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, 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?

 

Tuesday, September 30, 2014

[AUDIO] Magnetic Love and Making Healthy Babies - Carolina's story



This interview was conducted in Spanish. The Spanish transcription follows the English translation below. Click here for the audio link (in Spanish) and have a listen.

Folks interested in more English/Spanish PrEP and PrEPception information are invited to visit the PRO Men page of the BAPAC website.


Dr. Pollock: Hi, my name is Dr. Lealah Pollock.  I am a family medicine physician in the Family Health Center at San Francisco General Hospital.  Today, September 10th, 2014 we are at BAPAC’s offices at the San Francisco General Hospital with Carolina and her baby to talk about her experience using PrEP as part of her comprehensive care. At the San Francisco General Hospital we offer PrEP as part of primary care, comprehensive sexual health care.  So, hello Carolina.  How are you?

Carolina:  Very well Dr. Pollock.

Dr. Pollock: So, to commence. How did you get in touch with the Family Health Center and with BAPAC?

Carolina: I was receiving care at the Castro Mission clinic and asked my physician that I wanted to have a baby.  They gave me information about BAPAC and the San Francisco General Hospital. That is how I came here to the hospital to request information.  Well, they call me to give me information about PrEP and referred me to the Blue Team (primary care clinic) at the San Francisco General Hospital and I met the staff that helped me, especially you Dr. Pollock, they gave me guidance and more information on how to get pregnant from an HIV positive person.

Dr. Pollock: Very well.  And when you told your doctor. Was it the first time that you and your husband asked about getting pregnant?

Carolina:  No.  I had already asked my doctor at the clinic I used to go to, but they always told me that getting pregnant was impossible. It was here where I found the right answer.  You helped me to have that answer.

Dr. Pollock: Had you looked for information before that?

Carolina:  Yes.  I looked for a lot of information and it was always impossible.  They told me that the only way to get pregnant was insemination and that they had to “clean” my husband’s semen.  But we did not want that.  We wanted to get pregnant in a natural way.  It was impossible.  Thanks God that I was given the information here and here you have the results. 

Dr. Pollock: Good! How did you decide to take PrEP? I remember the first time I met you; your husband’s viral load was still detectable.  He did not have an undetectable viral load, and we took some time to talk about PrEP as a possibility.  So. Why did you in the end decide to take PrEP

Carolina:  I decided to take PrEP because the physicians in this hospital helped my husband’s viral load to become undetectable, so I felt more comfortable.  Unfortunately, there are not many women that have the possibility to have all of the information about PrEP, but I feel that in this hospital you have the best physicians that provide the necessary information and that is why I made the decision and thanks God all worked out well. 

Dr. Pollock: And thank you, but you were the one that had the strength of asking for information and make the decision of taking PrEP, and having a baby.  And the baby is so beautiful…

Carolina: …healthy…

Dr. Pollock: Did you have any adverse events taking Truvada or PrEP?

Carolina:  No, I did not have any adverse event.  I think that women should use it as a method.  We never know, many people do not want to ask, and yes, you can get pregnant and it is safe.  I did not have anything and I am very happy and prepared to have another baby.

Dr. Pollock: Good, in the future.  How was the experience with your husband and in your world that knew you were taking PrEP?

Carolina:  Well, personally, my life is my life and I make my own decisions and nobody in my family except my husband’s mother, father and few brothers know that he has this disease.  It is unnecessary that all of your family know about it if you do not want to.  You can make your own decisions, who you share it with.  And here, you know that this information is confidential.

Dr. Pollock: True.  Did your husband support you to take PrEP?

Carolina:  Yes, he supported me since both of us wanted to have a baby.  We dreamed with having a baby…and there she is!

Dr. Pollock: Do you have any piece of advice for other women that are planning on taking PrEP or having a baby with an HIV positive partner?

Carolina:  Yes, as far as they have health providers that are knowledgeable about it and that can provide them with the necessary information.  My advice is that if you can make your own decisions and find a specialist like the ones I have here at the San Francisco General Hospital.

Dr. Pollock: Very well. Thank you to talk to us today and share your experience.

Carolina:  Thank you for giving me this information and thanks to the General Hospital because we got what we wanted and without your support it might have not been possible to have this baby that we have today, six months old with adequate weight and healthy.

Click to the next page to read this interview in Spanish. Click here to listen to it.

Sunday, September 14, 2014

VIDEO: SF Gay-mer Jeremy on why he's on PrEP

I don't think being on PrEP means I'm going to go out and fuck every single person in the world.... Maybe I will, maybe I won't. I don't know.

via Jeremy, San Francisco
[who sent us this lovely post and video a few weeks ago - thanks for sharing Jeremy!]

I posted this to a Facebook page dedicated to PrEP facts and experiences and thought I would share with your blog.

After journeying through ill-spoken insurance verbiage to get on PrEP (and after doing extensive research) I was finally able to cut through all of the wrong information to find out that PrEP would be covered and would not be as expensive as I was originally told.

 I live in San Francisco but am originally from a small town in the Central Valley and when trying to discuss PrEP with folks there (in particular a cousin in a mixed status relationship) I have found it to be daunting and almost fruitless. I came to the realization that the folks I was discussing it with were, in essence, afraid of information and facts; throw too many numbers their way and they begin to get intimidated.

Admittedly, conversations about HIV and sexual wellness here in the city are far easier to have. So I thought I would document my PrEP journey as an every-man (which I am) during milestones.

Today I hit my 7th day on PrEP which for most is the day where Truvada is working at maximum efficacy.

So here's my video! -=O)

Tags