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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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Aaron Laxton: Piggybacking off something that Maria said: You know, she talks about these therapies, that we would kind of say, "Oh, wow. That's kind of like voodoo science, you know?"

But it's a common theme that we hear, especially of people that were diagnosed in the early days of HIV, and then moving on into the '90s. And we'd hear these stories of people going for these radical treatments, down to South America. I mean, we just had the Dallas Buyers Club, which -- thankfully, now HIV and AIDS are getting more public awareness. But that goes to the exact heart of the availability of drug treatment, and also the safety.

People knew that if they took AZT, they were going to get sick; that was a cancer drug. And so AZT was probably going to kill you, but not the progression of HIV.

Mathew Rodriguez: You know, I think it's really interesting that you brought up Dallas Buyers Club, because Dallas Buyers Club, for those readers who are reading this and haven't seen it, one of the quote-unquote villains of the movie kind of are the NIH and the CDC, and these people who are having to be told to do their job. And that's a big part of what ACT UP and other organizations did -- is that they had to tell the government and the pharmaceutical companies to do their job, and to think about people's lives being in the balance, and people's lives are at stake.

You know, Dallas Buyers Club was late '80s, early '90s; we're in a completely different world now, in terms of how treatment works and what science knows. And so I was wondering. You know, I think Dallas Buyers Club shows a lot of how the machinations of the whole system were really off for a long time. And they're definitely not perfect now, but they're really different.

What do you think about the way things work now? What are some of the problems that you feel activists should still be working on? Are there still pricing issues? Are there insurance issues? What are some things that you think are some next steps for treatment activists?

Aaron Laxton: Yes, yes, and yes. You know, we learned a very valuable lesson in the early days of ACT UP. So we fought. We shut down the FDA. We wanted accelerated approval for medications.

But then we quickly realized: Hey, we need to slow down a little bit so that we can get some safety data and efficacy, and stuff. And so we had, later on, came back and said, "OK, we're going to work with you and get a more appropriate schedule."

Yes, there are pricing issues. Yes, there is ... luckily right now we only have three patients -- and those three are in Utah -- that are on ADAP wait lists. But we know that with the Affordable Care Act, as we've seen in Louisiana and North Dakota, those living with HIV are the most vulnerable. And so those issues that ACT UP was fighting for in the early days still need to be an issue. We still have to fight for cure research. We have to fight to make sure every single patient that is living with HIV, (1) is diagnosed, and (2) they're able to start medication and sustain that medication once they start it.

Maria Mejia: I agree.

Marco Benjamin: Yeah. I agree, also. And, I mean, most importantly, too -- just to lower the prices of drugs, in general, is really important. Even if it's $2 a pill, it allows ... You know, we wouldn't have those folks in Utah on a waiting list because it allows ADAP to then purchase more medications to then provide to HIV-infected folks.

We still have to push. There's still a lot more work to be done. But as Maria and Aaron did say, too: We are in this together. And all of us have to figure a way that we can work together to actually make this happen.

Aaron Laxton: You know, what I will say: I've been very boisterous in critiquing multiple organizations and entities. Where Michael Weinstein and myself agree is that the price manipulation through Big Pharma is ridiculous. We have Sofosbuvir that came on the market earlier in the year. It was initially shown to cure hep C during a 12-week course. Now CROI tells us that within a six-week period it can be cured. However, the price tag for that, for a person living with hep C, is $84,000 for a full drug treatment.

You know, when I switched over to Stribild, the price point for Stribild is $3,000 a month, roughly. All the new fixed combination, or fixed dose, regimens -- the Stribilds, the Compleras, the Truvadas -- they have price points of $2,000 and above.

"I'm so grateful, because if it was not for the medication, I wouldn't be alive. So many of us wouldn't be alive. But at the same time, I would love for, and have hope that, Big Pharma will have some type of compassion." -- Maria Mejia

Maria Mejia: And I wanted to add something. You know, I'm so grateful, as I said before, that we have our medication. It keeps us alive. I really want to push for a cure. It's no secret that these medications -- they are, of course, less toxic. They do have a lot of side effects. I mean, I've had a lot of side effects because of the long-term, I guess, use of them -- you know, neuropathy and other little things. I know it's not as bad as it used to be.

But I'm like in the middle. I'm so grateful, because if it was not for the medication, I wouldn't be alive. So many of us wouldn't be alive. But at the same time, I would love for, and have hope that, Big Pharma will have some type of compassion. And I know we're a billion-dollar industry. And a lot of people make money off of us. I just want to hope that what other people say, it's not the reality; it's not the truth that there will never be a cure because it's just not profitable for them.

I just want to hold that faith that there will be, because I'm tired. That's it, point blank. I really am. I want to get to a point where I only talk about HIV to remember those that we lost. But I want to move on.

Or maybe even something like what they were talking about recently, some breaking news that I read, where they say that we get some type of treatment, but not take any more medication -- like a one-time thing, or at least a once-in-a-month, or something.

Marco Benjamin: Like once a month, or something.

Maria Mejia: You know? So we don't have so much toxicity, so much, you know, lipoatrophy, lipodystrophy. There are so many effects, you know?

Mathew Rodriguez: Mm-hmm.

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