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HIV Treatment Activists Discuss Their Treatment History, and Their Rights as Big Pharma Consumers

April 17, 2014

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First, they were diagnosed. Then, they started treatment. Then, they advocated for others. In this roundtable, three treatment activists -- Maria T. Mejia, a Latina lesbian; Aaron Laxton, a gay Midwesterner; and Marco Benjamin, a gay Latino from New Jersey -- discuss the three very different roads they traveled to HIV treatment, and how that road eventually led them to activism.

As Aaron says, activists are tasked with "keeping people honest." In the spirit of honesty, panelists discuss their feelings about dealing with so-called "Big Pharma," the ups and downs of being on medication, and the next steps that today's activists must address.

Marco Benjamin

Marco Benjamin

Aaron Laxton

Aaron Laxton

Maria Mejia

Maria Mejia

Mathew Rodriguez: Hello, everyone. Just for those people who are reading, can you tell us about when you first started treatment, and what your first regimen was?

Aaron Laxton: For me, my first medication was Atripla. But it was through a drug study. And so I did my first 52-week study. Came off that study, went into another one before I made the decision to break the study, to go onto Stribild. And that's what I'm on now.

Mathew Rodriguez: OK. And when was that?

Aaron Laxton: I started on treatment July of 2011.

Maria Mejia: I was diagnosed in 1991. The only thing, really, that was available was AZT, in high dosages. I refused medication because of so many misconceptions that there were. I was pretty young. The only thing that you would hear is that it would kill you quicker, and in some other cases, I would see people living from it. But as a choice I decided not to take it for the first 10 years.

Eventually I was diagnosed with AIDS, 10 years after, with 39 T cells, no matter what I did, what natural therapies I did. So I eventually said, "OK; I want to save my life."

I started antiretroviral treatment almost 14 years ago. And that's what's kept me alive.

Mathew Rodriguez: And so when you started, what was available? What did you start?

Maria Mejia: Actually, since I like to do a lot of research and I'm very proactive with my condition, I did a little research. I wanted to do minimal -- because back then, people took so many medications. So I wanted to start with Trizivir. I went to my doctor and she basically told me that if I didn't take any type of medication, I would just die, like, in a month.

So I said, "Well, I've researched this medication. I want you to put me on Trizivir." I became undetectable like four weeks after. I was on it for 10 years.

And then after that, again, I went back to my doctor and I said, "I think it's time to make the change." And now I've been on Atripla ever since, after those 10 years on Trizivir. And it's been wonderful for me.

Marco Benjamin: I was diagnosed back in, I want to say, July 2008. I just recently started to take [antiretrovirals (ARVs)] this February that just passed. This is the first time I've actually had to take them. I just maintained a very high T-cell count of, like, 1,200 for the past few years. And now I am ... My first medication that they started me with, which I'm currently on, is Stribild.

Aaron Laxton: I think we have three different perspectives of where we are, as far as available treatment.

I was diagnosed in June of 2011, June 6. And I opted to start treatment almost a month to the day after I evaluated. Because the new research that we have shows it's easier to keep a person healthier if we start them on medication. So I think this roundtable is great, in that it shows three different perspectives of where we've been, and where we're going, and the three different schools of thought on it.

"I went through like 14 doctors the first year. I was trying to be proactive, and figured that I needed to get on antiretrovirals right away. And everybody said no." -- Marco Benjamin

Marco Benjamin: What you were saying, Aaron -- I mean, when I was first diagnosed I tried to go to whichever doctor that could prescribe me medications. I went through like 14 doctors the first year. And no one wanted to give it to me. I was trying to be proactive, and figured that I needed to get on antiretrovirals right away. And everybody said no. It took seven years for somebody to be able to say, "OK. You can take antiretrovirals now."

Mathew Rodriguez: I've heard that story from you before, Marco. But now, I guess, in the context of this roundtable, it's very interesting, about how proactive you were, and your age when you were diagnosed, and the different factors that go into it.

Aaron Laxton: And a patient that's diagnosed today, their primary physician, whether it's an infectious disease specialist or a generalist, the recommendation from the CDC is to automatically start that patient on ARVs ... whereas 10 years ago, like you're saying, Marco, you really had to jump through hoops to even get someone who was willing. And so times have changed because of new research that we have that shows that when we start treatment, we can sustain the quality of life.

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Marco Benjamin: At one point I was told to get a secondary opportunistic infection, and then I could get ARVs prescribed to me.

Maria Mejia: Wow. Wow.

Mathew Rodriguez: Do you think that maybe treatment-as-prevention has something to do with people wanting to get people on treatment more, as well?

Marco Benjamin: Yeah. If you think about it as simple -- I mean, I know Aaron had a few vehicle problems, automobile problems, the other day -- but it's just as simple. If your car, there's something wrong with it, or you hear that noise, why are you going to wait until the car blows up to then try and start to fix it?

Common sense. You know, like even a common cold: Start to take something immediately when you have signs or symptoms of it, to try to suppress it and keep it down low, before it really blows up.

Maria Mejia: I believe that, yeah, like you said: One of the motivators for many is not only to save our lives but, with the studies that are out there, that if you are undetectable and you're adherent to your medication, it's very, very ... you know, I still promote, of course, condom use ... but it's very hard to pass the virus to someone else when you're undetectable. So that, to me, is a big motivator -- at least for these couple of years, studies that have come out. And it's wonderful -- you know, like a form of preventing new infections.

Aaron Laxton: We had HPTN-052 that showed initially that a person that was undetectable had a very low risk of transmitting the virus. Now coming on the heels of CROI, we now have the PARTNER study, which was a more intensive study that looked at 16,000 MSM sexual contacts, and 14,000 heterosexual contacts. And they also did genetic testing. Through that genetic testing, they were able to prove that nobody contracted the virus from a partner who was on medications and undetectable.

So this is really groundbreaking research that just goes to the heart of what we're saying -- that if you're HIV positive, the quicker you can get on medication, the quicker you can become undetectable. So you're not only protecting yourself, but you're protecting others.

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