Joel - "I was still scared, but something funny happened..."

Here I am taking PrEP on a daily basis. I will admit I have become more open to sex without condoms. My fears still linger and I am trying to work through them.

I have been diagnosed with STIs. When I was using condoms consistently that was never the case.

But I am HIV free.

via Joel Alcaraz

Seattle, WA
Twitter: @joelalcaraz92

It’s been one year since I have started taking the FDA approved pill called Truvada for HIV prevention. The only sanctioned medicine (aka PrEP or pre-exposure prophylaxis) that prevents HIV infection, Not even condoms are approved by the FDA to prevent HIV.

Thoughts so far?

I have not been infected or diagnosed with HIV. I take cyclical STI exams with my doctor. Because of my paranoia I go every month and a half.

When I started to accept that I liked men at 16, I also acquired a deep sense of fear over HIV. Any sexual interaction was meet with condom inspections after intercourse. I was “safe” 100% of the time. Condom usage if done correctly is between 70-97% effective in preventing infection. Those numbers constantly created anxiety. I’d be anxious about the previous night’s blow job and run to my local HIV testing center when class was over.

Men who were HIV positive, I’d shun and turn away. My fear was so deep I could barely kiss them without thinking about the terrorist virus within their bodies.

I was scared of them. I didn’t want to become them, but my thoughts haunted me, chanting “not positive yet.”

Into my Junior year, a guy I dated cheated on me. Usually I have condom-less sex with men I trusted, recently tested, and who I thought I might have a future with. He admitted one night he had been sleeping bareback with his ex while we were dating. I freaked out, locked myself in the bathroom and pictured a soon to be death sentence announced by a drop of blood.

I called the emergency line at my school’s mental help hotline. I was having an anxiety attack locked up in a dorm bathroom. The man on the line managed to calm me down and told me to explain the situation to my doctor the next morning. What had passed had passed.

The next day I told my doctor about the situation and collected samples of my bodily fluids. He also told me about PEP (post-exposure prophylaxis), a course of HIV meds taken for a month after a potential exposure that could prevent me from acquiring HIV if taken within a 72 hour window period after exposure. He gave me the prescription and sent me away. My results came back negative.

The next two years I took PEP three times. Once, with a stranger where there was a condom break. Twice with my ex, my intimacy only seemed to spur paranoia. I am sexually active, my numbers are pretty high. I crave the flesh of another man, but fear is high. I enjoyed sex without condoms, but the thought of HIV always deterred me and sent me into an anxiety driven state.

So I continued educating myself about HIV. Read studies about this new prevention strategy called PrEP. If there was a post-exposure medication, what about pre-exposure? I discussed it with my doctor and he managed to get it approved for me considering the amount of accidents I had reported to him.

The perfect time too, since I had just broken up with my ex, and I knew my behavior would be more promiscuous considering my alcohol induced sexual splurges to help qualm the pain.

For nearly a month I had bowel issues. Not a great start, but it did help quell anxiety. If taken every day there was a very high chance (upwards of 90%) I would not be infected with HIV, and that was if the other person was POZ had a detectable viral load. If they were undetectable the chances were less than one percent. So I dated a man who was HIV positive, undetectable. We had sex, without condoms, and it was terrifying. He assured me I would be okay, he was very well acquainted with the drug and knew members of the community who were experts on the matter.

But it was hard to be intimate with him. I was still scared, but something funny happened.

I began to see him less as a bogey man, and more of a human being. He had HIV, but he was perfectly healthy. Just like me he took one pill a day. Essentially I was living his life, but taking a pill to prevent the virus from attaching itself to me. While he was taking it to keep viral loads levels low. Every morning before work, we would both take the pill and head off.

I still deal with my fear of HIV, but I don’t see it as a death sentence anymore. I’ve become more open to the idea of dating POZ men. From time to time I still cringe at the idea the pill might be a farce, a conspiracy to infect gay men with false hope. People on hookup apps call me a Truvada whore whenever I put I am on PrEP. Oftentimes, they are HIV+ themselves.

There lies the root of the problem, shame. The same people in our community have issues with the morality of the pill. Just as the right has issues with birth control and the HPV vaccine. It will only promote more whoredom they say. Men who said they were not at risk, contracted it, now spout the “condoms only” argument.

Deep down I was ashamed of pleasure. The pleasure of another man, flesh to flesh. Intimacy issues ensnared into bodily behaviors.

Yet, I was still going about my business sleeping around. The fear of HIV lies in the fear of another stigma, a deserved stigma by the larger sect of society on gay men. The zeitgeist being a just punishment for their immoral behavior. It was only a matter of when. I was still ashamed of being gay and liking men. That’s where my fear manifested from, I was ashamed of being gay and feared I deserved to contract HIV and die.

But here I am taking PrEP on a daily basis. I will admit I have become more open to sex without condoms. My fears still linger and I am trying to work through them. I have been diagnosed with STIs. When I was using condoms consistently that was never the case. But I am HIV free. Gonorrhea and Chlamydia are treatable, and you can still get them even if you use condoms for anal sex, oral sex is where they get you!

Hopefully in my lifetime there will be a vaccine for HIV. Until then this is the next best thing, a once a day pill. Even if you use condoms all the time, there will be slip ups, God knows I never planned for one. You fall for someone and trust them and have unprotected sex. Boom, you’re infected that is how my ex who is HIV+ contracted it. Statistically most HIV infections occur from people you know and trust.

Humans are emotional animals, they seek pleasure and sometimes in the heat of the moment we don’t make intelligent decisions. Taking PreP has not only prevented me from getting an infection, but it has humanized those who do have it.

I doubt I would ever have had sex with a POZ man before PrEP. It’s actually safer, considering men who say they are negative oftentimes don’t know their status and their viral levels are dangerously high. While POZ men who know their status and are on treatment can have undetectable levels.

You always roll the dice when you hook up or date someone. If someone infected you one day, and the next week you went to the doctor for a check up it would likely not show up in your results.

So go and get yourself checked, ask about PrEP and see if it’s right for you. Or at the very least have a PEP kit available in case an accident occurs. Protect yourself, its time to be an AIDS free generation. If you have any questions, comments, or concerns regarding PrEP I am happy to answer and regale you with my own perspective.

Cheers. And Happy Pride!

[If you want to connect with Joel, find him on Twitter @joelalcaraz92]

"PrEP is my wake up call to a reality that I need to protect myself and stop putting my life in others' hands."

via Christopher Wilson

Rochester, NY

On August 18, 2014, I posted, “I chose to begin taking pre-exposure prophylaxis, or PrEP, as another way to take back control of my life. As a man of color who is also same-gender-loving the odds are against me in quite a few ways. Instead of allowing the world to get me, I’m taking a stand with my health.” Well it is almost a year later and I am still taking PrEP but my reasons have changed slightly.

Read the rest of the story on Christopher's blog.

And thanks Christopher for sharing your story with My PrEP Experience, and the world! Personal experiences and testimonials from people using PrEP - like you - are so powerful and help many, many other people clarify their own decisions around sexual health and wellness, whether PrEP is their choice or not.

Michael - Out of pocket PrEP costs "well worth the added protection and peace of mind."

I wanted the extra layer of protection and the clinic was very supportive and cooperative about the process.

via Michael
Charlotte, North Carolina

I am a semi-retired 60 + gay male and part time CMT and CYT 200 Yoga Teacher and a first time PrEP Truvada user.

I am in a committed long term marriage to my husband of 17 years. He recently converted to HIV+ and after long and careful counseling with our agency here in the greater Charlotte area (actually Rock Hill, SC ) Catawba Care I became only their second patient to go on Truvada.

My husband takes Atripla every day and is undetectable but I wanted the extra layer of protection and the clinic was very supportive and cooperative about the process. I have Blue Cross Blue Shield thanks to the ACA and with the Gilead co-pay assistance program my out of pocket costs are approx. $130.00 a month --- well worth the added protection and peace of mind.

It has allowed my husband and I to return to a more secure sex life with the added protection Truvada brings. I have had NO negative health effects after 3 weeks and will continue to be regularly tested by our clinic.

I hope this brief information will help anyone considering going on a PrEP routine.

Gay Couple Don't Take "No" for an Answer and Successfully Appeal Insurance Denial for PrEP

[Moral of the Story - Don't Take "No" for an Answer]

by Brandon and Shane
Burlingame, California

My name is Brandon and my husband name is Shane. We are both negative and decided to go on Truvada as PrEP. 

We went to our primary care physician, he talked to us about taking it, side effects, the tests we’d need to take prior to taking Truvada. We did a HIV test as well as a full STD screening, after which he wrote us a prescription for Truvada. We went to the pharmacy (Walgreens) and were told that we would need to get a pre-authorization from our insurance company (Catamaran, our prescription benefit company). I called my primary care physician who filled out the paperwork and sent it back to the insurance company.

 After several weeks we heard back from our insurance company via a letter in the mail stating that we were denied "the Dr prescribing the Truvada must be an HIV specialist” (see below.) We appealed their decision, of course.

In deciding to start Truvada we had done a little bit of online research into taking the drug and we were prepared for the “pre-authorization” but were not prepared to be denied for lack of an “HIV specialist. We had previously used the My PrEP Experience blog as a resource, so we emailed them and Jim Pickett answered and offered us some quick advice including a link to the CDC Prep guideline document to help us with our appeal.

We took that information along with data we found from the FDA ("FDA approves first drug for reducing the risk of sexually acquired HIV infection") and the information pamphlet “PrEP Facts” from the San Francisco AIDS Foundation, as well as Catmaran’s own public list of “approved drugs” which Truvada was one.

The text of our appeal letter to our insurance company is below.

Approximately 2 weeks later we received a call from Catamaran informing us that we had been approved for an initial period of 12 months.

Cheers
Brandon and Shane

Appeal Letter to Catamaran Prescription Benefit  

January 4, 2015
Catamaran
Attn: Catamaran Appeals Department
P.O. Box 371544
Las Vegas, NV 89134 

Dear Catamaran Appeals Department 

I’m writing to lodge an official appeal to the denial of claim #: 0000, a prescription for Truvada Tab 200-300. 

I desire to take Truvada as a PrEP as I am currently an HIV negative actively sexual gay man, and I wish to stay that way. Obviously condoms should be used at every sexual encounter but as a human I make mistakes. PrEP would be there to help when I make that kind of mistake. 

According to the publicly available “2014 Catamaran National Formulary Reference Guide - List of covered drugs” Truvada is listed as a “PREFERRED Antiviral” with no additional proviso of “when it is prescribed by or in consultation with a HIV expert” as stated in the letter of denial. There is no current CDC, FDA, nor US Public Health Service requirement for Truvada as PrEP to be prescribed by an HIV expert, if this is a Catamaran specific policy, I urge you to please reconsider that policy. 

My PCP, Dr XXXX XXXXX, while not a HIV specialist, has been practicing medicine for 24 years. He is a highly respected and qualified Doctor. He has reviewed the recommended REMS program for Truvada as Prep as outlined by the FDA and Gilead with me. (http://www.truvadapreprems.com/#) and the recommended pre-screening HIV and STD tests have been completed with negative results. 

As I am HIV negative and do not have AIDS/HIV+, I am not currently under the care of an “HIV expert” nor should I be. They should be dedicating their resources to their patients that need them. As I’ve referenced below the CDC, the FDA, and the US Public Health Service all state that Truvada as PrEP should be taken by sexually active adults at increased risk to HIV exposure… which I am. 

The FDA approved the use of Truvada as PrEP in July 2012 and stated that “As part of PrEP, HIV-uninfected individuals who are at high risk will take Truvada daily to lower their chances of becoming infected with HIV should they be exposed to the virus.”

In the enclosed CDC document "PREEXPOSURE PROPHYLAXIS FOR THE PREVENTION OF HIV INFECTION IN THE UNITED STATES - 2014” the CDC states “On the basis of these trial results and the FDA approval, the U.S. Public Health Service recommends that clinicians evaluate their male and female patients who are sexually active or who are injecting illicit drugs and consider offering PrEP as one prevention option to those whose sexual or injection behaviors and epidemiologic context place them at substantial risk of acquiring HIV infection.” 

Please give me the opportunity decrease my risk of exposure to HIV, help me do my small part in stopping the spread of HIV/AIDS. Reconsider my desire, my Doctor’s desire, and the FDA and CDC’s recommendation that people like me take Truvada as PrEP and approve my request/Dr prescription for Truvada. 

Sincerely yours,

VIDEO: SF Gay-mer Jeremy on why he's on PrEP

I don't think being on PrEP means I'm going to go out and fuck every single person in the world.... Maybe I will, maybe I won't. I don't know.

via Jeremy, San Francisco
[who sent us this lovely post and video a few weeks ago - thanks for sharing Jeremy!]

I posted this to a Facebook page dedicated to PrEP facts and experiences and thought I would share with your blog.

After journeying through ill-spoken insurance verbiage to get on PrEP (and after doing extensive research) I was finally able to cut through all of the wrong information to find out that PrEP would be covered and would not be as expensive as I was originally told.

 I live in San Francisco but am originally from a small town in the Central Valley and when trying to discuss PrEP with folks there (in particular a cousin in a mixed status relationship) I have found it to be daunting and almost fruitless. I came to the realization that the folks I was discussing it with were, in essence, afraid of information and facts; throw too many numbers their way and they begin to get intimidated.

Admittedly, conversations about HIV and sexual wellness here in the city are far easier to have. So I thought I would document my PrEP journey as an every-man (which I am) during milestones.

Today I hit my 7th day on PrEP which for most is the day where Truvada is working at maximum efficacy.

So here's my video! -=O)

Bill's "Pretty Epic" PrEP Experience

So, I heard about this PrEP thing on a few websites, did some research, and thought 'Damn, gurl, this is right for me.'

All kidding aside, I am very troubled by this long and cumbersome multi-step process. It should not be this hard to get PrEP. I am a 43 year-old professional and have the fortitude to push through the red tape.But I can assure you I would not done all of this when I was in my late teens or early twenties.

by Bill
Portland, Oregon

Hello. I've been on PrEP now for 2 months and thought I would share with folks what I had to go through to get my prescription from Kaiser here in Portlandia (Oregon). It was pretty epic.

So, I heard about this PrEP thing on a few websites, did some research, and thought “Damn, gurl, this is right for me.” I went to my primary care doctor which, as fellow Kaiser members know, is S.O.P. for getting anything at Kaiser including a band aid. I don’t know my primary care doc too well (because I am generally healthy and don’t go to the doctor very often), but he seems like a pretty cool guy.

He listened and basically agreed that the medicine was right for me. But when he went to the Kaiser Computer System (aka “Hal”), he was not allowed to prescribe it to me, despite his best efforts. He said Kaiser protocols required that he refer me to an Infectious Disease doctor even though I had no infectious disease. (As an aside, I am somewhat baffled that my primary doc cannot prescribe Truvada, but he is allowed to prescribe powerful opiates and other really fun controlled substances).

Anyway, my primary doc referred me to the Kaiser IDI clinic and that’s when the real fun began. After setting my appointment with an IDI doc (which was 2 weeks out), I received a call from the IDI doc’s assistant telling me I needed to fill out a questionnaire before meeting with the IDI doc. Fine, I said, e-mail it to me.

The questionnaire required me to reveal lots of details about my fairly active sex life. How many times have I had sex in the last year? In the last 2 months? Do I sleep with dudes, ladies, or both? How often do I use condoms when I have sex? Do I do drugs? What do I think of the crisis in the Ukraine? I dutifully completed the questionnaire and sent it off to the IDI people for their consideration and entertainment.

Having jumped through the questionnaire hoop, the next step in My PrEP saga was to meet with the IDI doc. I guess the questionnaire wasn’t enough, so she asked me some more questions. Am I in a relationship? Do I want to be? Do I just meet guys for sex? Where do I meet guys (online, bars, etc.)? Have I ever had any STD? If so, what was it? When was I last tested for HIV? Am I a top or bottom?

If you want to know the answer to the last question send me a private message or find me on Scruff.

The IDI doc told me that I would have to be tested for HIV, gonorrhea, syphilis, hepatitis, and boy cooties. That all made sense. She also said they would test me for something called the CCR5 deletion gene which is that gene mutation that a small percentage of people have that makes them essentially immune from HIV, even if they are really, really, really slutty. I suspect their reasoning is that there would be no reason for me to be on Truvada (which, as the IDI doc pointed out to me several times, is very expensive) if I have some sort of natural HIV immunity. (Turns out I have one copy of the CCR5 gene which means I have “heightened protection against HIV,” but not immunity. That requires two copies of the gene).

Now, after all this, I honestly thought I was going to leave my appointment with the IDI doc with a prescription for PrEP (pending the results of my blood work). Boy, was I wrong.

IDI doc told me that Kaiser policy is to take requests for PrEP to a Committee of IDI docs for a vote. This Committee (which, I have confirmed, is not the same as the Obamacare Death Panels) meets once each month. Their next meeting was two weeks away. My IDI doc said she would advocate that I be on PrEP. I love her.

Interestingly, she also told me that I was only the third person in the entire Kaiser System in Oregon (which is actually pretty large) who had requested PrEP. She also said the other two had been turned down, including a fellow who was in a serodiscordant relationship with an HIV+ partner. After I looked up “serodiscordant” on my iPhone dictionary, I was quite shocked at this. I mean, of all the people who want PrEP, shouldn’t the HIV neg guy who is regularly having sex with a POZ guy be close to the top of the list? But I guess it’s none of my business.

My blood test results came back. HIV neg and no STDs. Yippee! Also, I was informed that the Committee approved my request for PrEP. So the stage was set and I picked up my one-month supply at the Kaiser IDI pharmacy, not that regular Kaiser pharmacy (that would be too easy). When it came time to refill my prescription, I had to have a another appointment with the IDI doc (by phone). Among other things, she asked if I had had any “risky” encounters which I understood to mean condom-less sex. Part of me wanted to say no, because I am on PrEP which makes them not “risky.” But I refrained and gave her the lascivious details she wanted. I then went through another round of blood tests and was approved for a three-month supply.

All kidding aside, I am very troubled by this long and cumbersome multi-step process. It should not be this hard to get PrEP. I am a 43 year-old professional and have the fortitude to push through the red tape. But I can assure you I would not done all of this when I was in my late teens or early twenties. I suspect that is still true of many young men and women today. That is unfortunate because these are the people who need access to this drug the most. As we all have heard, HIV infection rates are increasing among gay men who are 16-25 years-old.

I hope Kaiser changes its process for prescribing PrEP. I understand the need for the preliminary and routine blood work and on-going counseling about the extreme importance of taking it daily. But there is no reason that can’t be done by primary care physicians who often are the ones that know a patient best.

PrEPed in Japan

I have had no side effects at all, except feelings of reassurance and security!

I am just angry and frustrated that I didn't know about PrEP earlier and that it is not being promoted in countries like Japan or my home country (which promotes condoms only). I am angry because I believe I could have convinced my boyfriend to go on it and could have protected him from infection via PrEP.

by Anonymous in Tokyo

I recently self-initiated PrEP in Japan (using Truvada generic Tenvir-EM by Cipla), and I wanted to share my experience for anyone outside the U.S. who may face similar issues.

My Japanese boyfriend contracted HIV earlier this year. We found out after I contracted an STD from him and he tested positive for HIV (while I remained negative). We have been told by health workers that HIV infection rates are increasing significantly in Tokyo (anecdotally among young Japanese who like foreigners/tourists).

I found out about PrEP in the U.S. online but we were told by my boyfriend's doctor that Truvada is not covered for PrEP by Japan's health insurance system. I couldn't afford to pay for Truvada in full, so I decided to buy the Truvada generic Tenvir-EM for about $100 per month via a Japanese online pharmacy (manufactured by Cipla in India).

After several blood tests and my annual health check including kidneys (I will increase the kidney function check to four times a year going forward), I now self test for HIV monthly using the OraQuick oral-swab antibody 20-minute tests, which I buy from Amazon (about four at a time at a cost of $50 each). So the tests and pills cost me $150 per month in total (including shipping) but I think it is worth it.

I have had no side effects at all, except feelings of reassurance and security!

I am just angry and frustrated that I didn't know about PrEP earlier and that it is not being promoted in countries like Japan or my home country (which promotes condoms only). I am angry because I believe I could have convinced my boyfriend to go on it and could have protected him from infection via PrEP.

He is not on any HIV medication yet so we still use condoms when he tops me, but now that I am on PrEP I am more relaxed about things when I top him. The fear has gone and our relationship is stronger than ever, thanks to one small pill a day.

I believe every government and HIV organizations have a moral responsibility to make it as easy and cheap as possible for every gay man on the planet to be on PrEP and stop all new infections in the community. If it works 100 percent of the time for us who take it daily, it should be promoted as the first line of defense against HIV (together with condoms against other STDs).

I aim to let as many people know about PrEP as possible.

Episcopal Priest and CEO of Chicago House Shares His PrEP Experience

I’m not hip enough to tweet, and this is my first experience blogging, but I’m Stan J Sloan, an Episcopal Priest and the CEO of Chicago House, and this is my PrEP experience.

Chicago House was the first provider of AIDS Housing in the Midwest, and I am in my 14th year as CEO. I have heard about PrEP and PEP since they first surfaced, but somehow I didn’t begin my PrEP regimen until about nine months ago.

After the breakup of a five year relationship about two years ago, I have been single and dating. A process that is as charming as you can imagine it being for a 51 year old gay man.

Dating in 2014 is certainly different than it was when I came out as a 21 year old, and so I’m probably pretty normal in being as likely to meet someone decent at a coffee shop (although I don’t drink coffee) or at a black tie…as on an online site.

I figure that finding the right guy is a numbers game, and so I play the numbers until I find him.

I am a gay man who loves monogamy and wants that again in my life, but until then I date with all of the implications of dating. And so in that process it took me over a year post “FDA Approval” of PrEP to think through that, “condoms are great and always work…until that experience where they don’t.”

And when that occurred to me…and when I stopped to think of how lucky I was that I was still negative…and when I stopped to think how I wanted to move that “luck” to “certainty”…I called my doctor and asked about PrEP. And a week later I was on it, fully covered by my insurance.

I have had no side effects at all. And I am more relaxed about sex. And I no longer white knuckle getting my regular HIV tests done.

And I am helping my friends learn about PrEP, and I am working with the staff at Chicago House to see how we can help others learn about PrEP to keep them healthy.

So that is my PrEP experience at a personal level. HOWEVER, at a professional level I would add that the same judgments we received from the Religious Right when we started doing condom campaigns in the 80’s (“you can’t push condoms because you are condoning casual sex, and we should strive for monogamy”) has now resurfaced from WITHIN our community about PrEP (“you can’t encourage PrEP because you will be encouraging barebacking!”). It is maddening. It isn’t our job to dictate what other’s do in their bedrooms.

It is our job to keep people safe and healthy, and PrEP does just that. So what is the problem here?

In the 1980’s Larry Kramer and ACTUP armed us with, “Where’s Your Rage?” to get government, and pharmaceutical companies, and the general public to pay attention to AIDS. It is now 2014, and I would propose that arming ourselves with “When Is It Labeled A Scandal?” that gay men and Trans women have never heard of PrEP and are still seroconverting, and that it is still unaffordable to too many, and there is still only one option available from a pharmaceutical company?

When is it a scandal? I would say that now. It is a scandal now.

And that is the full sum of my first blog, and of My PrEP Experience :)

Now you have a good day!

Bareback + PrEP = Safer Sex

Simple math. Protection from HIV.

Read our short fact sheet on PrEP.

 

[VIDEO] Garland from Chicago on participating in PrEP research

In the video below, Garland from Chicago discusses his participation in the iPrEx Open Label Study and taking Truvada as a way to prevent HIV infection. The iPrEx trial was the first study to show that an antiretroviral drug (ARV) - normally used to treat people living with HIV - could also be used to prevent HIV among people who are HIV-negative.

In July of 2012, the FDA approved the ARV drug Truvada for the prevention of HIV.

Thanks to the iPrEx team, My PrEP Experience will be sharing a number of videos from iPrEx study participants over the coming days and weeks. Check back often, or like our partner Project RSP! on FB and follow along with all the new videos that way.

If YOU are taking Truvada as PrEP, we'd love to hear your story. You can share your experience in a video, or you can write something up. Whatever you want to do - we want to hear your experience - whether taking Truvada as PrEP was a good experience or a bad experience - or anywhere in between. Email myprepexperience@gmail.com and let us know!
 

He protects me. So does PrEP.

Learn more about PrEP right on this page - check out the info links to the right, and scroll down to read personal stories from folks using PrEP. Learn from them.

Read our short fact sheet.

Click here for a CDC brochure to help you prepare for talking to your doctor about PrEP.

The CDC recently released PrEP guidance for clinicians. Click here. And let your medical provider know about this document (they may not.)

Share this page with boyfriends, hook ups, friends, strangers, people at the table next to you....

Power Bottoms Activate!

This is a BIG deal.

PrEP is the first HIV prevention tool controlled by the bottom/receptive partner. No negotiation needed.

Learn more about PrEP right on this page - check out the info links to the right, and scroll down to read personal stories from folks using PrEP. Learn from them. Read our short fact sheet.

Click here for a CDC brochure to help you prepare for talking to your doctor about PrEP.

The CDC recently released PrEP guidance for clinicians. Click here. And let your medical provider know about this really important document (they may not.)

Please share this link with people who may be interested.

[VIDEO] Alejandro, his POZ partner, and using PrEP

[Video courtesy of Project Inform]

Alejandro has been with his partner for several years. They're a mixed status couple ... Alejandro is  HIV-negative, and his partner is positive. Here, Alejandro describes some of the things he and his partner thought about when they were deciding whether or not to use PrEP.



Project Inform is a great resource for info on PrEP. Click here.
 

John - "I feel more in control of my prophylactic decisions than I ever have before"

Not preaching or trying to convince anyone, just thought I'd share my PrEP story...

via John Sewell
Seattle, WA

I'm 46, which means I became a teenager the year we first got news of the "gay plague." I went to a military college, then spent 5 years in the Navy following that. I had a very few, discreet sexual encounters during those years, but mostly shied away because: 1) being gay was not socially acceptable, 2) I would have been kicked out of the Navy in disgrace if I had been called out, and 3) there was a mysterious killer affecting gay men with not much information about how it was transmitted or controlled.

Fast forward to 3 years ago.

I found myself head over heals in love with a man who was HIV+.

I had been infatuated with a few HIV+ men over the years, but had never before had to consciously decide if I wanted to be in an ongoing relationship with one. Love won out, and I made an agreement with myself that I'd be okay with a life of continued, consistent condom usage with this man. (I had been in the habit of regular condom usage until a monogamous partner and I had been together for six months, at which point I switched to condomless sex paired with continued regular testing.) At the time my boyfriend and I met, he was positive, but not yet on ART (as per CDC guidelines and his doctor's advice at the time.)

A year later, the CDC changed their recommendation on when to start ART. My boyfriend, on the advice of his doctor, started taking Atripla and, within 3 months, had an undetectable viral load. Once he reached that point, he and I stopped using condoms with each other. A year or so after that, I started on Truvada.

We are not monogamous, and I myself have enjoyed going to bath houses in the past and currently.

I get tested almost monthly as the result of a PrEP study and an HIV vaccine study I participate in. This winter, I tested positive for gonorrhea. This was the first time I'd ever tested positive for an STI. I was treated immediately and followed the advice of the STI clinic in regards to notification and temporary abstinence. Because I had discussed this possibility in advance with my partner and health care providers, it did not shock me or destroy my ego. I felt equanimity about it.

Where am I at mentally today?

I feel good about my choices regarding my sexual, mental and social health (if I can be so bold as to make those three categorizations). I feel more in control of my prophylactic decisions than I ever have before.

I think I've done a reasonable, informed job of preventing myself from becoming infected with HIV, but I'm also not afraid that my life will end if I do become infected. That's a welcome change! I would like to avoid other STI's, but I also understand that I should balance that with finding joy and pleasure in life, not hiding in the closet.

I'm sure not everyone would agree with my approach. I know there are both individual conscience and community responsibility angles to this discussion which are complex and sensitive. I'm happy with my current choices, and I continue to try to remain both well informed and open to modifying my strategy as we learn more about both HIV, other STIs and gay health in general.

Rico - "Judge me if you want and call me a Truvada whore, I don't care"

by Rico
West Palm Beach, Florida

I have been on Travada for 4 months now. My primary care giver who is gay and have been going to for 30 years didn't know about PrEP which shocked me. He then referred me to an infectious disease specialist who shook her finger at me about condoms and the need for them.

I just looked at her and said "I'm 54 years old and HIV negative and I'm here for the drug, are you going to fucking give it to me?" 

There seems to be a never ending need to cling to the past, one which I might add is not working so well for the "old school" weather it's straight or gay, the infection rates continue to climb.

I'm thrilled I met someone on a hookup in NYC who talked to me about it which started my journey to get on it. Since being on the drug I talk to everyone about it, judge me if you want and call me a Truvada whore, I don't care.

The only side effect I have experienced were dreams and they have faded over the months. Other than that, nothing.

Happy in Florida.
Rico

That's What He Said Part 2 - Jody's Persistence (and Community Support) Pays Off

Click here for Part 1.

“Come in and see me. Tell me more and let’s get this fixed,” he said....

...While my experience with Doctor Nameless wasn’t ideal, it was eye-opening. If it had to happen to someone, I’m glad that was someone who had the tools, resources, and voice to find a better solution and seek a change.

by Jody Wheeler*

When I say “bitch” I didn’t mean randomly. Facebook is mostly just cat pictures, traffic complaints and filtered selfies, after all. Noise not signal.

Yet there are some great groups on Facebook, pages on a wide variety of issues, run by people who interested in sharing information, providing support, and making things better. PrEP Facts: Rethinking HIV Prevention and Sex, is one of those Facebook groups.

PrEP Facts was started by Damon Jacobs, a therapist and PrEP activist from New York City. I’d found his group it while researching PrEP and Truvada. While often raucous and combative, that energy comes from its passionate membership — doctors, educators, epidemiologists, regular folk — deeply committed to getting the word out about PrEP. Information, resources, and support are all to be found there. I knew I needed to post there.

On-line, I recounted a (far briefer) version of my visit with Doctor Nameless. At the end of my tale, Iasked the group for both help in finding a better doctor and more information on bone-density loss, the one aspect of my recent craziness I wasn’t up on. I didn’t give Doctor Nameless’ real name out in the public forum. His medical group — UCLA Health — that I eventually stated.

In spite of my experience, I wasn’t looking to start an internet pogrom of torches and angry villagers against the man. It was important to get the facts out, to find out if what I went through was a common experience, but not to lambast someone by name, just as an example. I did decide that, on a case by case basis, if appropriate, I would disclose his name.

The response from the PrEP facts group was overwhelmingly affirmative. Not just posts that commiserated with me, but actual, hands down great advice and recommendations. The names of good doctors from across the city poured in. Some people even recommended I fly to their city to see their doctor or go to the clinic they worked at. It wasn’t lost on me that was something I might be able to swing, but what about all those other folks that couldn’t?

The thing that most surprised me were the numbers of folks who told me that Doctor Nameless’ response was unethical, bordering on malpractice.

I hadn’t thought about it in those terms. Annoying? Sure. Maddening, no doubt. Bang-off-the-walls-and-jump-in-a-lake-of-ice-cubes? It felt that way. But the ethical or malpractice suggestion gave me pause.

The American Medical Association says that, as patients, we have the:

“…. right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives. Patients should receive guidance from their physicians as to the optimal course of action…The patient has the right to courtesy, respect, dignity, responsiveness, and timely attention to his or her needs.”

which translated as requiring patients to receive correct information, to treat our concerns as real, and not to have a physician substitute their values for our own. For mine.

Another group member compared what happened to what some women have experienced from certain doctors and pharmacists when they ask to go on the Pill. While I’m still not convinced Doctor Nameless engaged in malpractice, in light of that comparison and the AMA’s standards, I don’t think what happened was all that ethical.

The most surprising thing that happened as a result of my post was that another physician from UCLA Health reached out and got in contact with me, Dr. Raphael Landovitz. Landovitz is a researcher and practitioner, the co-director also Co-Director of the UCLA CARE clinic, which is specifically devoted to the care and prevention of HIV. He’s also been at the forefront of implementing PrEP across Los Angeles.

That's What He Said - Part 1

What had begun as a promising visit to the doctor to begin PrEP, the most revolutionary advance in HIV prevention in decades, had instead become a misadventure into ignorance, idiocy, and irritation.

by Jody Wheeler*
Los Angeles, CA

As the elevator dinged downward, my headache ripped free the sides of my skull, pounded the torn pieces into a fine mist, and set to work violently assaulting the naked nerves.

Things hadn’t gone well.

Not at all.

What had begun as a promising visit to the doctor to begin PrEP, the most revolutionary advance in HIV prevention in decades, had instead become a misadventure into ignorance, idiocy, and irritation. The first two of those belonged to my doctor. The last, as my pounding head attested, me.

Picture for a moment a 40-something white guy, a poster-child for education, a beneficiary of cultural privilege, a fortunate freelancer taking advantage of newly affordable health care (Thanks, Obama!), visiting a doctor for, among other things, PrEP. Picture me. Picture me dashing. I like dashing. Dashing is a good, charismatic word. Picture me stunning if you like. That works to. No complaints.

Anyway. I sat in a brightly lit medical exam room, paper-wrapped table in front of me, ample selection of children’s toys near me (the office had a thriving pediatrics practice) an uncomfortable wire backed chair under me, and a friendly-faced doctor beside me. “Doctor Nameless,” as I shall refer to him, as “Anger Inducing Ignoramus” is too long to repeatedly write of this essay. He’d been typing notes of my visit into his handy medical records terminal.

“Anything else for this visit?” he asked with a smile.

“I’d like to go on PrEP,” I said.

His friendly countenance faded, as dark clouds of concern descended across his brow. “What do you know about PrEP?” he said, the storm building with each word.

I rattled off six months of constant reading: PrEP stood for “Pre Exposure Prophylaxis”, where the drug Truvada is taken daily as a preventative against HIV infection; multiple studies have shown consistent and correct use provides a level of protection against HIV equal to or better than condoms; the side effects of Truvada were generally mild to non-existent in healthy individuals, but still needed to be monitored for safety; that most major insurance carriers now covered the drug; and best of all, from an epidemiological standpoint, Truvada protects against HIV even when people miss a dose.

Hoping for a cookie, Doctor Nameless instead gave me an unexpected response: he said neither he nor any other doctor in his practice would prescribe Truvada for PrEP. He stated Truvada’s protection is uncertain and unproven, it destroys the body, and leads to long term and dangerous health consequences.

“In those studies, scientists don’t even know if it was the Truvada or the condoms that provided the protection people keep quoting,” he said with utter seriousness.

Dafuk? went the 12-year old smart-ass who lives in the back of my head. Did you check to see if he’s actually a doctor and didn’t just borrow a coat from someone golfing —

Yes. Shut up and let me talk, I told that 12-year old smart-ass who lives in the back of my head.

“That’s not what the research shows,” I began. I tried not to sound like a know-it-all. I failed. I always fail in these moment. I do try. Researchers had correlated blood serum levels of Truvada with the preventative effect achieved. It was all about the pills, not the condoms. While I wasn’t an expert on biology, the methodology provided in the journals was powerful stuff. “The research is quite robust,” I finished.

My pushback surprised him. I guess patients usually don’t respond with sentences containing “journal articles”, “blood serum levels”, and “methodology.”

He pivoted the conversation and said Truvada would destroy my kidneys. His words echoed as my mouth had fallen open from utter incredulity, thus providing the perfect acoustic shape between my tounge, throat and teeth for his silliness to bounce and fade, bounce and fade.

Get out. Get out now! Run, dude! Runaway! Again, the 12-year old smart ass who lives in the back of my head.

Know-it-all me engaged Doctor Nameless again. I told him there was little evidence of that in HIV negative people. Some research subjects did have their kidneys work harder, but for most of them, that passed. Very few people in the study had to stop treatment because of a risk of damage. In any event, medical guidelines still mandated monitoring for just that possibility.

Again, not what he was expecting, as our conversation veered into a new, oncoming traffic lane of screeching, beeping, destruction: Sexually Transmitted Infections (STIs). “Truvada doesn’t protect against STIs, so it isn’t safer sex,” he said rather definitively.

The headache I mentioned at the top of this essay? This is the exact moment when it started. I remember distinctly. It walked in, said Hey, I’m here. I’ll be your headache for the next few hours. I’m going to start banging around, driving you nuts. I brought friends. I think we’re ordering pizza, too, and got to work causing my head to hurt.

"Today, I no longer need PrEP, but I remain very grateful for it."

by James LoDuca

[James is Vice President, Philanthropy & Public Affairs at San Francisco AIDS Foundation. This was originally published on Huffington Post. Check out SFAF's fantastic PrEPfacts.org - a wonderful resource on PrEP.]

PrEP may not be right for everyone, but everyone deserves the chance to choose.

James, left, pictured with Chris, one of his closest

friends who helped him through his divorce.

Two years ago, something unexpected happened. I was seven years into an incredible relationship. We married in 2008 during the brief window when it was legal for same-sex couples to wed in California, and my husband and I became poster boys for marriage equality (really -- our wedding picture was on a poster). We initiated the process of adopting a child. Never in my life had I been so happy.

Then, suddenly, my husband shared news that I hadn't seen coming: He wanted something different and would be filing for divorce. My world crumbled. The next six months were the most painful of my life. I couldn't sleep, lost my appetite, and went numb inside.

On the outside, I refused to show it. I started dating, went out to bars, and even made some decisions in the heat of the moment that I normally wouldn't. I was determined to convince the world (and myself) that I was fine. In retrospect, it was a fairly common response to intense emotional trauma.

My doctor wasn't fooled. He referred me to a therapist to start the hard work of healing. He also prescribed Truvada, a drug that protects against HIV infection. It's a groundbreaking HIV prevention strategy known as pre-exposure prophylaxis, or PrEP, which has been proven highly effective when taken correctly. PrEP is an especially good option for people during "seasons" of risk, or for anyone who struggles with perfect condom use 100 percent of the time.

AIDS Healthcare Foundation (AHF), the largest U.S. provider of HIV/AIDS services, is spending millions trying to position PrEP as controversial and deny access for people like me. Following a failed attempt to block FDA approval, its current tactic is to demonize the drug and shame its users. On social media, rhetoric from AHF's campaign against PrEP often crops up in posts on the topic. It's strikingly similar to the "controversy" that initially accompanied FDA approval of oral contraception for women. In the early days, single women who sought the pill to prevent pregnancy were labeled "whores."

When it comes to HIV, the idea that condomless sex with PrEP can also be protected sex is novel. As time passes, it will become less so. This isn't the first time AHF has fought progress by taking a position that ignores scientific evidence and sets it apart from the HIV/AIDS community. Some suggest the organization manufactures controversy to keep its name in the headlines and stay relevant.


Progress isn't possible when shame is present. It's time for a more humane and loving approach. We must come together to foster compassionate dialogue grounded in scientific evidence about all of the available options to protect ourselves and take care of each other. That is the only way we will end HIV transmission.

Research has repeatedly linked shame and stigma to the very behaviors that put people at risk in the first place. That was true in the case of my divorce, and as my healing progressed I overcame the shame and stigma that accompanied it. I got an STD during my personal season of risk, which was promptly identified and treated. PrEP doesn't protect against STDs, but it does increase opportunities to identify and treat them, because PrEP requires regular screening.

PrEP may not be right for everyone, but everyone deserves the chance to choose. Nobody should be allowed to take that away. We must work together to educate, empower, and support each other, and beat back dangerous attempts by any person or organization attempting to block access or shut down dialogues. Today, I no longer need PrEP, but I remain very grateful for it. Just like I'm grateful for all the friends and family who provided the unconditional love and support that I needed to help get back on my feet.

There's a sort of beauty in falling apart. When you put back the pieces, you get to build a better version of yourself. In my case, that version did not include HIV infection. I can't help but think that if AHF had its way, PrEP would have never been approved, and my story would be different.


 [EDITOR: If you have a personal PrEP experience you would like to share, send it to myprepexperience@gmail.com. Words or video.] 

[VIDEOS] Ken Almanza Captures the Early Days of His PrEP Experience

Day 4: My PrEP Journey: Truvada hasn't really given me any major trouble so far. My body seems to be tolerating it well.

I just incorporated it with my regular allergy pills I was already taking.

No big change. Stay tuned ...

Ken Almanza does HIV counseling in Los Angeles, and has recently begun taking Truvada as PrEP. He has been documenting his journey with short videos on his FB page - you can see the first three below.

Follow him if you want to  keep up on his PrEP experience. He also posts great info on PrEP as well.

And, he's charming. And guapo. So there's that.

Post by Ken Almanza.

Post by Ken Almanza.

Post by Ken Almanza.

VIDEO: Truvada: The HIV Prevention Pill No One Is Talking About

Fantastic reporting from Fusion TV, featuring a beautiful couple, one of whom does porn on the weekends.

One of our favorite exchanges is towards the end when the reporter asks a random guy in a bar about Truvada as PrEP. He expresses concern that it would make him more promiscuous - "I do feel that if I took PrEP, I would be prone to be more promiscuous- I do." Mitchell counters with, "But you already are promiscuous, so why don't, why not protect yourself?" To which the guy responds - "That's a very good point."