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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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Maria Mejia: I'm sorry to interrupt, Marco. This shouldn't be going on, here in the U.S. I mean, as Aaron said, this is very dangerous. You know, a person, if they suspend their treatment, they could become resistant and even worse -- not only to themselves, but maybe there's a possibility to infect another with a strain already. And there are other countries, what we call "Third World" countries, where patients get their medication. And they can't even believe that this is going on in the U.S.

That's something that gets me so angry. Because you shouldn't be going through that. No one should. That's horrible. Scary.

Aaron Laxton: Yeah. What we've established -- and it's kind of a holdover from the original days of ACT UP, and the early days of, as Peter Staley calls it, you know, the "plague era." And I really like that term because it shows where we've come from, and it shows the devastation that this virus that we all, if we're living with HIV, have, and the potential if that virus is not held in check. One thing that I've done with groups of friends who are also living with HIV is, we bank our medications. And so if one person runs out of medication we will make sure that the other person has the medication.

Because, at the end of the day, we only have ourselves. You asked the question earlier, if we had basically any moral dilemma, you know, as part of the system we're protesting against, to take the medication. I personally do not have a problem because, at the end of the day, this is what's keeping me alive.


I will be no good to anybody. I'll be no good to the movement if I get sick and I die. So it's not really a choice for me. It's ... I want to live.

Maria Mejia: Yeah.

Mathew Rodriguez: What do you think, what do each of you think? You know, there is a huge system when it comes to the way meds get approved, and the way they're marketed, and their cost, and the science that goes into the trials. What do you think is the role of,- like, ordinary people, who are not part of that chain of events? How can ordinary people who are starting treatment, HIV positive, or HIV-positive allies, or negative allies -- what do you think is the role of people in that chain?

Marco Benjamin: Knowledge is power, you know? And I think initially some of these folks need to educate themselves on the system and how some of this stuff works, and then be able to help the folks like us to create the change, whatever that change is.

Aaron Laxton: I would say that we have amazing organizations, like the AIDS Clinical Trials Group, or the HPTN Group, that anyone can become an advocate for. We work in the development of protocols, and we see that from the initial contact, all the way down to the completion of the protocol. So that's a very scientific way that a person can get involved.

Another way that people can get involved is, as we've seen in multiple locales and AHF has been really good at coordinating the efforts to: "Hey. We need to get letters to Congress to say this is not tolerable. You cannot monopolize the money." And that's something that AHF has done really good at -- coordinating those efforts of writing letters, and getting people involved, and getting the action going. So, kudos to them for that.

Marco Benjamin: Yeah. I second that. For sure.

Maria Mejia: I agree with both of them.

Mathew Rodriguez: Do you think these companies who make medications have a responsibility to the people who take the medications? Because I think most people in the corporate world would say, "Oh, well, they have a responsibility to their stakeholders." Do you think that they have a responsibility to the people who take medication?

Maria Mejia: Do you mean as far as Big Pharma?

Mathew Rodriguez: Yeah.

Maria Mejia: OK. For example, as I mentioned, you know I accepted to be one of their global speakers. And one of the things that they're doing at least in AbbVie/Abbott is, they're doing a campaign for the patients called Patient Centricity, where I -- basically, that's what I talk to them about, especially when I'm speaking to the lab reps -- that we're not just a number, that we're human beings, and that we are a priority of them.

So basically what I do is try to humanize us, so they don't see us as just that: as a dollar sign, or as a number. So it's important that, at least for me, that they see that human side, and it's just not about making money. We're very important to them. It's not just the medication that they have for us; it's important for us.

Mathew Rodriguez: That's great.

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