Your Experience is a Gift

For questions about PrEP in general, and for a Chicago/Illinois specific provider listing, visit

Sunday, July 26, 2015

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]

Tuesday, July 21, 2015

"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.

Thursday, July 16, 2015

Happy PrEP-Aversary!

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

Happy Birthday!



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.

Thursday, May 28, 2015

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.

Monday, April 20, 2015

Paul from Cape Town - "What if all your anxiety, your fear, your doubt... Just one pill... It could disappear?"

It’s at this moment I should don my leather jacket, put on my sunglasses and say in my Matrix voice “What if? What if I told you that this world that you see before your eyes could change with a pill? What if all your anxiety, your fear, your doubt... Just one pill... It could disappear?"

via Paul Watson
Cape Town, South Africa

The first time I met him was at an orgy.

It wasn’t one of those romantic moments from Cosmopolitan magazine. Nor was it one of those love story moments that make you feel like a sociopath for not ever having been in one of those hazy coffee shop situations …. but, we recognized each other.

He was naked, sweat glistening on his body, and when he got up, his cock seemed to be the one that wanted to shake hands.

 My clothes were off and we were soon in a tangle of arms and legs. In amongst the temptations, salty kisses and heaving men - it was his eyes that I sought out. It was his hand that held mine in the throes of passion. It was his warm hand that touched and caressed me as I lay there thinking about an escape. But I digress, a bit of background information may be required to follow the thread of this story.

I am not a handsome devil or a cherub-faced guy. I am just your normal, run-of-the-mill, everyday man. But that’s what makes me so dangerous. I smell like a man, I look like a man, I have grey streaks in my beard and tiny laugh lines at the outer corners of my eyes. I have a wry smile and a naughty glint in my eyes. I can track a smile from way across a room and am very aware of any mans’ lingering gaze on my crotch. Through many years of practice my success rate is pretty high – although I don’t always get the guy.

In banks, shopping malls, gyms, out jogging, I spot them - looking. I always make the first move. A greeting, a friendly “Hello” and, once I have the slight confirmation of mutual “lust”, I swiftly move in for the kill. Like a slathering and ravenous wolf that hunts alone, I have taken singles, couples and sometimes groups.

My taste in men is real men! They range from hairy-backed bear-like men to smooth-chested accountants to beer-bellied and chain-smoking alcoholics. Married men, straight men, gay men - I don’t discriminate. Sometimes I string them along if the sex is good but, often, it’s a once off mutual understanding of lust and release. To have sex with a man is an all-encompassing and overpowering urge. An urge that is so great that it overshadows all else and, like a scalding knife that cuts into your brain, short circuiting all thoughts other than the one goal – to get one thing. SEX!

"This isn’t me," I hear you cry, "I do not have urges like that."

I cannot relate. Being gay in the 1980’s until the present day has had some very interesting parallels. Where once I was ashamed and hid my sexuality for fear of rejection. I now find that, even though I am an openly gay man, I still have a largely hidden private life.

In my twenties, my boyfriend at that time introduced me to a man who would sit at the end of the local gay bar with a cigarette in one hand and glass of wine in the other who would deliver a string of witty comeback remarks that had us in stitches. A few short months later we stood beside his bed in the local hospice saying our goodbyes to him. I remember his pleading eyes in a sunken face - betrayed by the disease that ravaged his body. This was a harsh early lesson learned regarding the realities of the AIDS generation and the consequences of erratic condom use. At the time, my own condom use was approximately 50%. People don’t always think in the heat of passion, they just dive on in and deal with consequences later.

Show me a man that has a 100% condom usage rate, and I will show you a politician in the making.

This experience certainly scared me enough to use a condom or to at least, limit myself to one partner at a time for a while. Like most victims of the AIDS epidemic, names and faces would just fade like some melting ice berg. Here today, gone tomorrow - and the uncaring world and life goes on.

The truth is - the world NEVER stops.

In this life, no one gets out alive … No-one.

It was after I had sex with Mr O on a number of occasions that he advised me of his HIV status. He was HIV positive. He told me as we lay together, holding on to each other as if the world were disappearing beneath our feet. I could feel him clinging on to me - almost expecting me to jump off the bed and run hysterically down the street. Inside I was screaming - I wanted to scream at him. I wanted to cry, and plead - but I was surprised by my own actions.

I kissed him instead. Mr O, with his placid nature and his understanding eyes cradled me in his arms as if protecting me from a terrifying storm. There was something even stronger than the tempest inside of me, HIV/AIDS, death … These things were part of him, a huge part. These things ruled his life and had done so for years. Would they start to rule mine as well?

After he told me, I was filled with mixed emotions. I wanted to run, I wanted to get away. It was as if I had been burnt by a flame. Things I’d read in magazines, information spread by the media and things that friends and acquaintances had said swirled around in my head. I wished them gone - this HIV thing had become too real. Even language and means of communication has changed, we whisper in each others’ ears “Are you clean?”. These words contain so much negative stigma that this disease has spread. We say it as though someone with HIV is dirty, an unclean and unholy thing.

When I left him - I ran. I ran to be tested. 

It had been three years since my last test and I’d liaised with about 150 men during that time. Who bothers to count, it’s just a recreational pastime. During the process of thinking about, planning and being tested I comforted myself in the one way I knew would soothe my soul, even if just for a short while. Sex! As my phone chimed and the hook up was set I buried all thoughts of HIV and tried to lose myself in someone else. My next partner was married. The sex wasn’t messy, it just wasn’t completely safe. Empty promises of repeat performances were exchanged. As soon as he was out of the door, the guilt set in.

Tuesday, April 7, 2015

Dwayne in Atlanta - "Take control of your sexual health, and don’t be afraid to ask questions."

via Dwayne Hickman
Atlanta, Georiga

This is Dwayne and I have been on PrEP almost a year and I would like to share my PrEP experience.

One of the main reasons I decided to go on PrEP was demographics; I am an African American gay male living in Metro Atlanta. Metro Atlanta has the third highest LGBT population in the country. We have a very diverse and cosmopolitan community. Also, Metro Atlanta has one of the most economically and political empowered African American communities in the country.

But both communities have a disproportionate amount of HIV infections, and the odds were stacked against me. In Metro Atlanta, over 60% of all African American gay/bisexual over 30 years old are HIV positive (according to Emory University) and Atlanta ranks Number one in all new HIV cases. Recent studies indicate half of those recently diagnosed have already progressed AIDS. I have seen close friends, a family member and a boyfriend succumb to the disease and I have feared HIV all of my adult life.

These numbers were very alarming and created a lot of anxiety, which caused a sense of fatalism. I have always placed boundaries on myself, but I started to go beyond my boundaries quite often.

Then I empowered myself; I decided that I was 100% responsible for my health and I re-educated myself about HIV and HIV prevention strategies. I went on a regular testing schedule. I was determined not to be a victim or just a statistic on a government chart.

Then I discovered PrEP from a couple of HIV Activist/Educators (Aaron Laxton and Walter Lee Hampton II) on You Tube and I wanted more information.

I went to a couple of AIDS/HIV Service Organization and was surprised and frustrated at the lack of information. In addition, I was also surprised about the lack of marketing by Gilead; the manufacturer of Truvada.

I called my Primary Care Physician and he never heard of PrEP. I kept running into stonewalls, this made me determined to find out more information; the internet was helpful, but I wanted more. I called Gilead and they sent me the forms for co-pay assistance and the necessary information. Then I called an Infectious Disease Specialist that specializes in the treatment of HIV and they were familiar with PrEP.

After the initial HIV test, I received the green light and started in the spring of last year.
Today, I feel more empowered and no longer fear and worry HIV. I am surprised how many of my contemporaries have never heard of PrEP despite the extensive coverage in the LGBT press and the main stream press.

I am spreading the word, and I hope this information is helpful to anyone considering PrEP. Take control of your sexual health, and don’t be afraid to ask questions.

Wednesday, April 1, 2015

VIDEO - CROI 2015 Panel on The Hottest PrEP News out of the Conference

My PrEP Experience's Jim Pickett (Director of Prevention Advocacy and Gay Men's Health at AIDS Foundation of Chicago), moderated a panel on PrEP at the recent CROI 2015 conference.

Click below to watch the video and get caught up on the latest PrEP science.

Joining him were Mitchell Warren, Executive Director of AVAC, New York, NY; Jean-Michel Molina, Head of the Department of Infectious Diseases, Saint Louis Hospital, Paris, France; Myron Cohen, MD, UNC School of Medicine, Chapel Hill, NC; Jared Baeten, Department of Global Health, UW, Seattle, WA; and Simon Collins, HIV i-Base, London, England.

In this video, primary investigators discuss the PrEP PROUD study in the UK, the IPERGAY "on-demand" PrEP study (France, Canada), the Partners PrEP Demonstration Project (Kenya, Uganda), and the hope of long lasting injectable options for treatment and prevention.

The CROI 2015 website has recordings of all the major scientific presentations from the conference - check it out to dive in deeper.

Monday, March 30, 2015

"On Demand" PrEP for HIV Prevention? - Singapore's Dr. Tan Weighs In

[This is Dr. Tan's second contribution to the My PrEP Experience blog. Here is his first. ]

via Dr. Tan

Over the years I have seen more and more patients come forward to enquire about PrEP for HIV prevention. It is very encouraging and heartening for a doctor to see this. This is evidence that there is more awareness and a greater willingness to protect oneself and whether intentionally or not, also protect public health and society at large.

Every person who goes on PrEP is one step closer to ending the HIV epidemic. At least that is the way I see it.

However, there is very little support for people living with HIV in Singapore and even less support for people who want to prevent themselves from getting HIV. Government or insurance aid for PrEP or PEP is unheard of. As a matter of fact, Truvada is not even officially indicated for HIV PrEP in Singapore.

So in this very challenging prescribing climate, one of the main barriers to patients taking PrEP is obviously the cost. Patients can be out of pocket $900 Singapore Dollars (US $660) for 30 tablets of Truvada! So unless you are zipping around in a Ferrari, which by the way costs north of 1 million Singapore dollars (US $733,000), it would be rather unlikely you can put aside almost a thousand dollars every month for PrEP.

So more and more patients I find are asking about and taking PrEP on an on demand basis rather than daily.

Let me first start by stating that this is NOT the way to take PrEP. The Clinical Practice Guideline published in 2014 on the use of Preexposure Prophylaxis For The Prevention Of HIV Infection In The United States clearly states “Do not use other than daily dosing (e.g., intermittent, episodic [pre/post sex only],”.

The same publication goes on to state “The time from initiation of daily oral doses of TDF/FTC to maximal protection against HIV infection is unknown.” And “data suggest that maximum intracellular concentrations of TFV-DP are reached in blood after approximately 20 days of daily oral dosing, in rectal tissue at approximately 7 days, and in cervicovaginal tissues at approximately 20 days.” Further suggesting that ad-hoc dosing theoretically does not provide the same level of protection or perhaps even no protection at all.

Be that as it may, we have to face up to the realities of real world medicine. The reality is on demand PrEP is a potential solution to the high costs of Truvada. Although early days, there are some studies coming out of Europe that seems to suggest that “on demand PrEP” works well in reducing the risk of contracting HIV. In fact, it was reported at the CROI 2015 conference that “on demand PrEP” reduced the risk of HIV infection 86% among gay men in the Ipergay study. (The Ipergay protocol involved taking 4 doses for a sexual act - 2 doses before, one dose 24 hours later, and one more dose 24 hours after that - see diagram above.)

My patients take Truvada 3 days prior to the exposure, everyday during the exposure followed by another 5 days after the last exposure. This is slightly more conservative compared to the Ipergay study that asked the patients to take 2 Truvada pills from 1 day to 2 hours prior to sex then another pill 24 hours later and a forth pill 48 hours later.

Although I have yet to publish any data on this, I am happy to say that none of my patients currently taking on demand PrEP have been diagnosed with a HIV infection (I’m knocking on every piece of wood available).

We certainly need more and larger scale studies to establish the efficacy and safety of on demand PrEP and also delineate an official dosing regime. But for now, it seems to be working for my patients and saving them a chuck of cash. So if you are faced with the same cost challenger, you might also want to talk to your Doctor about on demand PrEP.

Dr Tan is a Doctor practicing HIV/STD medicine in Singapore. He can be contacted at

Tuesday, March 24, 2015

Chicago's CORE Center Gets Ready for PrEP - Clinic Opening Early April

Below is a post from our sibling Facebook page - Project Ready, Set, PrEP! (Project RSP!).

We are very excited to announce that the CORE Center in Chicago (2020 West Harrison Street, 312-572-4500) is launching a PrEP clinic in early April. Please click through to Facebook to check out for more pics from the training CORE staff participated in last week to get ready for PrEP.

Stay tuned for more clinic details on this blog, and on our Project RSP! Facebook page (so be sure to like us, if you haven't done so already.)

This is a very important advance in PrEP access in Chicago and will help many folks access PrEP and its associated services - please spread the word.

Monday, February 2, 2015

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.

Tuesday, January 27, 2015

PAN Foundation Expands Eligibility Criteria for HIV Treatment and Prevention Fund for People who Need Pre- or Post-Exposure Prophylaxis

Read more about this program here.

This is an important source of support for insured people needing help paying for PEP or PrEP. Here is the basic criteria, followed by the weblink to apply for support>

Maximum Award Level - $4,000 per year.

Patients may apply for a second grant during their eligibility period subject to availability of funding.

Eligibility Criteria
  • Patient should be insured and insurance must cover the medication for which patient seeks assistance. 
  • The patient needs to be HIV positive, or be HIV-uninfected and at high risk of acquiring HIV, or be HIV-uninfected and have been exposed to bodily fluids potentially containing HIV within the last 72 hours. 
  • Patient must reside and receive treatment in the United States. 
  • Patient’s income must fall below 500% of the Federal Poverty Level

Click here to learn more, and apply for support.

Friday, January 23, 2015

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.

Brandon and Shane

Appeal Letter to Catamaran Prescription Benefit  
January 4, 2015
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. ( 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,

Tuesday, January 13, 2015

Matthew in Columbus - "The peace of mind is tremendous."

Now after a week I feel no different than before I started taking Truvada but the peace of mind is tremendous.

via  Matthew
Columbus, Ohio

I just began taking Truvada as PrEP about a week ago so I thought I would share my experiences.

I was visiting my doctor for an annual checkup and thought I would ask her then about a prescription for Truvada.

My biggest motivation was that I'm presently seeing someone who is HIV+ and responding very well to therapy, but the risk of transmission is always an issue during intimacy especially for him.

My secondary motivation is that when not in a relationship I have a pretty miserable track record of using condoms.

In preparation of talking to my doctor about Truvada PrEP I decided it would be wise to provide as much information as I could find in order to make our discussion more productive. My prescription insurance provider through my employer is Catamaran and I could find exactly nothing on their website regarding Truvada PrEP. After a lengthy session with Google I found a document that details Catamaran's coverage policy and a link to Gilead's Truvada PrEP website.

I printed out the Catamaran document and everything on the Gilead site, read over it all, and put together a packet for my doctor. This proved to be critically important. 

At first mention of a prescription for Truvada my doctor told me that Truvada wasn't something she could prescribe to me because I was, as of my last test, HIV negative. Surprisingly, she wasn't aware that Truvada was even authorized for PrEP, despite having many HIV+ patients and being very familiar with HIV treatment. This tells me that the medical community needs better education of Truvada PrEP so that they can better work with patients who could benefit from it.

I can only imagine that if my doctor, in a practice that specifically notes that they accept HIV patients in a large city with a huge gay population, wasn't aware of Truvada PrEP that awareness in the medical community at large is sorely lacking and high-risk patients are missing out.

After a long talk and a pause while my doctor read over the materials I brought along, she agreed to consider a prescription after being sure that Truvada was appropriate for me. After a couple of days she notified me that my HIV test, taken the day of my visit as a pre-requisite for Truvada PrEP, was negative and that she had sent the prescription to my pharmacy.

Of course, pre-authorization was required from Catamaran and that process took a few days. I am now approved for 12 months of Truvada PrEP with HIV blood tests every three months, along with a bone density scan and kidney/liver function tests as a result of rare, but serious, potential Truvada side effects. My particular prescription plan requires that I pay a $25 monthly co-pay, but I have signed up for Gilead's co-pay assistance program to cover even that nominal cost.

All in all it was pretty easy. The hardest part was gathering the information to share with my doctor and educating her.

I only experienced the very mildest of side effects - a tiny bit of dizziness - for the first two mornings after I took my pill.

Now after a week I feel no different than before I started taking Truvada but the peace of mind is tremendous.


#TruvadaWhore (2) access (2) advocacy (6) Affordable Care Act (2) AIDS Foundation of Chicago (4) Alan Johnson (1) antiretroviral therapy (10) Atlanta (1) AVAC (1) ball (1) Bangkok (1) Bangkok Tenofovir Study (1) bareback (2) billing codes (1) black gay men (13) black MSM (2) bottom (1) ButtaFlySouL (3) Canada (7) Cape Town (1) CDC (6) Center on Halsted (8) Chicago (18) clinical (2) clinical trial (2) clinician (2) co-pay (4) community forum (7) control (1) CORE Center (1) CROI 2015 (1) Damon L. Jacobs (3) David Dodd (6) demonstration project (1) Derek Brocklehurst (1) doctor (14) drug coverage (3) gay (44) Gilead (9) Give Out Day (1) guidance (2) Gustavo Varela (1) health insurance (24) heterosexual (5) HIV (16) HIV prevention (112) HIV-negative (45) HPTN (1) IDU (1) Illinois (1) injectable PrEP (1) injection drug use (1) Ipergay (1) iPrEx (6) Japan (1) Jared Baeten (1) Jean-Michel Molina (1) Jim Pickett (1) Ken Like Barbie (9) Len Tooley (3) Los Angeles (4) Magpie Suddenly (1) maraviroc (1) Marc-Andre LeBlanc (4) Mark Hubbard (1) Medicaid (1) Mitchell Warren (1) My PrEP Experience (49) Myron Cohen (1) Nashville (1) Next-PrEP (2) Nick Literski (1) Obamacare (2) porn (1) Positively Aware (4) PowerPoint (3) pre-exposure prophylaxis (106) pregnancy (4) PrEP (122) PrEPception (4) prescription (11) Project Inform (3) Project PrEPare (3) Project RSP (7) protection (1) PROUD (1) provider (2) raw sex (1) Raw Sex Just Got Safer (2) receptive (1) relationships (15) research (14) safer sex (89) San Francisco (5) sex (12) sexual health (25) Simon Collins (1) Singapore (2) South Africa (1) Spanish (1) stigma (3) Sybil Hosek (2) talk show (1) tenofovir (1) Tokyo (1) training (2) Truvada (99) Truvada Track (1) USCA2014 (1) video (24)