PrEP & Prejudice [cover feature]

PrepPrejudice0615

Pride 2015: A pill to prevent HIV, coming out of the PrEP closet and how “we the people have the power to make a better world.”

BY ERIC PAUL LEUE  |  PHOTOS BY DUSTI CUNNINGHAM

”Early on the morning of Saturday June 28, 1969, lesbian, gay, bisexual, transgender, and questioning persons rioted following a police raid on the Stonewall Inn [a gay bar] in the Greenwich Village neighborhood of New York City.”
                                                 —Wikipedia entry.

46 years later and still inspired by the Stonewall Riots, we celebrate the 45th annual Los Angeles Pride weekend to advocate for human rights, education, and better understanding of our community.

With 12 of 15 unlawful transgender killings in the US since our last Pride Parade in 2014, the ongoing struggle for marriage equality, and homelessness and health disparities soaring in our community; in many ways it seems that when reading the above statement not much has happened for us in that past half-century.

The last year however has brought much change to what we call “our community.” But what is our community, what do we really have in common, and what does it mean to share our pride?

In an interview with THE FIGHT three community activists talk sex, HIV, PrEP, and what they want to see in the coming year.

Lucas John Junkin is a member of West Hollywood’s Lesbian & Gay Advisory Board, where he moved to from West Covina after his dad once told him “If you’re gay, you aren’t my kid.”

Sabel Samone-Loreca is a Commissioner on the LA County Commission on HIV, and a ceaseless advocate for youth, trans people, the homeless, HIV and prevention.

James Cerne is a Boston native and has been in LA for about three years now. He dabbles in a lot of creative projects as DJ for parties on the Eastside and downtown, host of warehouse parties, clothes designer, dancer and actor.

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Lucas John Junkin “I think that you would really have to be in my shoes to understand the amount of empowerment, comfort and beauty that comes as a result of my decision to go on PrEP. That being said, I often worry about other STIs and for me the safest option is to use condoms with PrEP.”

HIV has made a big comeback in the media since our last LA Pride, why do you think that is?

Sabel: “I feel that HIV has always been a part of the discussion at LA Pride. Many of the booths offer lube, condoms and some even sell sex toys; my collection gets bigger every year. It’s intended both as prevention and to make safer sex more interesting and sexy.”

Lucas: “For the last 30 years, there’s a battle being fought for HIV awareness and acceptance, and hence, a line was somehow drawn between positive and negative men. I think the line is being blurred and is quickly dissipating due to new terms like undetectable, PEP & PrEP.  Today we have people of power fighting to keep the population off PrEP. The WEHO Lesbian & Gay Advisory Board has requested that the city council pass an item that would require all HIV testing facilities in the city to give information about PrEP to patients whose test results are negative. There’s no reason for people to be contracting HIV in 2015.”

James: “For such a long time we’ve been told there is only one way to protect yourself: condoms, condoms, condoms. Now out of the blue, it seems, a lot of us are hearing about a new treatment that could throw condoms out the window. People care about their health and the health of the community, and when game changing developments like this occur, people are going to talk, people are going to ask questions. It’s controversial.”

How does HIV affect you, those close to you, and your sex-life?

Sabel: “Thirty years have passed yet we—and by ‘we’ I mean transwomen of color, specifically—still face many problems and challenges around HIV. One of the things that make it so hard is the stigma and secrecy around HIV.

Funding for transgender-focused prevention; more competent healthcare; nutrition and other health-enhancing things just doesn’t exist. We hear about the high percentage of transwomen who have HIV and are sex workers, but do we hear about how many go hungry every day, or can’t find a place to sleep, or work? The thing that ties all of this together is STIGMA.”

Lucas: “It has impacted how and who I allowed myself to love. With advances in medicine (including PrEP) I can make empowered decisions based on health and safety on a level where I allow myself to live and love more freely.”

James: “I have many friends and loved ones who are HIV positive, and I see the levels of complication that it adds to their lives: Doctor visits, medication, etc. But management of HIV is not a death sentence or a trip to prison. Most of my HIV positive friends are on treatment that keeps their viral levels undetectable. The most important thing is to be open and honest about the subject with your lovers.”

What do you think about PrEP?

Sabel: “I’m very pro-PrEP. However I have issues around who has access to it, and how it is used as a tool of control by physicians. A friend of mine, another transwoman of color, was told by her physician that she would not be provided hormone therapy anymore because she had come in twice asking for PrEP. I don’t believe that this is an isolated incident, which is why I don’t want to see transwomen use Truvada instead of condoms.

Lucas: “I have heard about PrEP, but so many people haven’t.  By taking one pill a day, I can avoid contracting HIV. It’s a beautiful thing, really. I don’t tend to justify my personal decisions to the public; it’s really easy to talk about sex when you’re being silly with your friends, but it’s extremely difficult to strip for a magazine cover and divulge your personal business with the masses.”

James: “Everything I have heard about PrEP leads me to believe that it is highly effective at controlling the spread of HIV and should be widely available to those who are at most risk for contracting it.  Because I am not yet on PrEP I have to take more precautions.”

Sabel Samone-Loreca “Funding for transgender-focused prevention... just doesn’t exist. We hear about the high percentage of transwomen who have HIV and are sex workers, but do we hear about how many go hungry every day, or can’t find a place to sleep, or work? The thing that ties all of this together is stigma.”

Sabel Samone-Loreca “Funding for transgender-focused prevention… just doesn’t exist. We hear about the high percentage of transwomen who have HIV and are sex workers, but do we hear about how many go hungry every day, or can’t find a place to sleep, or work? The thing that ties all of this together is stigma.”

What do you feel are the benefits / risks of PrEP?

Sabel: “The benefit, obviously, is that fewer people will seroconvert, and if there is adequate access, this will really benefit youth who might be on the wrong side of sexual power dynamics. Some of the risks I am concerned about are: forgetting to take the medication; using it in place of condoms (and, with so much of the focus on PrEP, not really learning how to properly use a condom); incorrectly thinking about it like the morning-after pill (confusing PEP and PrEP). We really need to think about this from the perspective of young people, because they are going to have to carry this forward, especially if we really want to believe in an ‘AIDS Free Generation.’”

Lucas: “Obviously, I’m under the impression that I’m benefiting by protecting myself from contracting HIV, but I can also see a difference in my personal life, and how I choose to express my love and sexuality. I think that you would really have to be in my shoes to understand the amount of empowerment, comfort and beauty that comes as a result of my decision to go on PrEP. That being said, I often worry about other STIs and for me the safest option is to use condoms with PrEP. It’s not a black and white situation. Having a real conversation with my partner prior to intercourse may influence our joint decision to use a condom or not. I wouldn’t condemn anyone who is taking or using PrEP for HIV and relying on testing for the other STIs if they already don’t use condoms. A step forward is a step forward.”

James: “The benefits are that it keeps people from contracting an incurable and potentially fatal disease. When people talk about risks the conversation generally seems to quickly fall into moral arguments. One group of people seems to think the threat of AIDS is helpful to keep young men from fornicating constantly and indiscriminately. On the other hand you have people who want to chalk the whole thing up to an elaborate plot by big pharmacy to keep us all dependent on an expensive pill.

Public health isn’t a big James Bond style plot, if we can keep guns widely available to the public despite ALL the risks associated with firearms, why are we not giving people access to lifesaving medicine, when the associated risks are so much less serious?”

Have you thought about taking PrEP, or helping others to get access to it?

Sabel: “I am very interested in helping people gain access to PrEP. That is one of the reasons I sit on the Los Angeles County Commission on HIV. But on a more personal note, I have a young gay male friend. He is 25, and he is homeless. He engages in very risky sex with many people because that’s what he needs to do to keep a place to stay.

He did manage to get PrEP without a problem. He got it through the L.A. LGBT Center.

But having adequate housing, access to proper nutrition, help with depression—these are things that people need to give their medications an environment in which they can work properly. He seroconverted and was afraid to tell me. For him, though, his concerns were not so much about HIV as they were about simple survival day-to-day.”

Lucas: “I am pretty vocal about being on it. I field a lot of questions from friends about access and cost, I work with others to document our experiences and to share information online. I’m not an expert on this stuff but I’m trying my best to help everyone I can. My friends have actually been using the hashtag #boysonprep, and I think that it’s a small but significant trend on social media that is slowly catching fire amongst our peers between the ages of 25-35. The aim of all of this is to cause a dialogue and start a movement.”

James: “I’m currently in the process of applying to a study that will provide me with the medication for free, because even with insurance the cost is prohibitive for me.”

James, are the costs you are talking about high copays? There is a copay card by Gilead that covers up to $300 per month. There is also the Gilead Financial Assistance that helps cover the medication if you earn less than $58,500 per year, or there is Patient Assistance Network that helps with laboratory costs and all else.

James: “Yes, I would have a $100 copay, but wasn’t aware of the copay assistance. That would help me!”

James Cerne “I would like to see greater celebration and appreciation of the tremendous diversity within our community, in terms of age, gender, color, size, body shape and financial status. We have a tendency to self-segregate which is natural to an extent, but not always helpful. It allows us to continue carrying ideas about people who aren’t like us that aren’t necessarily true.”

James Cerne “I would like to see greater celebration and appreciation of the tremendous diversity within our community, in terms of age, gender, color, size, body shape and financial status. We have a tendency to self-segregate which is natural to an extent, but not always helpful. It allows us to continue carrying ideas about people who aren’t like us that aren’t necessarily true.”

Why do you think so many people are afraid to talk about HIV and sex?

Sabel: “You asked why people are afraid, but I think that it is less about fear and more about ignorance. We’re still living in a world in which public schools won’t even allow conversations about condoms, or sex—let alone LGBT issues. So instead of normalizing a healthy sex life, it is stigmatized by its very absence from the discussion. And that’s how young people start off their sexual lives: already learning shame and remaining in ignorance before they even become sexually active. At some point parents are going to have to learn how to discuss sex with their kids. The message that their kids should get is that they are worth protecting, whether they are gay, bi, straight and/or trans.

We also need more common sense when it comes to HIV. The stigma is real and until we can break through it we will continue to fight a losing battle—especially in my community, which faces so many stigmas from so many directions (gender, race, etc).”

Lucas: “Truthfully, I was afraid to talk about HIV and sex until fairly recently. I think that we’re afraid of the truth because of the shaming that goes on in the LGBTQ community. I hope that shaming is a thing of the past, and that we can all begin to relate to each other without prejudice. HIV doesn’t have to be the elephant in the room anymore, and it certainly doesn’t have to factor in to how we interact with each other.”

James: “We live in a culture that was founded on the idea of freedom (do whatever you want) by Puritans (everything you want to do is bad) and we still haven’t entirely gotten beyond those contradictory values. We still wrestle with those two incompatible ideas, and HIV/AIDS as well as sex in general is one of the areas where that ideological conflict really reveals itself. It’s much easier to talk about the Kardashians.”

What are your hopes for the coming year and our LGBTQQI family? 

Sabel: “My mom has been my biggest supporter throughout my entire transition. All along my journey, from starting to transition to my most recent health challenge with hepatitis C, she has encouraged me to take my medication, even when it felt horrible. She has listened to me, and continued to love and support me.

So I hope that everyone is blessed with a supportive family upon whom they can lean when they have to—even when they are grown. I hope that the access issues—for PrEP, or Harvoni or Sovaldi or whatever comes down the pipeline next—are resolved and that folks are able to access treatment, free of bias, discrimination and prejudice.”

Lucas: “I hope that we start to see each other as a family, and to realize that together we can accomplish anything. It’s time to drop the bitchy attitude and see ourselves as a group more united than any church or religion and more powerful than any government. We are family, and we’ve evolved into leaders of thought and peace, and we can change the world.  Ultimately, we the people have the power to make a better world.”

James: “I would like to see greater celebration and appreciation of the tremendous diversity within our community, in terms of age, gender, color, size, body shape and financial status. We have a tendency to self-segregate which is natural to an extent, but not always helpful. It allows us to continue carrying ideas about people who aren’t like us that aren’t necessarily true.”

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