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This PrEP-ed Life: Damon Jacobs on Sex and Dating in a New Era of HIV Prevention

May 13, 2013

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If someone were to come up to you and ask you, "Hey, who should be in the conversation about PrEP?," what groups would you name?

We know, statistically speaking, that there are about 50,000 new infections in the United States every year. For those of us who want to champion prevention efforts, I think we did a great job in the '90s of bringing down new infections. I used to stand on the corner of Sanchez and Market in San Francisco with those pins that said "100%" and give out condoms and lube and pins, because the message was "100 percent condoms and lube all the time!" Not fully understanding at that time how we were inadvertently creating a shame around those people who didn't use condoms and lube all the time, and kind of making their voices silent.

But, I will say this: If you look at the infection rates during the '90s and the early 2000s in this country, they continued to decline until 2004. Since 2004, almost the last 10 years, it's been about 50,000. So, who are these 50,000 people? In New York City, it's overwhelming black gay and bisexual men between the ages of 18 and 25. These are the group of people that are testing newly positive most frequently in New York, and I think that's also occurring in major urban areas across the United States. This is the population that needs to know about this. It's important that 40-year-old white guys know about it too -- like me! It's really important that everybody knows about it, but especially to help the message get into the communities where HIV is being transmitted at the highest rate.

Fifty thousand new infections in this country is 50,000 too many, especially now that we have a new, effective prophylactic prevention tool. There's no need to have 50,000 new infections in this country. There's no need to have 25,000 new infections in this country. But what if we could at LEAST reduce the number of infections by 50 percent? Wow. Wouldn't that be something? Well, you know something? PrEP, even when taken inconsistently, has been shown to be 44 percent effective. Even with people who took it once or twice a week. Forty-four percent is not enough, but it's still more than what we've had for the last decade. It's more than what just condoms and lube are doing if they're not used. So, I would say that anyone who is sexually active right now -- regardless of age, regardless of gender -- because we're also seeing a lot of new, I don't think it's that many, but there's always been a subsection of men who are in their 50s who did survive that first wave of HIV/AIDS, survived it as HIV negative, and experience something called condom fatigue. Or just think "Screw it" or "Hey, the meds are out there" or "At this point in my life, I'm going to die from something else, so why not, who cares about HIV." That's also the group who needs to know that there is a non-latex alternative to safer sex. So, it needs to be out there for people who are on Grindr, on any of those cruising websites, and are hooking up, and are not using condoms 100 percent of the time. We simply do not have any reason for the infection rates in this country to continue to be that high.

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Have you had any personal medical side effects from taking PrEP?

Not a thing. I would not even know I'm taking it, except it's a little blue pill that I take every day. No nausea, no nothing. My doctor is monitoring my blood to see if there are any side effects that I can't anticipate, that I couldn't feel, like kidney impairment or bone density reduction. Knock on wood, so far, so good. I personally have no side effects.

How would you recommend someone start the conversation about PrEP with their doctor?

Bring information with you. The great thing is that now the FDA did approve it. So there's so much official information -- FDA, CDC stuff, the stuff that's on TheBody.com -- there's a lot of really credible websites now that have valid, intelligent information about PrEP.

Talk about the research side. That's what doctors want to know, for the most part. Some of them may say, "That all sounds good, but I don't want to give you a prescription to go out and get HIV." And you say, "Oh, but look, I've actually found out -- study after study -- that if I take this seven days a week, I can be 99 percent protected from HIV. I'm not saying I'm going to go out there and get exposed to HIV." I've even said go and ask your doctor, "What if there was a vaccine for HIV? Would you ask your doctor for a vaccine if that was available? Well, we don't have a vaccine, but we do have something that's 99 percent effective until we do have a vaccine." Or I often say to gay men, "Think about if you were a woman: How would you approach your doctor about taking birth control pills?" The idea is, you can have sex for pleasure without adverse consequences.

Most of us grew up in a sex-negative paradigm, meaning -- especially for gay men -- there's a part of our brain that has internalized, "Sex is bad. Sex is dirty. Sex is embarrassing. Sex is shameful. I 'shouldn't' have these desires. And if I do feel these desires, then it's kind of wrong to feel good about them, or to talk about them." What I try to do is to get people to get around that and talk about sex as an affirmative, healthy activity that people can do. It can be done with respect, it can be a physically gratifying experience, it can be a spiritually gratifying experience, and there's nothing to be embarrassed about for enjoying that.

So know that. Own that. And take the data to your doctor and have a conversation. She or he may need some time to digest all that. They may not have heard of it. If you are the first patient or the first consumer to come to them and say, "Hey, I want this," they might need to digest that a little bit. They might need to look through some of your research or they might need to do some research of their own. They might need to do some consultations with some colleagues. Let them have that. They might need a few weeks. That's OK. But then, follow up, and find out. And if they're not going to support this, you don't have to continue to see them.

Now, all that being said, there may be medical reasons they don't agree with you taking PrEP. If you have certain medical conditions that could make you more susceptible to kidney failure or bone density reduction, your doctor may not advocate for this on medical grounds. But that's different from moral grounds. So I would say be clear in your heart, be clear in your mind, about asking for something that will empower your body, your mind, your spirit. That will keep you healthy in the long run, and don't be ashamed of asking for that.

Have you gotten any negative reactions from any communities about taking PrEP, and if so, how have you dealt with them?

The only negative feedback I've gotten has been when I've done something public or gone on a website or done some kind of presentation where it was on the Web and people would leave comments. These are the kind of websites where anything you put there's going to be negative comments, so I don't even read them to be honest with you. Those are anonymous; they're indirect.

The only negative response I've gotten has been from a specific service organization that has been publicly opposed to this -- that, for their own reasons, which I don't fully comprehend, don't think that it's wise for people to have the education and the information and the tools to keep themselves safe and HIV negative. I can't explain their motivations -- only they can -- and when they try, it makes no sense to me anyway. That's really the only negative feedback I've gotten.

You might be able to tell, I'm a pretty independent thinker. I've kind of always been headstrong and stubborn and done things my own weird way. So, people who know me already kinda know that this is Damon's life, and comments are not solicited. Friends and family who know me have expressed concern and I understand that and I respect that. But no one has come at me with a sex-negative "should" about this.

Is there anything else you want to say to our readers about PrEP? Something you want to touch on?

I certainly hope this makes people think about what's right for them. It's not up to me to tell anybody what's right for them. But if people want to know more, they're welcome to contact me at my email, shouldless@gmail.com, or contact TheBody.com, or contact your local HIV/AIDS resource organization. Ask more questions. Ask me questions. I don't know everything, but if I don't know, I'm happy to help people get the answers.

"This is not a drug that can be taken casually. This is not a medication you start, stop, start, and stop. This is not a Fire Island weekend party drug. This is my concern about PrEP. This is my worry. That is where there is danger for resistance to come in."

But here's the most important thing! This is not a drug that can be taken casually. This is not a medication you start, stop, start, and stop. This is not a Fire Island weekend party drug. This is my concern about PrEP. This is my worry. That is where there is danger for resistance to come in, and I'll explain what that means. What happens with Truvada in HIV-positive people is that Truvada is used in combination with other meds to keep the viral load down to zero, so that someone who is HIV positive can have a long quality and quantity of life. Truvada is used with other meds to make that happen. And so, in someone who is negative, Truvada is used alone. Truvada is the only medication.

What happens is, if someone is HIV positive and starts Truvada alone without other medications, their body can build resistance to Truvada. Let me say that again -- if they don't know they're positive and they start Truvada alone without taking it in combination with other meds, they can build resistance to Truvada. So, someone may think, big deal, who cares, there are 20 million meds out there. The big deal is that the most effective HIV meds on the market and all of those one-pill-a-days contain an element of Truvada in them. So, if you are resistant to Truvada, you are taking a lot of medicines off the shelf that can't help you if you are positive.

This is the danger. This is why it has to be done in tandem with a doctor, with a medical professional. Because what your doctor will do is first make sure that you are HIV negative. That you are not positive. But, today's Thursday, if I'm positive and I don't know it, and I'm like, "Party weekend! Black party! I'm going! I've got my Truvada, I'm ready!" If I take it without knowing I'm positive, then I might build resistance to Truvada and it's going to make the possibility of living a long, healthy, satisfying life as a positive person much more challenging.

So this is what people need to know. Take it with a doctor. Make sure you are HIV negative first. And do not take this sporadically as a party drug. Because that's where people can get in trouble.

This transcript has been lightly edited for clarity.

Mathew Rodriguez is the editorial project manager for TheBody.com and TheBodyPRO.com.

Follow Mathew on Twitter: @mathewrodriguez.


Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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This article was provided by TheBody.com.
 

Reader Comments:

Comment by: sumannaik (INDIA) Tue., Sep. 24, 2013 at 9:59 pm EDT
I NEED HIV CURE
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Comment by: Craig Allen (Raleigh, NC) Sun., Sep. 8, 2013 at 11:23 am EDT
Just so you know, when you're talking HIV+ people who are in the habit of using condoms out of using them because you are one single case in which you have money and insurance and know PrEP is being taken correctly, does, in fact, make you part of the "bareback brigade" who is actively breaking down the habit of HIV+ men wearing condoms when they top.
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Comment by: mary soilex (los angeles, CA) Tue., Aug. 13, 2013 at 11:29 pm EDT
Und what about women takin this? yus did not mention that. We have sex mit bi sexuals und straights who may be positive. So why not mention women? Can we take it? Please inform. Thenx.
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Comment by: Joshua M. (Culver City, CA) Tue., Jul. 23, 2013 at 8:24 pm EDT
Congratulations Damon for not only discovering a 99% effective protection against contracting HIV while enjoying bareback sex, but also for managing to take advantage of a widely-viewed forum to convey this astounding message to those of us who are deeply and passionately condom haters! Your interview is just amazing, truly uplifting, and empowers those of us who have been unwilling to forfeit the profoundly passionate, incomparably sensitive and rapturously intimate joy of skin-on-skin intercourse to also take hope that we can now depend upon having the same degree of protection as those who shroud their manhood in a plastic burkha. The advice and information you present is welcome and valuable and as someone who rarely clicks to start a video interview I must admit that I actually expected another downer report intended to strike guilt and fear in those of us who, from years of fighting the battle, have become inured to those warnings.

One of the points you mentioned which particularly captured my attention was when you mentioned the subset of men in their 50s who think “…at this point in my life I’m going to die from something else, so why not, who cares about HIV.” I happen to be someone approaching that age and it had never entered my head that my 50s, or even my 60s, would be the time to throw in the towel. Who are these guys? It sounds like they’re suffering from Major Depression—which can also be alleviated by an oral medication.

Anyway, just let me say that it seems we’re finally reaching the point, as a community, where we can appreciate and respect one another whatever their personal choices may entail. I know I’ve been lucky depending on the word of my partners to protect me during raw sex (especially since I’m a bottom). Now though I won’t even need to “pop the question” but instead just “pop the pill.” Awesome!

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Replies to this comment:
Comment by: Damon L. Jacobs (New York) Mon., Aug. 5, 2013 at 5:29 pm EDT
Thank you Joshua! I appreciate your words. Although there is a pattern for some men in their 50s to give up condom use (without PrEP), I caution people from assuming it is a symptom of Major Depressive Disorder. We generally don't question the mental state of straight men who choose not use condoms. I'd say a lot of the times it simply "condom fatigue."

BTw - I'm from Culver City!

Thank you commenting... Damon


Comment by: Bob Skinner (Corvallis Oregon) Tue., Jul. 23, 2013 at 6:27 pm EDT
Bravo Damon, Thanks so much for reporting on this. As an HIV/AIDS educator I am frequently asked about this and how I feel about condom vs. a pill. At first I though it was just a way that the medical community was just using as a way to fill in the gaps of somewhat failed prevention messages. I know better now. As we now know PrEp can be very effective if taken correctly just like other ARV treatment. Thanks for getting me excited about this and keep up the good work !
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Comment by: J. Silverstein (Chicago) Fri., Jul. 12, 2013 at 2:15 pm EDT
I find this article "very" interesting. However, I do have a couple wee comments...
Aids/HIV is obviously a global issue to us all on this planet(republicans) not included. Sorry, mate just a bit of tongue and cheek! Right, back to my point. Many of my straight mates are every bit as... free with love as "WE" are, therefore shouldn't this article focus on what the drug can and would do for both gay and straight individuals? Its simply daft to mention the "party" components of this drug when compared to its obvious life saving upside. People will abuse it or rather use it for other issues whether there is actual education about its proper use or not. Before, I get flamed by some clever sod let me address the 800lbs elephant in the room...Yes, if we all were 100% monogamous there wouldn't be as big of a need to adhere to this drugs proper use now would there? But, "WE" all are people with feelings and needs whether "gay or straight". Ignoring one's emotional/physical needs is just folly and not at all living in reality. If I was doing the PR for PreP I'd try to appeal to "ALL" people not just us brilliant gays. Aids/HIV after all doesn't give one single toss about who we humans fancy having a shag with--now does it? Loved your piece mate;-)! Cheers.
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Comment by: Damon L. Jacobs (New York) Mon., Aug. 5, 2013 at 5:39 pm EDT
Hi J. Silverstein

-- Love your accent!

You are absolutely correct in asserting that PrEP education and information would ideally be targeted to EVERYONE who could be at risk. At the same time, 78% of new HIV infection rates in the U.S. are still occurring through M2M contacts. I would love to see women getting on board with this as a health issue.



Comment by: n. van der bergh (South Africa) Sun., Jun. 2, 2013 at 4:23 pm EDT
Dear Damon,

When you decided to utilise PrEP, was it only Truvada or Truvada and condoms?
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Replies to this comment:
Comment by: Damon L. Jacobs (New York ) Mon., Jun. 3, 2013 at 4:17 pm EDT
Hi N. Van Der Bergh -- I have used both, depending on partner's preferences. Some people still prefer using condoms, and that is fine. Truvada is "A" strategy for prevention, not "THE" strategy. It is one of many tools, which includes condoms.


Comment by: Tom (Orlando) Wed., May. 29, 2013 at 5:06 pm EDT
Will you stop demonizing the AHF? The ONLY application for this pill is for recreational, and Weinstein deserves kudos for being the only person in the HIV community who said so and is still standing. PrEP is not going to stop the spread of HIV, it's not going to limit stigma, and it's sure as heck not going to make things better for anyone except the party crowd. The nonstop advertisement for a recreational drug on supposed educational sites has got to stop. It's a public health disaster waiting to happen, and everyone knows. Give it a rest, the entire world is rolling it's eyes.
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Replies to this comment:
Comment by: Damon L. Jacobs (New York) Sun., Jun. 2, 2013 at 12:13 am EDT
Hi Tom,

I, for one, do not demonize the AHF. PrEP is not only used to enhance intimacy, but it is also being used as a prevention strategy by individuals in violent relationships who cannot (for various reasons) leave. It is also being used by sex workers to reduce safety risks. These groups may not be as public as I have, but one could reasonably say their use goes beyond "recreational."

PrEP is not going to stop the spread of HIV, but used effectively it could sure slow it down. We haven't seen any significant drops in new HIV infections in the U.S. for the past decade. PrEP could change that if it was widely known about and available.

In a sex negative paradigm, risk reduction and protection will always be a source of stigma and shame. Women have been dealing with this for decades in regard to having accessible birth control and abortion rights. We can all learn a lot about from Feminism about how to stand up for rights to express oneself sexually with a partner - even under the threat of misogyny and hate.


Comment by: Joel (Houston, TX) Tue., May. 28, 2013 at 10:21 pm EDT
Damon, thank you for telling your story. One of the saddest parts of this epidemic (besides the millions that have died and the fact that it didn't have to happen) is the cruelty and discrimination in our own community. As someone who is educated and who does not consider status when deciding who to date and who to love, I think the truth about this drug must finally be told. But it cannot be told without telling the story AHF and Michael Weinstein, who railed against the makers of Truvada and said that it would be a bareback festival, if approved. That did NOT happen, according to studies and the drug has proven very effective. Thanks again, Damon. Maybe our community can stop acting like Rick Santorum when it comes to people living with HIV/AIDS.
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Replies to this comment:
Comment by: Damon L. Jacobs (New York) Sun., Jun. 2, 2013 at 12:06 am EDT
Thank you Joel!! With ya 1000% !!


Comment by: WH (Hartford, CT) Sun., May. 26, 2013 at 6:42 pm EDT
What you don't mention is who is paying the expensive cost of this drug? I doubt any insurance coverage would cover something deemed "preventative" in this set of circumstances. By not disclosing that financial reality the article is incomplete.

Hiv+/Undetectable and 6 years strong on Truvada/Kaletra regimen. I know the issue of viral resistance - my initial diagnosis and viral analysis indicated I was one of the "lucky" that got the double whammy - diagnosis and the 25% that are infected with a resistant strain, most likely due to non-adherence by a patient on meds.
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Replies to this comment:
Comment by: prep taking in community (anywhere?) Wed., May. 29, 2013 at 11:27 am EDT
hi there, he talks on the first and second pps of the article about insurance companies. that looks like his insurance pays for it. my insurance pays as my doc prescribes as i am a person at risk.
Comment by: Damon L. Jacobs (New York) Sun., Jun. 2, 2013 at 12:05 am EDT
Hi WH - As of yet, no one that I know has been denied access to the drug through their insurance. In New York, the state Medicaid system now pays for it due to the efficacy. My understanding is that Medicaid is paying in other states, but not making a public pronouncement about it. Gilead has pledged to make it available through their Assistance Program for those with no means. One person I know has received it that way as well.


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