—and officially received an AIDS diagnosis. There were a lot of questions as to whether I would be able to fight it off, because of the severity of the situation, but I did. As soon as that was over, I wanted to get back into the work I was really interested in. I’d known Peter for some time, and he asked me to work with him on developing the contents of AIDSmeds.com.  

Where does AIDSmeds.com get its information, and how do you make sure it’s accurate and up to date?
Tim: I’ve come to value primary sources of information. When I first started doing work for amfAR, there was no World Wide Web. You had to have subscriptions to all of the medical journals, and you had to travel to the various conferences. To this day, those two sources still have the best primary information.

Peter: Plus, we have contacts with most of the treatment activists, government and private researchers and medical people at the pharmaceutical companies.

How much do you rely on doctors, activists and readers themselves to inform the work that you do?
Tim: Our fellow advocates have always been a major source, not only for information but also for encouragement in terms of the issues that are the greatest focus right now. We also work with researchers, both those who do their own work and those associated with the pharmaceutical industry. Doctors treating people who are living with the virus, along with HIV patients themselves, are perhaps the most vital sources of information.

How has the info on AIDSmeds.com changed since the website was founded in 2000?
Peter: Our Lessons section has become much more comprehensive. Now it
includes information about nutrition, depression and topics specific to women and children with HIV, for instance. We introduced real-time translation into Spanish in 2004. That was a gamble, but it worked and is partly what’s made the site so international. Our traffic used to be 90% U.S. users and 10%
international, and now it’s almost evenly split.

Our target audience back then was the person who was newly infected and looking for basic information. But we asked ourselves what more we could offer. We’ve added interactive tools like Graph My Labs and Check My Meds, both of which are hugely popular. Any time people add a medicine or a vitamin to their regimen, they can see how it interacts with their HIV meds. Graph My Labs helps decipher the lab work most positive people get every three months.

Tim: There is no arguing that HIV positive people have it better today than they did in the past. But in terms of sorting through the information, it’s harder than ever. Simply because HIV has become such a complex medical disease to understand, doctors have so little time to spend talking with their patients and there are so many sources of information out there now to choose between. The point of AIDSmeds.com is to be not only a source but also to keep things as reliable and as accurate as we can.

You get a lot of traffic in your Forums. What goes on in there?
Tim: When we first started the Forums in 2001, we were getting mostly medical questions about HIV from positive people. Over time, we also started to get lots of questions from people worried about their transmission risk and wondering about testing. So we created a separate Forum for HIV negative visitors to receive support and accurate information. AIDSmeds has become less of a 7-Eleven of treatment information and more like a family home. We have people who stop in with a particular issue but end up staying around because of the sense of camaraderie. Our family continues to grow as members provide information and support.

Is it the family feeling that makes the Forums so successful?
Peter: I think the primary reason our Forums are so well attended and so widely respected is that we have closely moderated them from the very beginning. When you don’t closely moderate Web discussions, they quickly become chaotic. And then people don’t stick around.

Tim: Also, because our Forums have a sense of familial bond and because so many people are visiting the Forums on a daily basis, it has become almost a self-policing site.

Are newcomers and newly diagnosed users welcome?
Tim: Absolutely. We have several members who go out of their way to make sure that each and every new visitor to the Forums is properly welcomed.

What has been the response in the Forums since you announced the merger with POZ?
Peter: Generally, the response has been very positive.

What are their biggest worries?
Tim: Some people are concerned that because we will be running banner ads from pharmaceutical companies for the first time, they will no longer be able to talk openly and freely with each other about their treatments or express any criticism of that industry. Peter and I cannot stress enough that none of that will change.

What are the benefits of merging AIDSmeds with POZ?
Peter: The idea of merging with a company that was 20 times our size got my creative juices going about where I could take AIDSmeds.com—like building more interactive tools or hiring more experts to answer questions in the Forums.

Tim: Handing over fundraising and management of the website frees us up to work on the actual content of the site. And, as you know, I’ll be the treatment editor at POZ as well.

Are there political advantages to this  particular merger?
Peter: The thing besides the pooling of resources that made this merger so smart was that we really weren’t that competitive with each other. POZ.com has the magazine and POZ Personals, for instance. We were doing different things well. So the merger just basically brought all those resources to both audiences. That’s something that in this political climate is, yes, a big plus: We’re bringing more and more people with HIV together.

AIDSmeds.com has always had “HIV+ owned and operated” as its tagline. How important has that been?
Peter: It’s hugely important. Community-based educational resources remain to this day the primary resources for people with HIV to flock to—and trust. Of course, these university sites and these government sites are run with budgets that are 50 times larger than what we’re run with. But we’ve got much more experience than they do—as far as our treatment activism and knowing the history.

There are some people at the parent company who are HIV positive but others who aren’t. So we’ve changed the tagline to “Founded and operated by people with HIV.” We’ll be involved in creating treatment information for AIDSmeds.com and now, also for POZ magazine and POZ.com. And we’ll continue to bring users the experience and perspective of what it’s like to be HIV positive. In the end, that’s what’s most important.


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