Damon L. Jacobs is a New York-based Licensed Marriage and Family Therapist and HIV prevention specialist who focuses his work on health, love, and pleasure. Through his clinical work, Damon has spent two decades helping couples and individuals create joyful and sustainable relationships. He is also the author of the books RATIONAL RELATING and ABSOLUTELY SHOULD-LESS. He is best known for championing the use of pre-exposure prophylaxis (PrEP) through his work on social media, newsprint, broadcast appearances, including The New York Times, USA Today, MSNBC, NPR, Vice News, and more. He is featured as one of 35 “Leading HIV Activists” by The Advocate Magazine, one of the Top 10 “Influential Voices in HIV/AIDS for 2016” by Healthline Magazine, part of the “HIV Heroes” series through Metrosource Magazine, and one of the Ten “Most Captivating Voices of 2014” by HIV Equal. He was honored to receive a Commissioner Special Recognition Award for his work through the New York State Department of Health in 2016
JRK: Before we get into the interview, can you tell us a bit about yourself, your background, where you are from and all that good introductory stuff?
DJ: Sure! I am a 46-year-old Licensed Marriage and Family Therapist in the states of New York and California. I grew up in Culver City (next to Los Angeles), and moved to the Bay Area and soon as I was legally old enough to get the hell out of SoCal. I am fortunate to have a loving family there, whom I visit often, but always feel out-of-sorts and uneasy in the Los Angeles region. The Santa Cruz/San Francisco area always felt more like a natural fit, more a place I could relax and be at home. I moved to New York City in 2005 as a result of the events of 9/11/01. I knew that the city would be traumatized for years and I wanted to play some role in being part of the healing process.
Being a therapist is honestly the only work I have ever wanted to do, as far back as kindergarten. I’ve written two books about my work and perspectives on life, called, “Absolutely Should-less,” and “Rational Relating.”
JRK: You are very active in educating folks about PrEP through your Facebook group, “PrEP Facts: Rethinking HIV Prevention and Sex.” How and why did you become such an advocate for PrEP? Can you tell us about the purpose of the group and what you perceive its objectives to be?
DJ: Most of my life has been dominated by the trauma of AIDS. I was 14-years-old the summer that Rock Hudson was shamelessly exploited by the media when he was sick with AIDS. I knew long before then that I wasn’t a normal “boy,” and I knew that sometimes I thought about touching other boys. But when Rock Hudson appeared on my screen a voice said, “See you can’t be gay because that will happen to you.”
By the late 1980s, we received AIDS Prevention education (we did not use the term “HIV” back then) in public schools. It was basically a film with Whoopi Goldberg explaining that condoms could prevent AIDS if they were used for every sexual encounter. This was around the same time “Dangerous Liaisons” was playing in theaters, in which Glenn Close says to Michelle Pfeiffer, “I’m saying, you stupid little girl, that provided you take a few elementary precautions you can do it or not as often as you like, with as many different men as you like, in as many different ways as you like.”
I took these messages to heart and began exploring the wonderful world of bottoming in 1989, first in West Hollywood, then up in San Francisco. These were some of the darkest years of the AIDS epidemic, and everywhere you looked there were young frail men walking around with canes and oxygen tanks. AIDS was killing our brothers and sisters left and right.
My academic and professional interest had always been in psychology, yet I could not understand why psychology was training me to sit in an office all day while so much grief, trauma, and stress persisted in the real world. It seemed incumbent on me that if I was serious about helping and healing that I get involved in activism and education. I would get out, stand up, fight back and teach to ensure I was doing everything I could to be part of ending the HIV epidemic. For most of the next 20 years, I would do trainings, internships, job placements, and work related to something HIV or prevention focused. And during these two decades, new HIV rates in the U.S. didn’t drop once – they stayed around 50,000 new diagnosed infections per year.
By 2010, I was trying to build a private psychotherapy practice in New York City in the middle of the worst recession of our lifetime. I had the great fortunate to get a part-time position doing education/recruitment for an HIV vaccine trial during this time, where I would get to run around New York City in the middle of the night, talk to people about sex, and hopefully get them interested and inspired to be part of an HIV vaccine trial. It was through this job that I heard about the results of the iPrex trial at the end of 2010. This was the first trial to show how well a pill called Truvada could work for pre-exposure prophylaxis or PrEP.
When I first learned about PrEP I honestly didn’t give it much thought. But over the next few months, I learned more and decided this daily pill would be the best way for me to remain HIV negative. I began taking it July 19, 2011, and have used it consistently ever since. The only “side effects” I’ve experienced are much more energy and euphoria now that I can finally have sex without fear of HIV. The weight of that trauma going back to Rock Hudson in 1985 began to lift – I finally felt I was in control of my body, in control of my sexual health, that I could experience a man inside me and not worry about paying the price for that with my life.
After the FDA approval in 2012, I thought for sure that people were going to learn about this drug. But for the most part, it was ignored by the media, the agencies, and the organizations that were set up to help people. Furthermore, the only information on the Internet available was coming from a certain HIV organization that was stating inaccurate and misleading facts about PrEP in order to dissuade people wanting to use it.
In Summer 2013 I lost my job working on the vaccine trial, as the vaccine we had been testing for four years proved to have zero efficacy. And then it was around the same time that a friend of mine became newly HIV positive, having had no knowledge that PrEP existed. And I thought, “Okay, this is getting weird. We have an FDA approved a drug that reduces the possibility of getting HIV by more than 99%. Yet no one knows about it. How can this be?” And a voice answered back, “If no one will talk about it, then YOU talk about it. This isn’t the 90s anymore, you don’t need an organization or money to get your message out. You just need a wifi connection and a really big cup of coffee.”
And with that, I created the Facebook group on July 1, 2013, in my living room in Brooklyn in my boxers. It was the first and is still the largest, group devoted to discussing Facts about PrEP, dispelling myths, sharing resources, supporting backlash, creating community, pushing back against the barriers to access. Much to my surprise this thing got media coverage rather quickly in The New York Times, was mentioned in the World Health Organization’s PrEP Guidelines in 2015, and now has more than 20,000 international members.
JRK: There is a lot of misunderstanding about what PrEP is, what it does, and who should take it. Can you give readers some basic information about PrEP in terms of what it does, how effective it is, and what some of the side effects may be?
DJ: I don’t believe I have the authority or right to tell anyone what they “should” do with their body. But I do believe that PrEP can help anyone who is at risk of acquiring HIV. PrEP protects in a way so that if
detectable levels of HIV enter me, it has no way to duplicate or replicate. It has now been seen to be over 99% effective in preventing individuals from acquiring HIV when taken as prescribed. The only side effects I’ve had in 6.5 years are great sex and better sleep not worrying about HIV. But about 1 in 200 people may have changes in kidney functioning and for that reason, the CDC recommends people have their renal functioning checked twice a year. Five years after the FDA approval, we are seeing that so far this has only happened to people over the age of 40, most of whom had a previous medical condition. In all cases so far, when someone stopped using Truvada, their kidney functioning went back to normal shortly after, there have been no reports of irreversible damage done by using PrEP.
JRK: Being a PrEP user myself, I know there is a very rigorous monitoring process that one has to undergo before and while taking PrEP. Can you shed some light on what someone would have to do before and while taking PrEP such as the tests involved, and other such procedures?
DJ: The Centers For Disease Control (CDC) offers “tools, not rules” for providers. They offer a standard of best practices that providers can follow if they are going to prescribe PrEP safely and ethically. Unfortunately, not all prescribers are following this protocol, and that’s where some potential harm can come in.
If someone is already HIV positive and doesn’t know it, and then uses Truvada thinking it’s for PrEP, then the virus inside their body can build an immunity and resistance to the medicines in Truvada. It gets confusing because Truvada is a drug commonly used by people who are HIV positive AND people who are HIV negative. The major difference being someone who is HIV positive would use it in combination with other drugs to suppress the HIV virus to an undetectable level. A person who is HIV negative would use
Truvada by itself to PREVENT HIV from duplicating and replicating in their body.
This is why CDC protocol expects people using Truvada for PrEP to get tested for HIV before starting PrEP, and then about a month after starting. They are then expected to get tested for HIV every three months in order to avoid this potential issue of resistance. CDC protocol also recommends that PrEP consumer get STI testing every three months, and kidney screening every six months.
So yes, it is a pretty rigorous process, but there is logic to it. When providers do follow this safety protocol, it really brings risks down to a minimal level.
JRK: There have been four (?) cases reported where people who have been taking PrEP have contracted HIV. Can you tell us a bit about these cases and whether you feel it is something PrEP users need to be overly concerned with?
DJ: Out of approximately 300,000 people using PrEP in the world, there have only been two cases of people acquiring HIV with verified adherence. That last part of the sentence is important because a drug can’t work if it’s not being taken. In the PrEP efficacy trials /demonstration projects, people tested newly HIV positive when (1) They were already HIV positive and in the window period when they started using PrEP, or (2) They did not have measurable levels of the drug
in their body. None of the 12,000+ people in trials where adherence was measured and verified acquired HIV when they took the drug as prescribed.
Now again, we do know of two real-world instances in the world, one in Toronto, one in Amsterdam, where an individual using PrEP with verified adherence did acquire HIV anyway. And believe me, those cases are being studied to try to understand why PrEP failed in those instances. It is likely we will see more of these cases in the future. But two out of 300,000 is still way more than 99%. If the drug only protected 99% of the time, we would likely have had 3000 HIV transmissions by now. [You may have heard reports about other cases. But adherence could not be verified in those other cases].
JRK: There seems to be a faction of folks that disparage the use of PrEP in that they think it promotes unsafe sex practices and facilitates the spread of STI’s since many folks do not use condoms while taking it. Don’t you find it rather confusing that there is such chagrin over the use of PrEP especially since an effective treatment to prevent the spread of HIV/AIDS has always been the primary objective?
DJ: I find it unfortunate but not confusing. Look, the people who are disparaging PrEP are generally the same people traumatized the way I was: We have been brainwashed into believing something terrible must inevitably happen if we enjoy sexual connection, that pain must accompany pleasure. The AIDS crisis did a number on all of us, I’m still unpacking the damage done to me from that time. So for a lot of these folks, it is impossible NOT to think of fluid exchanges and condomless anal sex as analogous to devastation, trauma, and death.
Part of what’s faulty in this logic is the idea that PrEP leads to condom decline. What little research we have on this subject suggests it is the other way around. Data going back to sexually active men between 1998-2001 reveals that only 16% of gay men used condoms consistently back then. HIV rates remained stagnant at 50,000 in the U.S. until PrEP started being used in 2014, at which point they dropped down to 37,600.
It’s not like PrEP is the reason why people enjoy bareback sex. After all, how did you, the reader get here? As my friend Mark S. King says, “Your mother liked it bareback!”
What’s also problematic is how people don’t understand the biases in STI sampling and population samples.
Are STI rates correlated with PrEP use? Of course!! If you have a group of sexually active gay men coming into your clinic every 3 months, many of whom are being properly tested with anal swabs for the first time, then, of course, you are going to see a rise. You can’t document treatment patterns on patients that you weren’t testing in the first place.
The trials showed us that STI rates were high among the participants who used PrEP because they were high in these groups, to begin with! Using PrEP did not significantly increase nor decrease STI incidence. But because participants were being tested and treated regularly, it means they were susceptible to coming in and getting tested and treated for more STIs. Now compare that to their non-PrEP cohort who may never receive anal swabs and testing for asymptomatic STIs, but are no less able to give them to others. When you look at these groups in context, you see that the numbers are always skewed disproportionately to the PrEP consumers who are getting tested/treated/ documented 3-4x more than non-PrEP consumers.
The researchers have anticipated that when you start offering PrEP and adequate STI services to a neglected community, you will likely see a rise, but then you will begin to see community levels of STIs decrease. That decline is already being reported in London, and I suspect we will see them in concentrated areas of the U.S. as well.
JRK: Do most insurance plans cover the cost of PrEP? In cases where it does not, what are some options for those who want to start using it but can’t because of the very onerous cost of the drug?
DJ: All U.S. insurance companies cover PrEP (except for religious based companies like Hobby Lobby). Some will push back, and try to distract you and dissuade you from telling you they don’t cover PrEP when they do. We have seen this dozen of times in the Facebook group. In EVERY instance when the consumer pushed back, the company backed down. That is the power of social media right there.
Medicaid in all 50 states covers PrEP. If someone has no insurance at all, Gilead (the manufacturer) will pay for it if the person makes less than about $58,000 per year. They have an annual co-pay program of up to $4800 for any PrEP consumer in the U.S. regardless of income.
The only group that is left out in the U.S. would be Medicare Part D recipients. In these instances, many have opted to import generic versions of PrEP for approximately $30-$40 per bottle. This how people outside the U.S. have been accessing PrEP as well over the past five years.
JRK: What are some resources you would recommend for people considering taking PrEP or for those who are currently taking it, with the obvious being to regularly consult with one’s physician?
The Facebook Group, “PrEP Facts: Rethinking HIV Prevention and Sex.” We are a volunteer moderator team facilitating discussions 24/7 every day of the year. I would also recommend reviewing the materials on the CDC and World Health Organization websites.
JRK: What are some glaring falsehoods you hear about PrEP that should be addressed?
DJ: That “shoulds” are ever helpful in healthcare! 😉
I believe the most common falsehoods are ones we have already addressed here: That it is less than 99% effective, that people can’t afford it, that it destroys the kidneys, that it results in more STIs. The only other major falsehood we haven’t addressed is the belief that women can’t take it. That is extremely inaccurate and dangerous. PrEP is just as effective for vaginal / front-hole sex as well. The caveat here is that we don’t have as much research/data for women as we do for cisgender men. It is believed that Truvada is less ‘forgiving’ for vaginal sex, meaning it may be even more important for people using for front hole sex to adhere every day. Whereas we have seen people using it for rectal sex can skip doses here and there without a significant compromise in the drug’s protection. It is believed to be much more forgiving for rectal sex than front hole sex. But if a woman takes it daily, there is no medical reason it doesn’t protect from HIV just as well.
JRK: Is there anything you’d like to add to wrap things up, that may not have been covered already?
DJ: When I teach about PrEP I explain it stands for “pre-exposure prophylaxis,” but for 1000s and 1000s of us it has come to mean something more, it has come to represent, “Proactive, Responsible, Empowered Pleasure.” It is Proactive because (unlike latex) it can be done ahead of time in a mindful, sober, intentional state of mind. It is Responsible because when I take PrEP every day I’m not just protecting my own body but I’m protecting my sexual partners from being exposed to HIV as well. It is Empowered because it is the first time as a bottom that I’ve been in full control of my HIV status and health. And it is about Pleasure because this is about reclaiming our bodies and our sexual identities in a way that is celebratory, fun, and all about connecting and feeling good.