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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: I will say that I'm a bit more cynical than Maria, in the regard that, you know, let's be realistic. People living with HIV, just like our counterparts living with cancer: we kind of are a dime a dozen. If we were to die off, there's another one that's going to fill our gap. And so we have to really work with Big Pharma to where they don't see us as just a dollar sign, or a number on a spreadsheet. So that's really where the action is, by letter writing and getting out there.

All the pricing is always justified by R&D, research and development, of the drugs. Any conversation we have, that's what Big Pharma will always justify their price point for.

Marco Benjamin: And, you know, like you were saying, that HIV-positive folks are like a dime a dozen. How, then -- then I ask us here at the table -- then how do we stop this? What can we do collectively to stop the high rate of people with new infections? Why are we going to let them keep making this money off of folks that are becoming newly positive?

This is something that people have been trying to figure out for years; but there has to be something, more than education, to educate our youth, and folks to have safer sex practices. This way they don't become one of those folks, or a number, as we said -- part of that corporate, Pharma greed.

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Aaron Laxton: Well, in a perfect world, if we could wave a magic wand, we could create a boycott and we would have every person living with HIV come off of the drug company's drugs. And it would only take about a week of that before they would recognize the buying power of the patient. However, it's completely unethical, and I could not advocate for someone to do that.

Maria Mejia: Right.

Marco Benjamin: And in saying that, too, Aaron: I think a lot of us currently, right now, and a lot of the youth that are growing up, don't know what the epidemic was. We don't see what was seen back in the '80s anymore. We don't see people dying. We don't see people walking around, living with AIDS. That image is no longer there.

Maria Mejia: And to add to that, which is kind of ironic, I just wrote a blog yesterday about exactly this; my experience with the youth is that, when I speak with them, and it doesn't matter from what background ... well, the LGBT community is a little bit more knowledgeable. But let's say, when I go to schools around here -- and, of course, there's gay, and lesbian,and bi-, there, as well, transgender -- but what they believe continues to be that it is a gay man's disease, that it is a disease for people that are promiscuous, that do not look clean, as they say, or, you know, prostitutes and situations like that.

I've had young people write me, telling me, "Oh, is HIV in fluids?" And this ... you know, it really shocks me, the ignorance that exists, not only here, but all over the world. To me it's like -- and I wrote about this yesterday -- the combination of, there should be sex education in schools again. I should be able to speak about condoms, and speak openly, in schools. But I am not allowed to even say condom when I go to schools.

Number two: There should be conversations at home. At least, in our Latin American community, or in homes, we do not talk about sex. Sex is a taboo. And as far as people that are already infected with HIV, a lot of people do not want to come out of the HIV closet because they're afraid of stigma, afraid of discrimination. So I tell them, "If you're not willing to disclose, if you're afraid, or if you don't want to come out of the HIV closet, please at least protect yourself, and please take your medication so you're undetectable. So that way, the spread of this condition stops."

So you see, we have to hit it at all angles. And, as Marco said before, education is power, and is the key.

Mathew Rodriguez: Yup.

Aaron Laxton: I always quote these great activists and advocates from around the country. Peter Staley has said it at times, and Eddie Hamilton, out of Ohio, has said it, as well: Today's generation is standing on the shoulders of advocates and activists that have gone before us. Nothing changes if nothing changes. So if the generation today is complacent, and simply accepts the scraps off of the drug companies' table ... you know, we just go with it -- well, we have good drugs; we don't really need a cure; we have medications that can keep you healthy. If we become complacent, which some would argue that we are there; but if we become complacent, then we will stagnate and we'll never see an end to this epidemic.

Maria Mejia: Exactly.

Mathew Rodriguez: I just want to, I guess, ask you a final question. And it comes from something that Aaron said earlier. It's really important. It's that the job of an activist is to keep people honest. And it can be at any stage. What is something that you think people living with HIV, or people who are activists, advocating for people living with HIV -- need to be more honest about? Or need to urge people to talk about, rather; and be honest about?

Marco Benjamin: Well, most importantly, I think advocating and educating people to be open and honest about your status, knowing your status, loving yourself, loving your partner, and some loving condoms, if that's the situation; or love PrEP, if that's what works for you. But most importantly, advocate that people get tested regularly, know their status. And share your status.

I mean, there's apps that do it. You can get a copy of a piece of paperwork. What is better than to know that the partner you're about to have beautiful, hot sex with is HIV negative, or negative for STIs?

Mathew Rodriguez: Right.

"I would say that each person living with HIV needs to understand that they're a consumer, and that they have buying power." -- Aaron Laxton

Aaron Laxton: I would say that each person living with HIV needs to understand that they're a consumer, and that they have buying power. It doesn't matter what poverty level you're at; it doesn't matter if you have zero income. You have rights. You have a voice. And, as we've seen in Louisiana and North Dakota, it was when patients stood up for themselves, and they said, "Hey, this is an injustice," we started online petitions and we moved forward.

I think each person needs to understand: you don't have to sit idly by and accept what other people are doing to you as justifiable.

Mathew Rodriguez: Yeah. And we did move forward a little bit in Louisiana. I was really happy to see that. A little bit, temporarily. There's still work to be done, you know?

Marco Benjamin: It will get there.

Mathew Rodriguez: Yeah.

Maria Mejia: I agree with what Aaron said about, you know, being an activist could be as simple as taking action and writing a letter. Everyone, if we all do something about the situation and instead of fighting each other we come together, we could be a power force. We have the power. And everyone could do their own thing, in their own way. You know, others are more vocal. Others, as Marco mentioned, or Aaron -- that you get chained to a building. Others have the gift of speech.

You know, everyone has a gift, and we should all use that gift in order to create that change. But we can't do it alone. We have to be -- all of us have to be -- in it together. Not against us, but together, united.

Aaron Laxton: I would say one final thought for me -- I talk a lot; I always do that -- the best way that anybody, whether they're reading about this roundtable, or they're just living their lives; that's the best way to be an activist -- live a healthy life. Be healthy. Show others what the possibility of a healthy life with HIV looks like. And that's the best statement that any of us can make.

Maria Mejia: I agree completely.

Marco Benjamin: Yes. Lead by example.

This transcript has been lightly edited for clarity.

Mathew Rodriguez is the community editor for TheBody.com and TheBodyPRO.com.

Follow Mathew on Twitter: @mathewrodriguez.


Copyright © 2014 Remedy Health Media, LLC. All rights reserved.

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