Interview with Damon L. Jacobs (PrEP Warrior)

What is your personal story with your journey with HIV either as an ally to those living with HIV or being HIV-positive that you would like to share?

I first moved to San Francisco in 1990, which was during some of the darkest days of this epidemic.  Knowing people with AIDS meant losing people to AIDS.   Working with people with AIDS, living with people with AIDS, loving people with AIDS, fucking people with AIDS, meant losing to people to AIDS.  I lost a lot during this time.  So this was a call for me to get involved, get active, do SOMETHING to help prevent the spread of AIDS and HIV.

You do a lot of work getting information to the public about PrEP. Why are you so passionate about this and what got you started?

Because of the losses, I began working and/or volunteering in HIV prevention efforts back in 1991.  Back then, the only message was “condoms only.”  But this clearly was a limited message, given we still had 80,000 new annual infections in the U.S., (which eventually evened out to about 50,000 per year in the mid-1990s, and remained stagnant ever since).

I began using PrEP on July 19, 2011, before the FDA approval.  I understood back then that taken daily it was had over 92% efficacy.  What I didn’t know is the tremendous burden that would be lifted once I was no longer afraid of becoming HIV+.  A weight that I had been carrying for over 25 years was removed, and suddenly I had more energy, more focus, and much better sex.  I thought once the FDA approved use of Truvada for PrEP that everyone would be interested in learning about this.

By the time the FDA approved Truvada for PrEP on July 16, 2012, researchers understood it was closer to 99% effective when used daily.  So now we had an effective tool to prevent HIV, we had all U.S. insurances paying for it, but no one knew about it.  I wondered, “What if we had a way to end HIV and no one cared?”  So I started speaking up, telling more people, and eventually talking to media about this new revolution in sexual health and biomedical prevention.  It took another two years for people to begin learning about it, but eventually and gradually, through 2014-2015, there was a shift.

Are you a member of any other organizations or community groups that you’d like to tell us about?

I no longer am longer a  member of any non-profit, organization, clinic, corporation, etc.  It is by walking away from that world that I’ve had the freedom to do say what I want to say, and communicate most effectively about the emotional and sexual empowerment that PrEP can provide.

I did start a Facebook group called, “PrEP Facts: Rethinking HIV Prevention and Sex” on July 1, 2013.  This is a volunteer-run group that helps individuals from all over the world learn the science, data, facts, information about PrEP, as well as support with local resources, coping with stigma, maintaining adherence.

What do you think is the biggest problem today?

In terms of PrEP, the biggest problem is still ignorance, that people don’t know this prevention strategy exists, and how accessible it can be.  The medical profession is largely culpable in this regard, given that 1 out of 3 doctors still know nothing about PrEP (according to the CDC),  while others are still reacting to PrEP with stigma and moral outrage.

What are some words of wisdom you can offer to someone newly diagnosed?

I’d say that we are living in incredible times.  The life expectancy of someone diagnosed with HIV is not much different than someone without HIV.    If you are living with HIV, you still have the right and ability to experience great personal, professional, emotional, sexual, and financial success.

Where do you find the most support? Family? Friends? Professionals?

I find wonderful support within my chosen family, my biological family, and my relationship with God.  These are all necessary pillars in my life that allow me to work with love, clarity, and joy.

What do you think the biggest myth or misconception is about PrEP? 

The biggest misconception is that it will lead to the Next Big Catastrophe.  We have been so conditioned to associate pleasure with punishment and fear.  So when you remove HIV as a consequence of sex, people insist that something else terrible has to happen (a new disease, increased health disparities, etc).  I think we need to be aware of these issues in our society, but  other diseases, STIs, and financial injustice, has nothing to do with PrEP.  Yet Truvada frequently, and irrationally, gets blamed.

What challenges  or discrimination do you think exist or have seen for those living publicly with HIV?

I think those living publicly with HIV have challenges on both ends of the social spectrum.  Those who talk about it openly are often dealing with ignorance and clarifying misunderstandings on the HIV negative (or “maintstream”) side.  But then they are often unfairly scrutinized and harshly criticized by those “in the know” who have been living and working with the disease for decades.  Seems to be a thankless job, so it’s really important to thank those who are living openly with HIV, talking about it, and trying to help people learn.

Everyone tends to think about all the negative things about living with HIV. Tell us do you think there are any positive experiences? 

At the CDC Conference last December, one of the presenters of a session I went to discussed “the positives of being positive.”   Some of the potential advantages included:  Connection to healthcare, regular monitoring of non-HIV medical issues, better quality of relationships (as opposed to quantity).  In my therapy practice, I have often seen individuals living with HIV take better inventory of their lives and gain access to their true value, beauty, and power that extends beyond the body.

What do you hope people will get out of the HIV Smart campaign?

I’m hoping people will reduce stigma and fear related to HIV, and get a better understanding of how treatable and preventable HIV is today, so that they can enjoy deeper relationships and better sex!

What’s some of the more amusing experiences that may have had either disclosing or working in the HIV prevention field? 

Once you’ve talked about having condomless anal sex in the New York Times, there’s not a lot more to disclose.  But I’d say one of the more amusing experiences came after an interview I did with a reporter where I discussed the spiritual aspects of semen exchange.  I was really proud of the article, but not sure this was something I wanted to share on Facebook so that my mother and family would see it.  I debated about this back and forth for over a week.  Finally, I decided, “I’m proud of my work, I’m a grown man, I’m not going to hide this from anyone.”  I told my Mom I was going to post the article but “parental discretion was advised.”  My mother’s response was, “Oh it’s a great piece, your Dad and I already read it.”

What would you like to tell everyone reading this that we haven’t asked you?

PrEP technically stands for “Pre-Exposure Prophylaxis.”  For myself, and for over 20,000 consumers, it has come to me something more.  For us it stands for “Proactive, Responsible, Empowered, Pleasure.”  It is Proactive because it is done ahead of time in a sober, mindful state.  It is Responsible because we’re staying HIV negative and ensuring we are not unknowingly transmitting HIV to any partners.  It is Empowered because it is the first time a bottom partner has ever had control over their own HIV status.  And it is about Pleasure, because that is the reason most of us have sex, especially gay/bisexual men.

We have an unprecedented opportunity to be part of ending the worst plague of the past century. If every one would help their friends and community learn about PrEP, and Treatment and Prevention (TasP), then we will see the end of new transmissions in our lifetime.  Join me over at “PrEP Facts” (https://www.facebook.com/groups/PrEPFacts/) to learn more.