Your Experience is a Gift

We feature real stories from people who have chosen to use PrEP as one way to protect themselves from HIV. If you have used or are using PrEP, we invite you to share your PrEP experience via audio, video, or in writing. Send video or audio links and/or text to myprepexperience@gmail.com and we will post them here. You can include your name, or you may contribute your story anonymously. This blog also contains helpful information on PrEP for users, potential users, and providers. Look for the links in the sidebar.

We have not heard of any insurance company or any Medicaid program outright denying coverage of Truvada as PrEP. Some companies and programs are requiring prior-authorization, however, which requires paperwork to be filled out. And the type of insurance coverage you have, including prescription drug benefits, will determine the cost to you as the consumer. To date, we have seen the biggest barrier to obtaining PrEP from providers who are unwilling to write a prescription.

If you have trouble getting a prescription for Truvada as PrEP from your provider, or getting a PrEP prescription covered by insurance or Medicaid, we are happy to troubleshoot with you. Send us an email to myprepexperience@gmail.com.

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
Singapore


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 www.drtanandpartners.com

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.


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