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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: Yeah.

Mathew Rodriguez: One of the reasons that I chose you three for this roundtable is that, not only are you part of The Body's family, but you're three people who consider themselves, in one way or another, to be activists. And I wanted each of you to first discuss -- now that we've kind of gotten that you are all on treatment -- to discuss, I guess, what has been your history with activism, what activism you've done up to now, what you're doing now, and what you think it means to be an HIV-positive activist.

Marco Benjamin: We'll let Maria go first.

Aaron Laxton: Ladies first. Ladies first.

Maria Mejia: OK. Thank you. Well, I started my activism 14 years ago. I started in small settings, like as a tester and HIV educator, with other peers that were newly diagnosed in the hospital, and also an HIV trainer for the Red Cross here, in South Florida.

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Maybe four years ago I decided to come out of the HIV closet globally. So, you know, I started creating spaces, like blogging for TheBody.com, for The Well Project. I founded international groups ... you know, spaces that people could come from all over the world and get information, and also support -- something that I didn't have when I was diagnosed. Because there was not even Internet; there was nothing.

So this will be my fourth year of social activism. I am a global speaker now for AbbVie, which is Abbott. I'm going around wherever they call me to go and speak, to either their lab reps, or to patients. Because I have been on both sides of ... not wanting to take meds and now pro-medication completely, because it saved my life. You know, just being part of anything I can to get my message across, and as a Latina, as a woman, as a lesbian. I believe that HIV, as we all know -- they have different faces, different religions, races, sexual preferences. So it's important that all of us are joined. Because all of us united are creating that, I guess -- you know, we call it that action, which is to me what an activist is, putting ourselves out there to help others.

Aaron Laxton: I was diagnosed on June 6, 2011. June 7, I made my first video for YouTube. And that was really what served as the catalyst for getting out there. I remember, like many newly-infected patients, I kind of scoured any magazine or any source of information. And I remember saying I want to be one of the people that is a mover and shaker. I don't want to sit idly by and let decisions be made without me.

And so before HIV and AIDS activism, I had done advocacy for foster care. And so it was kind of a natural segue.

Then in 2012 -- 2013, rather -- I wanted to continue doing the YouTubes, but I wanted to focus more on writing. That's kind of a loaded question: What is activism?

"It's our job as an activist to keep people honest." -- Aaron Laxton

Activism can be something as little as writing letters, or going to a rally; or it can be something as big as doing an action where you're chaining yourself to a building. And so each person has to make that decision, what activism is to them. For me, it's letting my voice be heard and holding people accountable. And it's trying to be fair and balanced on my critiques of organizations and entities. It's our job as an activist to keep people honest.

Maria Mejia: Yeah.

Mathew Rodriguez: That's great. That's a really interesting comment.

Marco Benjamin: I was diagnosed back in 2008, in July, being HIV positive. I have not been doing activism work in the HIV field for as long as some of you guys have. My background was architectural design ... until I woke up one morning and realized that HIV activism can be a part of my life.

I started out volunteering for an internationally recognized AIDS organization, and started doing some protesting and conversation around Johnson & Johnson's high-priced medications, in New Brunswick, New Jersey. That was my first initial campaign that I participated in. Because I really wanted to do something. And, at that time, I thought that HIV and AIDS only existed in Africa. I know this may sound crazy. But where I come from, and where I live, HIV and AIDS is not blatantly out there, in your face. And that was one of the reasons why I wanted to become an activist and do something about it, and really be out in people's face, and really out in the public, and bringing some conversation and some attention to the epidemic.

I wasn't fortunate enough to live in a city where there were billboards and posters telling you to protect yourself, or to have safer sex practices. So it started with Johnson & Johnson campaigns and then from there many Gilead-focused protests and campaigns all over the country, and also, just up until recently, participating in a "Yes on D" campaign to lower drug prices, in general -- not only for HIV and AIDS, but all across the board -- in San Francisco; and allowing the San Francisco government to have a say-so and to try to help them lower the prices of meds.

Aaron Laxton: Maria said something that I really ... I just hold Maria in such high regard for the work that she's done. And she really has been in this fight. She's one of our pillars, is how I look at her. But she said something very interesting. She's serving Latinas. She's said, "You know, I'm lesbian." Each one of us has an audience. My audience may not be the same as any other person out there. And so, really, that's where our strengths are, as activists and advocates.

You know, I'm not trying to go and try to speak to the Latina population, because I'm not a Latina. I'm a white gay male from, you know, the Midwest. And so we just do what's comfortable for us, and it gains traction. Somehow it just happens overnight, it seems like, you know?

Marco Benjamin: Yeah, for real.

Maria Mejia: Yeah.

Mathew Rodriguez: Maria, actually, I wanted to ask you a question, based on something you had said. And even if it's not something you believe anymore, I would love to hear, I guess, what, at the time, your anti-medication attitude was, when you used to have it.

Maria Mejia: Well, first of all, I got in the hands of these people that are called denialists, dissidents. They're very, very much out there, and they're scientists, and they're doctors; and they have documentaries, like The House of Numbers. And they prey on the vulnerable to try to confuse us. So basically I did believe HIV existed. I wasn't that fanatical as they are, where they deny that it exists. But I did believe -- and this was the younger me, and the scared me; because I was so young, and felt so healthy that I just thought, I am not going to take these high dosages of AZT; I'm scared. Because they wanted me to sign a waiver saying that I could damage my internal organs back then.

So I took everything natural that you could think of, because my mother has a health food store and a vegetarian restaurant; and tried natural alternatives, therapies. I even drank my own urine because that's a therapy from Japan called urine therapy. I mean, I did it all.

Eventually, as I said, even as positive as I was, as healthy as I was, as spiritual as I am, and continue to be, nothing that I did helped me. After 10 years, the virus took control and destroyed my immune system. And I almost died.

That's why a lot of people, when they write me, they say, "Oh, I'm going to leave my medication and then when I get sick," You know, people from all over the world. People have a very -- not only all over the world but here in New York, too, some don't have the information. And they're like, "Oh, well, whenever I just don't feel good, or whenever my T cells go down," as you guys said, they say they would start their medication. I tell them, "No. Don't do that."

I'm very, very lucky that I'm alive. I could have been dead. I tell them, "As soon as you can, start your medication." My T cells have never, ever been above 350. Even though I've been undetectable for almost 14 years, it's not the same. So you should start treatment as soon as you can, and not do like I did. Because not everyone is as lucky as I am, or was as lucky as I am.

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