HIV Treatment Activists Discuss Their Treatment History, and Their Rights as Big Pharma Consumers
First, they were diagnosed. Then, they started treatment. Then, they advocated for others. In this roundtable, three treatment activists -- Maria T. Mejia, a Latina lesbian; Aaron Laxton, a gay Midwesterner; and Marco Benjamin, a gay Latino from New Jersey -- discuss the three very different roads they traveled to HIV treatment, and how that road eventually led them to activism.
As Aaron says, activists are tasked with "keeping people honest." In the spirit of honesty, panelists discuss their feelings about dealing with so-called "Big Pharma," the ups and downs of being on medication, and the next steps that today's activists must address.
Mathew Rodriguez: Hello, everyone. Just for those people who are reading, can you tell us about when you first started treatment, and what your first regimen was?
Aaron Laxton: For me, my first medication was Atripla. But it was through a drug study. And so I did my first 52-week study. Came off that study, went into another one before I made the decision to break the study, to go onto Stribild. And that's what I'm on now.
Mathew Rodriguez: OK. And when was that?
Aaron Laxton: I started on treatment July of 2011.
Maria Mejia: I was diagnosed in 1991. The only thing, really, that was available was AZT, in high dosages. I refused medication because of so many misconceptions that there were. I was pretty young. The only thing that you would hear is that it would kill you quicker, and in some other cases, I would see people living from it. But as a choice I decided not to take it for the first 10 years.
Eventually I was diagnosed with AIDS, 10 years after, with 39 T cells, no matter what I did, what natural therapies I did. So I eventually said, "OK; I want to save my life."
I started antiretroviral treatment almost 14 years ago. And that's what's kept me alive.
Mathew Rodriguez: And so when you started, what was available? What did you start?
Maria Mejia: Actually, since I like to do a lot of research and I'm very proactive with my condition, I did a little research. I wanted to do minimal -- because back then, people took so many medications. So I wanted to start with Trizivir. I went to my doctor and she basically told me that if I didn't take any type of medication, I would just die, like, in a month.
So I said, "Well, I've researched this medication. I want you to put me on Trizivir." I became undetectable like four weeks after. I was on it for 10 years.
And then after that, again, I went back to my doctor and I said, "I think it's time to make the change." And now I've been on Atripla ever since, after those 10 years on Trizivir. And it's been wonderful for me.
Marco Benjamin: I was diagnosed back in, I want to say, July 2008. I just recently started to take [antiretrovirals (ARVs)] this February that just passed. This is the first time I've actually had to take them. I just maintained a very high T-cell count of, like, 1,200 for the past few years. And now I am ... My first medication that they started me with, which I'm currently on, is Stribild.
Aaron Laxton: I think we have three different perspectives of where we are, as far as available treatment.
I was diagnosed in June of 2011, June 6. And I opted to start treatment almost a month to the day after I evaluated. Because the new research that we have shows it's easier to keep a person healthier if we start them on medication. So I think this roundtable is great, in that it shows three different perspectives of where we've been, and where we're going, and the three different schools of thought on it.
Marco Benjamin: What you were saying, Aaron -- I mean, when I was first diagnosed I tried to go to whichever doctor that could prescribe me medications. I went through like 14 doctors the first year. And no one wanted to give it to me. I was trying to be proactive, and figured that I needed to get on antiretrovirals right away. And everybody said no. It took seven years for somebody to be able to say, "OK. You can take antiretrovirals now."
Mathew Rodriguez: I've heard that story from you before, Marco. But now, I guess, in the context of this roundtable, it's very interesting, about how proactive you were, and your age when you were diagnosed, and the different factors that go into it.
Aaron Laxton: And a patient that's diagnosed today, their primary physician, whether it's an infectious disease specialist or a generalist, the recommendation from the CDC is to automatically start that patient on ARVs ... whereas 10 years ago, like you're saying, Marco, you really had to jump through hoops to even get someone who was willing. And so times have changed because of new research that we have that shows that when we start treatment, we can sustain the quality of life.
Marco Benjamin: At one point I was told to get a secondary opportunistic infection, and then I could get ARVs prescribed to me.
Maria Mejia: Wow. Wow.
Mathew Rodriguez: Do you think that maybe treatment-as-prevention has something to do with people wanting to get people on treatment more, as well?
Marco Benjamin: Yeah. If you think about it as simple -- I mean, I know Aaron had a few vehicle problems, automobile problems, the other day -- but it's just as simple. If your car, there's something wrong with it, or you hear that noise, why are you going to wait until the car blows up to then try and start to fix it?
Common sense. You know, like even a common cold: Start to take something immediately when you have signs or symptoms of it, to try to suppress it and keep it down low, before it really blows up.
Maria Mejia: I believe that, yeah, like you said: One of the motivators for many is not only to save our lives but, with the studies that are out there, that if you are undetectable and you're adherent to your medication, it's very, very ... you know, I still promote, of course, condom use ... but it's very hard to pass the virus to someone else when you're undetectable. So that, to me, is a big motivator -- at least for these couple of years, studies that have come out. And it's wonderful -- you know, like a form of preventing new infections.
Aaron Laxton: We had HPTN-052 that showed initially that a person that was undetectable had a very low risk of transmitting the virus. Now coming on the heels of CROI, we now have the PARTNER study, which was a more intensive study that looked at 16,000 MSM sexual contacts, and 14,000 heterosexual contacts. And they also did genetic testing. Through that genetic testing, they were able to prove that nobody contracted the virus from a partner who was on medications and undetectable.
So this is really groundbreaking research that just goes to the heart of what we're saying -- that if you're HIV positive, the quicker you can get on medication, the quicker you can become undetectable. So you're not only protecting yourself, but you're protecting others.
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.
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?
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.
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.
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.
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."
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.
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.
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.
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.
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.