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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: Sometimes I taste the metal in my mouth, you know? No matter what I do naturally ... You know, I'm not a complainer, but I want them to do as much research as they do for creating new medications also for something for a cure for us.

Aaron Laxton: I just wanted to add that I was at a CAB meeting last night -- Community Advisory Board for the AIDS Clinical Trials group here, in my local CAB. And I made the comment to many of the CAB members who have been diagnosed with HIV since the beginning. In some ways, a new generation of those living with HIV, we're very spoiled. We have fixed-dose regimens, and life is a lot easier for us. You know, the side effects are much different. We hear horror stories of when people were put on treatment, that they had to schedule their entire day around how close they were to a restroom, because the drug would just go right through them.

And I think the second point is -- that Dr. Dieffenbach highlighted -- that this year research was going into that treatment and prevention, like you mentioned earlier. And what are those barriers? And also, the long-acting delivery method. You know, can we give a shot every three months of ARVs? Or even PrEP? We're starting to have that conversation. And so that's really how we can improve adherence and compliance to the medications.

Mathew Rodriguez: Yeah. These are all really good points. I know one of the things that like Maria was saying is that there are a lot of side effects. But also, this medication saves your life. So what would you say to someone who was hesitant about starting treatment, and being like, "Oh, it's a lot of money. Oh, I have to jump through all these hoops. I don't want to become part of a system. There's a lot of, just, things that happen when you start treatment."

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What would you say to someone? Would you try to redirect the energy and be, like, "Hey, start treatment, but also, now that you're living a better life, you know, maybe try and pressure the companies to do X, Y, Z"? Like, redirect their energy ... or something like that?

Marco Benjamin: You know, that's a great point, because I'm one of those folks that are in that situation now For about seven years, I didn't take HIV meds because I didn't have to, said the doctors. And now that I'm starting to take HIV meds -- I didn't really realize that -- I have HIV, I guess, now, because I'm taking this pill every day ... which is a daily reminder that I am infected with HIV.

When speaking with my doctor, the only option for me was Stribild; I kind of felt some type of way. Because, of course, I protested against them to try to get the pricing lowered, instead of $79 a day. And it's like I'm part of that system; I'm part of that corporate greed now. But I know I have to take this pill every day, so that I can live another day, to be out there and advocate for the folks that are living and affected by HIV and AIDS.

Mathew Rodriguez: Have any of you ever felt that tension?

Aaron Laxton: You know, I don't ever try to convince someone. We don't ever browbeat people. Just like Maria and Marco, I get people every day. You know, I probably get 15, 20 messages a week from newly-diagnosed patients. And I always tell them the same thing: Obviously, it's in your best interest to start medication. But before you ever really do it, you need to go to your local community pharmacy, and you need to get a bottle of vitamins. And you need to take them every day. And if, at the end of the month, you've been completely compliant, and adherent, then you're ready possibly to go on medications.

But it's a very serious decision to go on ARVs. And some people just are not ready for it, and they can actually do themselves more harm, by developing resistance and mutated strains.

Maria Mejia: And as far as ... What I always tell people is to, I guess, look at me as an example, and ask ... like if you're completely against HIV meds because you think it's going to kill you. I tried for many years, and the only thing that kept me alive was HIV treatment. So if I have to tolerate the side effects, well ...

I have two options: either to live, or to die. And I choose to live.

Aaron Laxton: And the other myth that we hear most commonly today is side effects. Side effects was a logical argument in the days of AZT, and even in the generation behind that. But today the side effects, which many patients, or some patients, might experience -- some neurological side effects, or whatever -- but generally those side effects go away, once your body gets adjusted to it.

So I always try to debunk that myth, that today side effects is not a good reason not to start antiretroviral therapy. Today. It was during AZT; not today.

Mathew Rodriguez: Aaron, before you had started going on that thread, one of the things I was saying was if anyone felt the tension that Marco was talking about -- about starting treatment but not wanting to have to give Gilead your whole paycheck, or some other company your whole paycheck.

Marco Benjamin: I was even down to, for my first bottle of pills, I was down to my last three pills for the month. And I went to go get a renewed prescription, and I'm still waiting from ADAP to get approved so that I can get another bottle of prescriptions, so that I can continue this new regimen that I've been put on. So, emotionally and mentally, it's like a roller coaster in my body, and in my brain, going on. I qualify financially for ADAP. And I should be able to be on it. But what's the hold up? I don't know what the problem is.

So now I'm begging Gilead again for another free bottle of pills so that I can continue this new regimen that I started.

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