Your Experience is a Gift

We feature real stories from people who have chosen to use PrEP as one way to protect themselves from HIV. If you have used or are using PrEP, we invite you to share your PrEP experience via audio, video, or in writing. Send video or audio links and/or text to myprepexperience@gmail.com and we will post them here. You can include your name, or you may contribute your story anonymously. This blog also contains helpful information on PrEP for users, potential users, and providers. Look for the links in the sidebar.

We have not heard of any insurance company or any Medicaid program outright denying coverage of Truvada as PrEP. Some companies and programs are requiring prior-authorization, however, which requires paperwork to be filled out. And the type of insurance coverage you have, including prescription drug benefits, will determine the cost to you as the consumer. To date, we have seen the biggest barrier to obtaining PrEP from providers who are unwilling to write a prescription.

If you have trouble getting a prescription for Truvada as PrEP from your provider, or getting a PrEP prescription covered by insurance or Medicaid, we are happy to troubleshoot with you. Send us an email to myprepexperience@gmail.com.

Tuesday, March 5, 2013

I began taking Truvada on July 19, 2011, and haven’t missed a dose since


I learned as much as I possibly could, gathered up a stack of information, and decided this could be the right prevention strategy for me.


by Damon L. Jacobs
New York City

It was one thing to come out about my decision to take PrEP. After all, I have worked most of the past twenty years as a psychotherapist and safe sex educator in both New York City and San Francisco, and have discussed the complexities of condoms and risk-reduction with hundreds of individuals and couples, both HIV positive and negative.

But it wasn’t until I was sitting on the Huffington Post Live set with a surprisingly large camera pointed at my face that I began to panic: “Are you really going to talk about barebacking for the whole world to see? Do you really want everyone to ask if you’re taking loads from positive guys? Won’t this ruin your professional career and reputation?”

Believe me, I understand the importance of condoms.

My early education and training in Psychology took place in the California Bay Area during the early-mid 1990s. That was a time when loving people with HIV/AIDS meant losing people with HIV/AIDS. You would see friends, acquaintances, lovers...and then you wouldn’t. I was one of those volunteers that stood on the corner of Sanchez & Market giving out condoms, lube, and pins that said “100%.” The implication was that we could end HIV by 2000 if everyone used condoms “100%” of the time.

It was estimated then that half the men living in San Francisco carried HIV, so I had been prepared statistically to be fucked at some point by someone positive, knowingly or not. Instead of hiding from that reality, I learned the facts. Condoms, if used correctly, would protect me about 98% of the time. I was comfortable with a 2% margin of risk and set out to have a satisfying and healthy sex life.

Flash forward twenty years. In early 2011, I found myself newly single after the end of a six year relationship.

I was turning 40, and experiencing a loss of physical sensation down there, both as a top and a bottom. I was also finding that, unlike the 1990s, new partners didn’t want to use condoms. And to be honest, I didn’t want them to use condoms either! I found myself having more and more slips and near-misses, where condoms were only partially being used. I was, to put it clinically, becoming “very high risk.”

By happenstance I went to a forum at Gay Men’s Health Crisis where I learned about this new medication that could reduce one’s risk for becoming HIV positive by over 90%. There were some researchers from the iPrex study there, and some community leaders, but no one who actually had any experience taking this drug was on the panel.

I learned as much as I possibly could, gathered up a stack of information, and decided this could be the right prevention strategy for me.

I took this pile of data to my doctor, and we had a very frank and open discussion. We talked about my risk for HIV and my struggle to stay negative despite my recent behaviors. I explained that most people I knew who seroconverted had had a sense of fatalism involved, perceiving HIV as a “when” not an “if.” For the first time in my life I was beginning to experience that sense of HIV inevitability for myself, and it terrified me. With that information, my doctor determined it would be appropriate for me to begin using Truvada as an effective risk-reduction strategy. I began taking Truvada on July 19, 2011, and haven’t missed a dose since.

Since beginning the regimen, more information has been learned about its efficacy, and it is now believed that daily use (ie, seven days a week) of Truvada may reduce risk of HIV transmission by 99%. That is higher than condoms!

And now the question they didn’t ask on the Huffington Post: "Are you knowingly taking positive loads?"

To that I return to the world of statistics. Twenty years ago, I knew that condoms could reduce the likelihood of becoming HIV positive by 98%. Those were odds I was willing to gamble with. Today I know that daily use of Truvada may reduce my risk of becoming HIV positive by 99%. Furthermore, if my partner is able to maintain an undetectable viral load then his probability of transmitting HIV is reduced by 96% or more. Given the escalation of gun violence in the U.S., it seems I am statistically more likely to get shot right now than to get HIV.

So yes, I have had positive partners, and yes, we are making decisions that are based in health, safety, and pleasure.

That being said, I must urge anyone reading this to make sure you only begin using PrEP in tandem with a doctor. Truvada is not a casual drug, you cannot stop and start it at will without the possible consequence of your blood building resistance. Please only use this regimen after a doctor has drawn your blood, determined your HIV negative, and healthy enough to begin using this medication. If you don’t have a doctor with whom you can discuss getting fucked up the ass, then you have the wrong doctor.

Have I experienced backlash from using PrEP? You know it. The hostility from a prominent service organization has been appalling. The messages and comments left on websites where I have discussed PrEP have been degrading and insulting. Fortunately, I am trained as a psychotherapist to recognize angry fear-based thinking, which is a natural consequence of growing up and living in a homophobic culture.

Many gay men have internalized such a deep sense of shame and guilt related to sex and pleasure, that they can only react to the idea of “PrEP” with automatic and irrational attack.

At the same time, I can honestly say that the majority of feedback I’ve received has been supportive, appreciative, and quite curious.

How do you know if PrEP is right for you?  Ask yourself: If you were female, would you take a birth control pill to prevent unwanted pregnancy ? Both PrEP and birth control involve a daily and proactive commitment to maintaining one’s sexual and physical health. Both involve adherence and consistency in order to protect from an unwanted consequence And both involve potential stigma from angry and ignorant outsiders.

I encourage you to learn more and make decisions that are based in integrity, respect, and compassion for yourself and your partners.
I am open to answering any questions at Shouldless@gmail.com
Damon L. Jacobs is a Licensed Marriage Family Therapist in New York City, who specialized working with individuals and couples in the GLBT community. He has spent 16 years treating issues related to HIV/AIDS, stress management, bullying trauma, grief/loss, suicide management, care-taking fatigue, substance abuse, domestic violence, and anxiety disorders. He is the author of "Absolutely Should-less: The Secret To Living The Stress-Free Life You Deserve."

To learn more, contact Damon at Shouldless@gmail.com, or visit www.shouldless.com.

7 comments:

  1. Terrific. Honest and based in real-world risk behaviors. Voices like yours will rile people up, sure, but the discussion that follows will be important and hopefully illuminating. Thanks for sharing this.

    Mark
    My Fabulous Disease

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    1. Thank you so much Mark for being so fearlessly outspoken and inspiring!

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  2. I am beyond impressed, Damon. I've always admired you for your openness, honesty and simplicity. I've not acknowledged your bravery enough and so now I'm going to: You're my fucking hero, dude, because you are the boldest and bravest badass I know. Thanks for sharing your experience!!

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    1. Hey Unknown, your identity is unknown but your kind words are very much appreciated!

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  3. As someone who started this therapy a week ago I commend you for being brave enough to speak about its use as another tool in the HIV prevention tool box. I will be watching this blog for more updates :)

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    1. Thank you Jonathan!! Good for you for making such a courageous and responsible decision. Let me know if I can help.

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  4. Thanks, as always, for your clear and honest thinking. Chris (on PrEP since 11/2013).

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