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.

Tuesday, November 18, 2014

¿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.

 

Thursday, November 6, 2014

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.

 

Monday, October 27, 2014

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.






Wednesday, October 15, 2014

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 (^_^).

Thursday, October 9, 2014

Todd in Palm Springs - "I am disappointed that people are not yelling from the rooftops about this medication!"

by Todd
Palm Springs

I met the most wonderful man in January and he was hesitant to have sex. After about 3 weeks he told me he was positive. It didn’t affect my feelings for him and he was so used to rejection. Over the past 9 months I have fallen in love with this man.

 I have a great doctor that is gay (I live in Palm Springs) and started hearing about Truvada. I started taking it about 7 months ago, no real side effects except for lip numbness which may have been a food allergy.

I am disappointed that people are not yelling from the rooftops about this medication!

He has been positive for 8 years and is “undetectable." Between PrEP and his undetectable status I feel we are safe. 10 years ago, someone with HIV would’ve been off the table for me to be honest. Judge as you will but I am sure many of you agree.

I work in healthcare and have my doctorate but remain scared like any other gay man. I came out in 1983, same years as AIDS. It has been present in my entire adult life. I have been in three 7-year relationships with negative partners and now venture off in singledom. I am in my mid 40’s and  live in a town where 40% of the gay men are positive. My reality.

I tell anyone that will listen about Truvada but I want to always be respectful of my boyfriend's status. It really is nobody's business but at the same time I want to share our “Truvada” secret for their benefit.

Is anyone else in my shoes? Stuck between a rock and PrEP?

 

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