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.

Happy PrEP-Aversary!

Today is the Third Anniversary of the FDA's approval of Truvada for HIV prevention, otherwise known as PrEP.

Happy Birthday!

#yayPrEP!

#PrEPworks!

PrEP involves an HIV-negative person taking a pill every day - called Truvada - to prevent becoming infected with HIV. But PrEP isn't just a pill, it's a program that includes visits with your healthcare provider four times a year, regular HIV and STD screening, ongoing medical monitoring, sexual health counseling and adherence support.

PrEP is revolutionizing safer sex. And you are living in historical, exciting times.

In the past three years, much PrEP progress has been made - more people are aware of PrEP and more people have access to it - in Chicago and across the country. But so much remains to be done. We have to do much better getting PrEP to people who are most vulnerable. We need to dramatically improve awareness and access in the communities where HIV rates remain high - among young gay black men, transgender women, and black cisgender heterosexual women in particular.

We - the collective we - are far from fulfilling the promise and potential of PrEP. And we will only get there -  collectively and collaboratively - through strong, sustained community mobilization, including YOU.

With that said, please share this post and visit us on Facebook - Project RSP - to help get the word out about PrEP. And talk to your friends about PrEP, whether you are taking it yourself or you're a PrEP advocate and ally.

Be sure to check out all the informational links on this blog for everything from fact sheets to financial assistance resources to a Chicago-area PrEP provider listing.



Michael - "Without the constant fear of HIV infection, I can engage in sex with the love of my life."

I take the medication every morning (on an empty stomach – I’m not a breakfast person). And yet, no side effects – except one: I no longer have the deep seated anxiety I would have after a sexual encounter. 

by Michael P.
Westchester County, NY

The theme here is perseverance.



I’m a gay man involved in a very long term relationship with the love of my life (over 20 years together). But, we are not without our difficulties – and being men, and being men who grew up gay in a time when that wasn’t accepted, discussed, or even acknowledged, our stresses often lead to using sex as an outlet – and not necessarily in a healthy way.

The impact of growing up as we did can lead, let’s just say, to difficulties with monogamy.

And, as I believe any honest man – gay or straight – will admit, being ‘safe’ is a difficult, stressful goal. And, even when you are ‘safe’ you always wonder . . . was I safe enough?

The long term stress of that single question can ruin a relationship, take years off your life in worry, and even lead to patently unsafe sexual activity (trust me on that, okay?) And so with all these tensions – further complicated because of the impact (real and imagined) on my relationship with the love of my life – I found myself tracking the development of HIV and AIDS medications over the last 30 years. It was that knowledge that led me to seek out PEP (post-exposure prophylaxis) once, about 7 years ago, after a particularly self-destructive bout of unsafe sexual activity (it is amazing what the confluence of job dissatisfaction, and financial difficulties can lead one to do!)

And so, following the development of new drugs, I learned that that is a medication (Truvada) that can reduce my chances of contracting HIV by better than 90% - ninety percent!?

Are you kidding? Why the hell isn’t this common knowledge?

I suspect the answer to that question is wrapped up in the same nonsense that led to the fact of the disease not making the news when it first broke back in the ‘80s. But, suffice it to say that there is medication that can significantly reduce the chance of HIV transmission. And, armed with that knowledge, I reached out to my physician.

Round One. 

You would think that living in a suburb of New York City would entitle me to physicians who are up to speed on matters such as HIV prevention. But, no. I first discussed the fact that I wanted to begin PrEP in November with my general practitioner. At first she wanted me to see an Infectious Disease specialist and freely admitted that she was not up to speed in PrEP. I offered to provide her with materials that should provide her with basic knowledge.

I was unable to locate an ID specialist in my area who was a participating insurance provider, plus normal human procrastination set in. When I saw my physician next I was armed with material from the Centers for Disease Control. However, my physician was still reluctant to write the prescription. I next checked out the Westchester County Health Department’s website and found a program dedicated solely to HIV and AIDS issues (check them out: The Hope Center at St. John’s Riverside Hospital. The staff is absolutely amazing and they are extremely dedicated.) It was through them that I finally secured the prescription for Truvada (the PrEP medication).

Round Two.

I have prescription drug coverage which covers both retail pharmacies and mail order. I would get a better deal through mail order, but since I was eager to begin the protocol I decided to take the prescription to a retail pharmacy. Denied.

The physician from the Hope Center filed an appeal with the insurance company. Denied.

I received two denial notices from CVS/Caremark on the same day: Notice of Denial and Denial of Appeal. The only reason provided was this - “Truvada is not a covered medication.”

After a few days of trying to figure out how to handle the denials I contacted the New York State advocacy group named in the denial letters. They tried to be helpful, but honestly, it wasn’t worth the time. They freely admitted that they would be unable to help and guided me toward programs designed for persons with lower incomes. Their plan being that I could just get the prescription filled and have a program pay for the entire retail cost. However, I knew I wouldn’t qualify (I earn too much to qualify, but nowhere near enough to pay for the prescription myself).

Since the denial letter stated that Truvada was not covered by the plan, I decided to contact my Human Resources department. They were very, very professional (a bit surprising since we are a small company and tend to be overly familiar with each other). I did not have to explain the whole story (though I was more than willing too). Instead I merely explained that a prescription had been denied.

Within an hour - literally - they had contacted the plan administrator who called CVS/Caremark and the denial was transformed into an approval. I received a telephone call from the retail pharmacy to let me know that the prescription was ready for pick up.

Round Three.

So now it has been about twenty days that I’m on the PrEP protocol. I take the medication every morning (on an empty stomach – I’m not a breakfast person). And yet, no side effects – except one: I no longer have the deep seated anxiety I would have after a sexual encounter. And, since my anxiety was generalized, I would feel anxious even after a sexual encounter that didn’t involve any unsafe activity.

But I continue to persevere: I can feel that my attitudes toward sex are less frantic, less fraught with fear and anxiety. I’ve even observed small improvements in my sexual relationship with the love of my life. Apparently, without the constant fear of HIV infection, I can engage in sex with the love of my life.

In time, with continued perseverance, it is actually possible that this protocol may restore some sanity to my mind and heart.

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,

Chicago doctor: "I don't always use condoms. And I don't always top. I will not give this up."

I have  a few young guys who need me, who engage me, and it feels so wonderful to be alive now.

via Chicago doctor

I am a 51 year old HIV negative gay infectious disease physician. 

When I began having sex at 19, I bottomed bare from the start with a few guys.  Then at 21 (in 1984), in one of my med school classes, the lecturer said that the development of an HIV test had allowed researchers to discover that for every one AIDS case in New York there were 100 infected.  I suddenly realized that there were more than 3 cases in Michigan, and that the bathroom stall at Mason Hall was not a good idea any more. 

So I tried to marry a guy, as I was kind of like that anyways.  That went 3 years.  Then I got dumped.  I tried Catholic celibacy for a year, then started going to bathhouses twice weekly to watch other guys fuck, but I was too frightened to do anything but oral. 

At work, I watched crop after crop of patients my age die.  Shocking horrible deaths.  Old college crushes one by one were memorialized, and then slowly forgotten   I went to therapists to try to control my behavior.  It worked well enough. 

I tried to marry a guy again at 30.  At 34, I found him crying in the bedroom, having just got his HIV diagnosis that day.  So, I learned we were not actually monogamous, and my escape-the-epidemic strategy had failed.  But it hadn't.  He had made me a top, and I was OK--negative despite the worst sore throat ever that week.  I helped get  him to an  undetectable viral load, took him to my best friend colleague, who put him on crixivan, zidovudine and lamivudine.  He is healthy, and with me, now for 21 years. 

Since I was 35, I have not used a condom when I fuck him, and he has never had a detectable viral load.   I let him come in my mouth, because I want that.  But we stopped having sex when I was 48.  I don't know why.  We love each other.  He is my mate in life.  He bakes me raisin bread, washes my clothes, lies beside me sleeping when I come back at midnight from hospital rounds. 

When I was 48, I saw the "monkey PrEP" data.  I began taking Truvada then, on my own. I took a half pill every day.  I did not tell my internist.  She refers patients to me, and is like a second mother.  I got labs for my cholesterol.  I took  leftover meds that had been returned, as there was always enough, because I take care of hundreds of HIV patients.

I discovered the internet at 49, and Grindr at 50.  I have more sex now than when I was 19.  I have  a few young guys who need me, who engage me, and it feels so wonderful to be alive now.  I don't always use condoms.  And I don't always top.  I will not give this up. 

Each of these relationships (ok some of them are, at best, encounters) makes me feel something-- vital.  I can't suppress these needs through work any more.  I am now officially on PrEP.  I am still negative.  I so hope the miracle of 2012 (when the FDA approved Truvada as PrEP) will save me, just like the miracle of 1996 saved the last few of my college friends. 

 

VIDEO: "Love somebody" - Dakota is back with a vid on his first PrEP day

[Read Dakota's blog from yesterday - Alabama firefighter, paramedic and "pitcher" goes on PrEP.]

In the video, Dakota talks about all kinds of stuff regarding this first day on PrEP. Including having a rather "invasive" checkup before hand - with swabs going in all kinds of orifices. He complains about awful PowerPoints used for patient education. (can we get an AMEN?)  And he talks about how he has always made decisions that were appropriate to him and his life - not paying heed to the judgments of others.

Thanks for sharing Dakota! We look forward to following your journey ;)

Alabama firefighter, paramedic and "pitcher" goes on PrEP

by Dakota
Birmingham, Alabama
(with a shout out to the UAB 1917 clinic

I have often felt that I am missing the opportunity to have a full sex life and "catch" when the time is right.

About 2 years ago I started hearing about PrEP. I only gave it passing interest. As a health care provider (I'm a firefighter and paramedic), I was educated on PeP and even had to go through a course following a needle stick.

But for some reason didn't look into PrEP very much.

Recently I began thinking about it and finally made an educational appointment to learn more. After about an hour and half with a health educator I found out that my insurance does cover it and it's really not even very expensive. I have my first clinic appointment in a few days to be tested for HIV and will go to a group education session and then see a provider to get my prescription.

I'm really looking forward to the security this will provide. Candidly I will admit that I do not use condoms. As a "pitcher" I've always considered it a safer practice but have often felt that I am missing the opportunity to have a full sex life and "catch" when the time is right.

My decisions about condoms are personal and appropriate to myself, I make no apologies for my decisions and I respect opposing decisions. PrEP makes it possible to still have a layer of protection without the layer of latex.

I'm also looking forward to being able to help spread education about PrEP. I hope that everyone can find a strategy that works best for them.

 

¿Que es PrEP? - Learn About PrEP in this Spanish PowerPoint

Ques es PrEP - Profilaxis Pre-exposición - is a short PowerPoint in Spanish describing PrEP for the prevention of HIV.

The smart and fabulous prevention advocate Alex Barros of Miami (pictured) created this excellent presentation. Please take advantage of this great resource.

Alex can be reached at galexbarros at gmail dot com.

 

Physician with Poz Partner Chooses PrEP

via Greg
Chicago, IL

And speaking of protection, even though I'm now on PrEP and my partner has an undetectable viral load, we still use condoms as recommended.

I started taking Truvada for PrEP four weeks ago. 

My reason for wanting to take PrEP is pretty simple; my partner of five months is HIV-positive.  It's uncharted territory for me; I've never been in a relationship with an HIV-positive man in the past.  Out of respect for his privacy, I'm keeping this post anonymous. 

Although I work in the health care field as a physician, I'm not an infectious diseases specialist, and surprisingly, I was totally unaware of PrEP until I started looking at HIV websites earlier this year, in an effort to better understand the side effects of the medication that my partner is taking (Atripla).

After I mentioned PrEP to him, he admitted that he knew about of it, but that he didn't mention it to me because he had heard about all of the risks of untoward side effects.  He was actually "amazed" that I would consider taking it, in view of some of the bad press it has received.  I told him that I'd done a lot of reading about the pros and cons, and that I was comfortable with starting it. 

I had also inquired about Truvada for PrEP with a friend/colleague in infectious diseases who does treat HIV patients, and it was endorsed without hesitation.  I was told that I didn't need an infectious diseases consult to obtain a prescription, and that any physician could prescribe Truvada for PrEP.

So, I went to my primary care physician (PCP) and told him what I wanted and why; I had downloaded the PrEP checklist and agreement form, and brought them to my appointment.  I wasn't shocked, but I was a little disappointed that my PCP refused to write me a prescription for Truvada; he was not aware of PrEP (then again, neither was I), although he agreed that it was the right thing to do.  He repeated my HIV test (which was negative) and requested that I see an infectious diseases specialist in his network, which delayed the process a couple of weeks while I waited for an appointment.  Before I left the office, I handed my PCP a copy of the CDC Guidelines for Truvada as PrEP, which he appreciated.

I eventually saw the ID doc and was screened for hepatitis A/B/C (all negative), then prescribed Truvada for PrEP.  I had been vaccinated against Hep B as part of employment, but never had the Hep A vaccine, so that was also recommended. 

The only potential stumbling block left was insurance coverage.  I wanted to take PrEP, but I couldn't pay ten thousand dollars a year for it, if my insurance carrier would not cover it.  The drug was covered by my insurance (with a $30 copay each month), and I brought my bottle of blue pills home to start treatment. 

My ID doc recommended taking it at bedtime, but after a few nights of insomnia (totally uncharacteristic for me), I switched to taking it in the morning, which restored my normal sleep cycle.   Aside from the sleep disturbance, I've not noted any other adverse effects so far, and I'll get my bloodwork checked again at the 3-month point. 

I don't think there's anything unusual about my PrEP experience thus far, but I just wanted to share my story with the hope that more people will consider taking advantage of this extra layer of protection.   And speaking of protection, even though I'm now on PrEP and my partner has an undetectable viral load, we still use condoms as recommended.

 

Helping people get PrEPared at USCA 2014

Health! Hope. Yes Gawd! Finally!

via
Alan McCord, Project Inform
Matthew Rose, PxROAR
Pedro Serrano, Project PrEPare
Jessica Terlikowski, AIDS Foundation of Chicago
Lisa Diane White, SisterLove

These are just a few of the overwhelmingly positive responses we received from folks when we asked them about PrEP at a booth hosted by Project Inform, AIDS Foundation of Chicago, SisterLove, AVAC PxROAR, and Project PrEPare at this year’s United States Conference on AIDS (USCA). More than 1,000 service providers from all 50 states participated this year and we talked to a lot of them!

Over the course of the conference we asked individuals to share their thoughts about PrEP. We asked what is the first thing that comes into your mind when you hear PrEP? What excites you about PrEP? What concerns you about PrEP?

Each of us at the table talks about PrEP on a regular basis. We were ready to dispel myths, explain the science behind the clinical trials, and help people gain a deeper understanding of this powerful new prevention option.

We were blown away by the level of knowledge that folks came to the table with. They knew about PrEP. They understood how it worked. Some came from agencies that have already integrated PrEP education into their standard prevention risk reduction messaging. Others represented agencies that were exploring the possibility of setting up a PrEP clinic. Many raised practical questions about how, would, and could it work in their communities.

We learned that many clinics in smaller cities or in more suburban or rural areas have begun the

These developments contrast quite dramatically from what 2013 USCA participants said about PrEP. Most stated last year that very few providers in their localities were even discussing PrEP as a viable option. Instead what we heard this year is a clamoring for resources, tools, and support for program staff to ensure they have the necessary skills and knowledge to serve their communities. Many remarked that they simply don’t have the resources to train their staff. And we rarely heard anyone comparing, contrasting, or challenging condom use over PrEP use, or vice versa.

We anticipated more resistance than we encountered. Instead, folks raised practical, earnest, and important questions. How will my community make decisions about allocating resources to PrEP when the prevention pie is already so lean? What steps are being taken to ensure transgender people are a part of decisions being made about PrEP programs?

What can we do about access in the South where Medicaid had not been expanded? How can we ensure people who are undocumented can access PrEP when they are ineligible for health care through the Affordable Care Act? In response to these questions, we shared that Gilead has a patient assistance program that is open to people who are not documented citizens, but can provide evidence of their US residence with utility bills or a library card.

Others shared what the new tool meant for them personally:

• 12:00pm every day.

• More protection for my guy.

• PLHIV in sero-different partnerships further empowered to have families they want.

• Magnetic couples (heart)

All of this isn’t to say that every USCAer was fully supportive of PrEP in this early adopter phase of rollout. We did hear from a few people who are uncomfortable with being on the front end of a new intervention, fearing missteps along the way. Some urged that we slow the PrEP train down until more data are known about adherence and side effects in the real world. Others expressed concerns that people will not take it correctly; they will stop condom use or not use them as much; and that we will see a rise in STIs. Yet for the most part these individuals were willing to engage, listen and ask for more information. We also heard from few people who decided that PrEP was not for them due to concerns about their own individual adherence or reluctance to take pills.

In short, the dialogue was honest and open and respectful. Such characteristics are critical to successful implementation of this new intervention. The PrEP tide is turning. People aren’t just lukewarm about PrEP anymore. They are saying with greater frequency, “of course I know” or “of course I’ve heard”. The tide is turning. People are moving past “what are you talking about?” to another level of “let’s figure out how to make this work.” There are robust discussions happening all over the country as people begin to develop and figure out their communities’ response to PrEP. discussions around implementing PrEP services. We heard this from providers in Salt Lake City, Des Moines, Kansas City, Albany, Rochester, San Antonio, and eastern Alabama, and from the states of Michigan, Alaska and Hawaii.

That Was Easy! Tuan Shares His No Drama PrEP Experience

via Tuan Nguyen
Harrisburg, Pennsylvania

I just wanted to send a quick write-up of going after and obtaining a prescription for PrEP.

My experience was actually simpler and easier than the ones of some other people whom I've read about on your blog. I made the decision in August 2014, and when I make up my mind, then I just do it. I printed out the recommendations under the Risk Evaluation and Mitigation Strategy (REMS) for Truvada for PrEP, and took it to my primary care person, Allison.

I'm a scientist, and specifically chemist, by education and former careers, so I know enough to be dangerous (^_^).

Allison had not had prior experience with anyone requesting Truvada for PrEP, which didn't surprise me because I live in the middle of suburban straight-white-people-land. She's a fantastic certified nurse practitioner (CNP); knows my educational and career backgrounds, and medical history; and we have a great rapport. I carefully explained my reasons to her about why I wanted to start PrEP, and I'm pretty sure that the "I know enough to be dangerous" part helped quite a bit there. I was also confident, which goes back to when I make a decision, then I go for it. She was very supportive, and was more than willing to go ahead. I also let her know about the Gilead REMS site for medical care professionals.

I had my bloodwork done, which came back HIV-negative and with the proper creatinine levels. Allison phoned the order into my preferred pharmacy, but there was some sort of miscommunication because someone at the pharmacy forgot to order the Truvada, which was annoying but mistakes happen so I understood. Then the mail order pharmacy only shipped thirty days of a ninety day supply, and pharmacies can only give out exactly what's written on the prescription, so I had to wait a few more days haha. When I picked up the prescription, the retail cost for ninety days was $4991.99, and the Aetna member cost was $3881.80; however, with my Aetna prescription insurance, it cost ninety dollars. I'm mentioning this to give you some insurance data and pricing data for your website.

I'll also mention that I have scheduled in HIV testing every three months, and I also want additional routine bloodwork done to make sure that my kidneys are all right.

It's interesting how I had a relatively easy time of getting onto PrEP, similar to "Anon in Tampa", especially considering that I don't live anywhere close to a "large" city and/or influential medical university, and/or LGB area.

P.S. I forgot to enroll in the Gilead Co-Pay Coupon Card program, so I probably would have had my ninety dollar copay covered by Gilead. Ah well. I signed up, and I'll use it on my first refill (^_^).

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.

VIDEO:4 Months on PrEP - BareBack Sex, Less Stress, Moving Forward

Day 121: My PrEP Journey

The incredible, passionate, smart and oh so charming prevention advocate Ken Almanza from LA (who we featured on the blog in April ) is back with a new video update talking about his life, sex, relationships, and  being on PrEP.

Four minutes or so - and well worth your time.

Post by Ken Almanza.

Do you spit, or?

PrEP involves swallowing a prescription drug every day to prevent HIV.

You are in the right place to learn more about this safer sex option. Check out our posts, read a fact sheet, and click the links to the right.

If you have questions about PrEP, please email us at myprepexperience@gmail.com. We are happy to help. We are also available to help you troubleshoot any problems you may encounter with your medical provider or with your health insurance.
 

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!

Anon in Tampa - "She was very impressed with the homework I had done, and saw no reason why I shouldn’t be on PrEP."

I honestly thought that the hardest part would be convincing my doctor to consider putting me on Truvada, but I’m happy to say that it wasn’t.

by Anon in Tampa, Florida

I am new to taking Truvada as PrEP, but it’s definitely been on my radar for awhile - it just so happened that a few life changes prompted me to explore PrEP and have a chat with my doctor.

I recently came out of a breakup of an 8 year relationship - we were non-monogamous and fluid-bonded with each other, but used condoms for any other sexual encounter outside the relationship. We were both HIV- and I will admit that we played the game of serosorting (and in my case, being a top, de facto “seropositioning”) when we chose sexual partners to be with.

Flash forward a few months. I was moving forward, but not exactly playing the field sexually, as the breakup had me down in the dumps for quite awhile. However, I did have one close friend who I started to become physically intimate with, and while we didn’t put a label to the relationship, sex with each other was more frequent than a “fling”.

A few weeks ago, he came out to me that he had an HIV test come back positive and that he was worried that he inadvertently put me at risk. I reminded him that we had been using condoms and that I wasn’t aware of any other health factors between the two of us that would put us at higher risk than having sex with someone of unknown HIV status.

I was surprised that my feelings on the matter weren’t as tainted by the “HIV panic” that informed so much of my relationship decision making in the past - but this was a real, live person in front of me who I cared about. It made my previous thinking on the matter seem pretty trivial and backwards.

I started asking myself some hard questions and looking at my sex life in a more pragmatic way:

I am a gay man, with HIV+ partners or partners of unknown status, who will most likely be non-monogamous for the entirety of his sex life.

So why wasn’t I using PrEP?

I honestly thought that the hardest part would be convincing my doctor to consider putting me on Truvada, but I’m happy to say that it wasn’t. I know that the practice I go to treats quite a few of my LGBT friends, but it isn’t the kind of office that advertises in the local gay monthly, and, to be frank, they’ve always seemed a little haphazard in their approach to HIV testing (always at the patient’s request only, and with a double-paged consent form full of arcane legal wording that says that the test is not confidential), so I wasn’t expecting much.

However, my doctor informed me that she and another physician at the same practice had just been discussing PrEP the day before and were committing to get educated so that they could be ready for the first person to request consideration of a prescription. It just so happened that I brought it up the very next day.

I used the factsheets from the My PrEP Experience site and Gilead (check out links to the right for these and more) to better inform my doctor of why I was bringing it up and what my lifestyle factors were. She was very impressed with the homework I had done, and saw no reason why I shouldn’t be on PrEP from a general point of view.

With my recent HIV test and blood work, my doctor was able to write my prescription immediately and also ordered a more full STI picture as a baseline (to rule out any chance that I had Hepatitis B). My insurance covered all but a reasonable co-pay, and I was able to start taking it pretty much immediately.

I wanted to tell this story because this happened in Tampa, FL, at a practice that is not specifically focused on LGBT concerns. Sure, Tampa may be one of the larger Florida cities, but it’s not specifically known for having a liberal take on social issues, so I was a little worried that the doctors may be closed-minded when it comes to PrEP.

I was very happy that this was not the case.