Road Blocks Didn't Stop Him From Getting PrEP

I finally got up the courage to seek PrEP in April 2013. 

by K.W.
Austin, TX

There's a lot of detail I'm going to spare you, but essentially in 2013 I moved to a different group practice in Austin, TX. I established care with a new Doc at the beginning of 2013. PrEP started to come into focus for me as I discussed it with friends and did a lot of research. I finally got up the courage to seek PrEP in April 2013.

I look back 11 months ago, and realize how difficult it was for me to do this. It was nearly on par with coming out to my family in 2005.

So I called to make an appointment with my new Doc and the nurse immediately shut it down, said I'd probably do better to find a specialist. I asked for a referral within the group, and was told they didn't have an HIV care specialist. Lovely.

The nurse did me a favor. I went back to my old group practice, researched their website and booked an appointment with a new Primary Care Physician, w/ HIV Speciality. One week later, sitting across from my new Doc, he looked at me and said "You're number 2"... meaning, I was the second to request PrEP. He began the discussion of all that was involved and quickly realized I'd done my homework. That was it, pending labs results, my Rx was written.

What prompted me to share this with you?

It's been nearly a year- and to my knowledge, my old group practice lost (first hand knowledge) 4 patients over denial of PrEP. Today I called the Administration office of my old group practice to share my story. Somehow the phrases "Issues regarding your Standard of Care" and "Possible Denial of Care" got my phone call forwarded to a very interested party on the other end of the line.

I was forgiving, and spoke highly of my previous Doctor. I framed this as a "missed opportunity" x 4 for very well established Clinic that prides itself in it's depth and breadth of services. The person taking down my information said the Medical Director will probably be calling me back.

So please, if you hit a road block, do what you can to get your doc in the loop.

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

I am a Truvada Whore

by @pupbones

San Francisco

What is it about Truvada PrEP that is so upsetting to some people? 

We all know change is hard… especially after you’ve been trained to have sex a certain way your entire life, after you’ve watched dozens of your friends pass away in mere months, after you’ve repressed your sexuality since childhood, all the while fearing death, disease, and social-rejection. These things are hard to talk about. There is certainly a great deal of stigma surrounding HIV/AIDS, even in San Francisco. Conversations about HIV status, viral load, and PrEP aren’t happening as often as they should be.

New HIV diagnoses in San Francisco have remained steady over the past decade (according to the SFDPH HIV/AIDS Epidemiological Annual Report 2012). We can only speculate about these new cases, but it is safe to say that HIV stigma often plays a role in new transmissions. Take for example, a man who doesn’t know he is HIV-infected (with a spiked viral load) and declines free HIV-testing services due to perceived stigma of HIV. Also take for example, the awkward young man who just got invited back to a hot guy’s place for sex, but feels that a discussion about HIV status and condoms will kill the mood. Take for example, the man who decides to utilize Truvada PrEP (pre-exposure prophylaxis) in order to prevent HIV infection, but is “slut-shamed” by both HIV negative men and men living with HIV. 

What we've done in the past to prevent HIV simply isn’t working anymore. Public health has to evolve with the changing social landscape. PrEP is a great tool to address the reality of the world we live in today.

What is it about PrEP that makes HIV-negative men so uncomfortable? 

Is it that they think PrEPsters are a bunch of rich, sex-crazed SF dudes who go wild at our private sex parties? Is it that they think we take anonymous dick at Steamworks, and then use PrEP as a morning-after-pill? Is it that they think we’re a bunch of disease-ridden, Typhoid Marys who take load after load from poz dudes? I don’t know the exact reason; maybe they’re just jealous that we’re having all the fun! I’ve heard all their anti-PrEP justifications: “it doesn’t protect against sexually transmitted infections” (which are totally treatable/manageable BTW), “it’s expensive” (it can be free if you try hard enough), “it will turn you into a slut” (most clinical studies have shown PrEPsters actually reduce their number of sex partners after starting  PrEP), that “it’s not effective” (daily Truvada adherence yields a 99% reduction of risk… safer than  condoms), and that Truvada has nasty side-effects (most people don’t have side-effects, it is very easy on the body). 

For those reasons I say, perhaps Truvada is not right for you! But it is right for me and many other people. I would much rather remain HIV negative and take Truvada in my “whorish” 20s and 30s, than be HIV+ and have to take medications for the rest of my life.

What is it about PrEP that makes HIV-positive men so uncomfortable? 

They love telling me how their anti-retroviral medications make them feel so terrible and that they wish they didn’t have to take them. I can empathize with the fact that you feel that way, but I have not been living with HIV for 20 years, so we definitely cannot compare our current states of health. Truvada is a very well-tolerated drug. It is a medication that has been used as part of combination therapy to treat HIV-positive people since 2004. 

And then they ask me, why don’t you just use a condom? 

Well, I do most of the time, but sometimes things happen, sometimes condoms break, sometimes it slips off, and no one knows until it’s over… there are so many variables that can contribute to HIV transmission. Why would you discourage me from wanting to do something to keep me HIV negative? Wouldn’t you do the same thing if you were in my situation?

Instead of stigmatizing people who decide PrEP is right for them, we should affirm and empower them for taking initiative and personal responsibility for their own health. Positive messaging is what we need. After

I started PrEP 16 or 17 months ago, things changed dramatically for the better. I felt comfortable with
the sex I was having, I felt more confident negotiating sexual encounters, and I generally felt better about my life. I don’t know who I would be today if I hadn’t started PrEP back then. 

In order to create a better sense of community and belonging, I’m pushing for the re-appropriation of the term “Truvada Whore.” “Queer” used to be an insult? We happily took that word back, and it subsequently lost its power as a derogatory word. David Duran wrote a piece entitled "Truvada Whores" for the Huffington Post back in November 2012. In it he coined the term "Truvada Whore" and stigmatized PrEPsters. After learning more about PrEP, he changed his views, and  is currently a PrEP ally. And he’s a super cool dude. Read his latest HuffPo piece "An Evolved Opinion on Truvada."

Are you a “Truvada Whore” or an ally? Help me take the word back, wear it as a scarlet letter, be loud and proud. Follow me on Twitter, @pupbones. Search social media for #TruvadaWhore. Buy a #TruvadaWhore t-shirt and support AIDS/LifeCycle 2014. 

I’m tired of standing back and letting the world fall into complacency.

I’m ready to make a difference. I am a “Truvada Whore.”

EDITOR NOTE: Check out the new TruvadaWhore.com for links to helpful info on PrEP.  It is just a simple page at the moment, but the hope is to make it a bit more visual and fun. The domain name was purchased by an advocate early in the year, and when he found out about @pupbones and his fabulous  #TruvadaWhore campaign, it inspired him to get something online - yesterday! Stay tuned...

Buckle Up - Getting PrEP A Very Bumpy Ride

I got the impression that they thought I was just some gay pig bottom whore that wanted to party on the weekends.

Getting PrEP has not been easy for S. Among other challenges, he has faced grossly misinformed providers.

[Editor's note: S's experience illustrates, among other things,  the lack of knowledge about PrEP amongst a number of healthcare providers. He was told inaccurate information in a number of cases. We have highlighted in red the instances where providers gave incorrect or inaccurate information and provide a few editorial comments. After you read his story, check out this video that busts three common PrEP myths. And prepare yourself if you are interested in getting PrEP for yourself. Your doctor may need some education. Here is a handy brochure from CDC that can help you get ready for a PrEP visit to your doctor. Download and print or have it ready on your phone when you go. Do not assume your providers will know about PrEP. It is better to actually assume they know nothing. We are happy to help troubleshoot with you. Just email us.]

My journey to get PrEP started in June of 2013. Before that time, I had not even heard of PrEP.

 by S.

I was at a conference, and one of the speakers was giving a presentation on PrEP and TasP (treatment as prevention). Both of these were unknown to me, although I was aware of PEP (post-exposure prophylaxis).

At that time, I did not think Truvada was a viable option for me due to cost. But the seed had been planted.

In January of 2014, I read several articles praising PrEP from sources like Slate and Huffington Post. I started to do some research on my own, and decided to investigate this option further. I took two initial steps.

First, I contacted my insurance company to find out if my student health insurance would cover Truvada. It took several weeks, but they finally said it would be covered, but that I might need an authorization.

Second, I scheduled an appointment with my doctor on campus. Due to my student health insurance,

I need to visit the campus health center to be covered. My doctor was very friendly, and open to the idea, but was not familiar with PrEP. She agreed to allow me to get the kidney, liver, and HIV test I would need before starting Truvada, and said she would research PrEP and talk with the other doctors at the health center.

My test results came back, and I was HIV- and had healthy kidney and liver functions. Meeting with the doctor, however, did not go so well. She informed me that neither she, nor any of the other doctors on campus, felt comfortable prescribing this medication for the purpose I intended. She did refer me to an infectious disease specialist though.

It took a week to get the appointment, and the appointment was for six weeks later. So I was back to waiting.

Finally, the day of the appointment arrived. I was meeting with the Director of the Division of Infectious Disease for the state I live in. I waited 45 minutes to go back, and then, after meeting with the nurse, a resident came in. She verified that I wanted PrEP, and then started asking me questions.

"Do you have sex with men, women, or both?" she asked in a staccato manner. "Men" I replied.

 

"Do you have anal or oral sex, or both?" "Both" I replied.

 

"Umm .. do ... " "I'm the receptive partner" I answered for her.

 

"So your partner is HIV+?" "No" I replied. "I don't have a steady partner."

 

At this point, she put her pen down and stated "We don't prescribe this to people like you." [Ed: She is totally wrong. You do not need to have a steady partner, HIV+ or otherwise, to be prescribed PrEP.] 

 

Huh. Two months of waiting, and a flat-out no. I asked her "Just like that? No?"

 

[VIDEO] Busting 3 PrEP Myths

Our friends at San Francisco AIDS Foundation and their BETA Blog partnered with Youreka Science on this fantastic, short video which provides great info on PrEP and busts 3 myths at the same time.



Myths busted:

1. PrEP doesn't work - busted.
2. PrEP causes bad side effects - busted.
3. PrEP is impossible to get - busted.

Watch! And look to the right for links to more info, resources.
 

[PRESO] PrEP Community Opportunities and Challenges

Last week, My PrEP Experience's Jim Pickett spoke at the PrEP Forum in San Francisco, with University of California San Francisco and other partners. His focus was on some of the opportunities and challenges associated with PrEP that communities, particularly gay men in the United States, are dealing with.

Take a look.

PrEP Community Opportunities and Challenges from Jim Pickett

If you would like to check out some slides that have more complete information on PrEP - how it works, side effects, adherence, what it doesn't do, how to get it, etc - check out slides from our Project Ready, Set, PrEP! training here.

Any questions about PrEP, feel free to email us.
 

[VIDEO] PrEParing for HIV

Despite really herculean efforts with condoms and condom education, we still have a stable rate of HIV infections in the United States every year, according to the CDC approximately 50,000 new infections annually... Clearly, we need something more, and it was out of that realization that PrEP was born...

 

This (12 minute) educational video takes a look at PrEP, a prevention strategy for people at high risk for contracting HIV. Researchers at the University of California explain how pre-exposure prophylaxis (PrEP) works as they describe a four-year, multi-pronged demonstration project with gay men in Los Angeles and San Diego.

 

"It's like a monkey wrench that gets thrown into the gears that is HIV, and prevents HIV from reproducing itself in a person's cells." 

Participants agree to take a Truvada pill daily to reduce their risk of getting infected by up to 99%. But will they follow through?

Methods to increase adherence among the participants are being tested, including daily reminders via text messages and tracking usage of the medication with special "Mems caps" for the pill bottles.

 

Watch below. Learn more here. 

 

PrEP provides peace of mind and relief... and I don't want to be on it forever

by J.

 

 Like most people I have talked to on PrEP my sexual habits haven’t really changed. 
I’m still a hopeless romantic looking for the right guy, sometimes in the wrong places.
I’m still not perfect with condoms, but I also have
confidence that I am still protected. 

   

Growing up in the 80’s and 90’s HIV/AIDS was everywhere.  The news consisted of periodic death updates just like during the Iraq war.  Because I have always been a person who devours any type of knowledge I knew all about the disease but didn’t think about it in relation to myself.  Health class told me more, but I didn’t really pay attention because it was the standard fear mongering talk which said any sex was going to kill me. 

 

It didn’t hit home until my junior year sociology class where my teacher brought in a speaker who had AIDS.  He talked about the treatment he endured at the time including things like injections in his eyes to try and stave off blindness.  For the first time I with my eyes what the disease could do, and for a guy questioning his sexuality it was shocking.

 

 

After I came out sex for me was always varied, top, bottom, oral, it didn’t matter I loved it all.  Like most men I can’t say that I was always safe.

Despite the vision of the man in my soc class, and my better judgment, a hot man could still make me
do dumb things.  Soon I met the first guy I dated who was HIV+.  We usually used condoms, but when he told me not to put the condom on as he laid on my living room floor I complied.   Despite being educated I thought I was going to end up positive from that encounter.  I dated him for over two years before it ended.  It was only then that I had the courage to get tested. I had resigned myself that there was a good chance that I was positive from the occasional lack of protection, despite him being on treatment.  Again it was negative, but this time it had a lasting impact. 

From that moment I forward I always got tested 3-4x a year, but I still couldn’t say my practices were perfect, I am human.  As I grew up I gained knowledge, and wasn’t afraid to get tested anymore, yet it was always a nerve racking experience.  I still wasn’t perfect with protection, and I knew it wasn’t foolproof either.

The inevitable “promises to myself” would come on testing day that if “I’m just okay this time I won’t do that bad thing again”…

 

Bad boy!  This coming from an exceptionally rational person, it didn’t make sense even to myself.  Hoping and praying is not a substitute for real prevention based on science. 

HIV still one of those topics that people still talk about in hushed whispers saying things like “you’re clean right? okay, just don’t cum in me”  While recognizing the sheer idiocy of such flawed logic, I was not immune to this method of “prevention”.  The complete failure of this method of prevention hit home in 2012 when two good friends tested positive.  The emotional side of me was shocked, the logical side expected it.  Looking at the stats, I figured I was eventually going to be a statistic.

I don’t remember where I originally heard about PrEP, but what stood out more than anything was the figure 99%.  With that I devoured every article I could find on PrEP and Truvada.  I have a healthy skepticism about many articles about HIV treatment, prevention, cures etc.  You can only hear “a cure or vaccine is two years away” so many times before you become dismissive; yet in this case I was enthralled to find that PrEP was something that actually worked, and with that I knew it was for me.

I have always been open with my doctors because I figure there is no way they can help me if they don’t know the true story.   Because I was so honest the discussion was easy, I knew I was in a high risk group, and my doc agreed.  Within a week I had my prescription.  PrEP isn’t cheap, but luckily it’s covered by most insurance.  Also, Gilead the drugs manufacturer has an assistance program that covers much of the cost for many people. In my case it took a couple phone calls and faxed forms to make it cost me less than $20 a month.  Insurance or not, it is available. 

 

  

Before I started I was nervous about side effects.  Unlike many people I take very little medication, Aspirin for aches and pains, and Nyquil if I get sick is about as far as I usually go.  With that in mind I took my first pill on that warm July day in 2013.  After dating a few poz guys and reading up on the medications, I expected some side effects, but luckily for me I didn’t have any, even when first starting the medication. 

 

That first month I missed two doses. 

 

 

This annoyed me because I knew I needed to do this correctly for the protection I had wanted for so long.  That problem was solved with a $1 pill case.  A pill case would be my #1 recommendation for any “PrEPer.”  All you do look at the pill case and say, “Is the pill in there today?” take it, if not, you’re good.  I haven’t missed a dose since.

What PrEP has really allowed me is peace of mind and relief.  The testing anxiety that would come around every three months prior to PrEP is gone.  Before, I would get nervous even if I had done nothing dangerous. 

Like most people I have talked to on PrEP my sexual habits haven’t really changed.  I’m still a hopeless romantic looking for the right guy, sometimes in the wrong places.  I’m still not perfect with condoms, but I also have confidence that I am still protected.  Like myself when I was younger many people still don’t get tested enough.  It doesn’t matter how good the trade from the bar looks, if his test was a year ago, how can you be sure he’s negative?  Even if he’s not and you make a bad choice PrEP has got you. 

Now 8 months in, I can honestly say PrEP is one of the best things to happen to me.   I don’t want to be on it forever, but I REALLY don’t want to be on HIV medication the rest of my life for a disease that can kill. 

 

To me it’s one of the most important developments for gay men in the last 30 years.  We are no longer dependent on just condoms to prevent the disease that killed a generation of gay men.  I personally see it as the gay version of birth control.  Yes, you should still use other methods, but PrEP is there when you don’t.

 Three things have changed for me in the time since I have been on PrEP.  I am now much more comfortable talking about HIV, and prevention.  Coming from a person who used to work in prevention I always used to feel like a hypocrite because I didn’t use a condom every time yet that’s what I preached, PrEP empowered me to tell people to take a stand against HIV even if they forget the raincoat. 

Dating HIV+ guys has also become a non-issue, I had no problem with it before, but it was always on my mind.  With PrEP, I am more concerned about who is coming out for happy house. 

The third is that my wallet is lighter by $20 a month.  Even if it was $100 or more I would pay it.  Ask a senior, you can’t put a price on health, pay now or pay later.       
 
I’m open about being on PrEP with friends and acquaintances.  If they want to judge me, let them.  I would much rather let people know about something that can protect them against the cheating boyfriend, guy lying about his status, or person who never gets tested. 

There is no reason to be ashamed of protecting yourself.  HIV is still very much real, we can talk about it, and protect ourselves or we can ignore it, for me I will choose the 99% effective PrEP.