[CASE STUDY] The Power of PrEP Advocacy, Achieving Individual and Macro Wins

[We hope this case study inspires us all to take action and demand the healthcare we need and deserve, whether it is access to PrEP or something else.]

Case Study: Getting Truvada as PrEP to those who need and desire it

As part of AIDS Foundation of Chicago's initiative to provide PrEP education and enhance PrEP awareness, it produces a website/blog called My PrEP Experience (right here!) The website provides a host of information and resources for health providers and potential users of PrEP, and catalogues stories submitted by users about their experiences using PrEP.

A university student sent an email to the My PrEP Experience moderators seeking support and advice.He had arrived for his check-up at the student health service center armed with the latest information about PrEP and its appropriate use. As a gay, sexually active man in an urban area with high rates of HIV, he assumed he wouldn’t have a problem getting a prescription because he knew that he was an appropriate candidate for PrEP. However, the primary care physician he saw was under the impression that she could not prescribe it – that the request had to be referred to the university’s infectious disease department.

The doctor told the student she would put a request to the infectious disease (ID) department for an appointment. Later she wrote him an email stating that the ID department will only prescribe PrEP to people in monogamous relationships with HIV-positive partners.

A savvy health customer, the student looked into his insurance coverage and found that it would indeed cover him for PrEP, but his plan restricted him to use his student health service center.

He was stuck....

So, what happens next? Read the rest of this case study for all the details. Spoiler alert - it has a happy ending, and is proof that individual and collective advocacy - community mobilization - gets results.

And please visit the newly revamped PrEPWatch run by AVAC, who, along with other allies across the country, collaborated with us on this specific effort. You will find an an excellent array of informational resources on PrEP, and is must-click.


 

[VIDEO] Honey LaBronx - "Girl, have you heard about PrEP?"

Mz. Honey LaBronx gives the children a PrEP talk.

 

NEW RESOURCE - Learn About PrEP Coverage on the Illinois Health Insurance Marketplace

Check out this fantastic new resource - "PrEP Coverage on the Illinois Health Insurance Marketplace" published by AIDS Foundation of Chicago - home to My PrEP Experience.

The document summarizes the monthly out of pocket cost a person can expect to pay for Truvada under each of the plans on the Illinois health insurance marketplace.

To learn more about the marketplace and health coverage, get started at www.GetCoveredIllinois.com.

Chicago doctor: "I don't always use condoms. And I don't always top. I will not give this up."

I have  a few young guys who need me, who engage me, and it feels so wonderful to be alive now.

via Chicago doctor

I am a 51 year old HIV negative gay infectious disease physician. 

When I began having sex at 19, I bottomed bare from the start with a few guys.  Then at 21 (in 1984), in one of my med school classes, the lecturer said that the development of an HIV test had allowed researchers to discover that for every one AIDS case in New York there were 100 infected.  I suddenly realized that there were more than 3 cases in Michigan, and that the bathroom stall at Mason Hall was not a good idea any more. 

So I tried to marry a guy, as I was kind of like that anyways.  That went 3 years.  Then I got dumped.  I tried Catholic celibacy for a year, then started going to bathhouses twice weekly to watch other guys fuck, but I was too frightened to do anything but oral. 

At work, I watched crop after crop of patients my age die.  Shocking horrible deaths.  Old college crushes one by one were memorialized, and then slowly forgotten   I went to therapists to try to control my behavior.  It worked well enough. 

I tried to marry a guy again at 30.  At 34, I found him crying in the bedroom, having just got his HIV diagnosis that day.  So, I learned we were not actually monogamous, and my escape-the-epidemic strategy had failed.  But it hadn't.  He had made me a top, and I was OK--negative despite the worst sore throat ever that week.  I helped get  him to an  undetectable viral load, took him to my best friend colleague, who put him on crixivan, zidovudine and lamivudine.  He is healthy, and with me, now for 21 years. 

Since I was 35, I have not used a condom when I fuck him, and he has never had a detectable viral load.   I let him come in my mouth, because I want that.  But we stopped having sex when I was 48.  I don't know why.  We love each other.  He is my mate in life.  He bakes me raisin bread, washes my clothes, lies beside me sleeping when I come back at midnight from hospital rounds. 

When I was 48, I saw the "monkey PrEP" data.  I began taking Truvada then, on my own. I took a half pill every day.  I did not tell my internist.  She refers patients to me, and is like a second mother.  I got labs for my cholesterol.  I took  leftover meds that had been returned, as there was always enough, because I take care of hundreds of HIV patients.

I discovered the internet at 49, and Grindr at 50.  I have more sex now than when I was 19.  I have  a few young guys who need me, who engage me, and it feels so wonderful to be alive now.  I don't always use condoms.  And I don't always top.  I will not give this up. 

Each of these relationships (ok some of them are, at best, encounters) makes me feel something-- vital.  I can't suppress these needs through work any more.  I am now officially on PrEP.  I am still negative.  I so hope the miracle of 2012 (when the FDA approved Truvada as PrEP) will save me, just like the miracle of 1996 saved the last few of my college friends. 

 

Unintended Side Effects Of PrEP

Damon L. Jacobs checks in with My PrEP Experience after 855 doses of Truvada as PrEP (more than 2 years.) Read earlier posts from Damon about his PrEP experience on this blog.

But what about the side effects?

Beginning the use of Truvada as PrEP on July 19, 2011 was not without some reservation.

Sure, I knew it could offer me an opportunity to feel more in control of my body and my health. Sure, I knew it could enable me to experience sexual intimacy without fear of HIV for the first time in my life. And sure, I knew it could enhance my ability to educate about safer sex practices as a therapist and an activist.

But what about the side effects? The prospect of having damaged kidneys did not thrill me in the least. Plus bone density reduction? I didn’t even know what that was! Nausea, diarrhea, abdominal cramping? Those were not the kind of adventures I welcomed. What about all the unintended side effects that nobody could predict? How was I going to deal with all that?

I was relieved to find during my first few weeks of taking Truvada that I experienced no physical side effects whatsoever. But what about the problems I wouldn’t be able to detect? What about the harm to my vital organs that I may not be able to sense? Was protection from HIV worth the risk?

For this reason, my doctor began the pattern of seeing me regularly, and drawing blood consistently. During the first year of using PrEP he saw me every three months. Beginning the second year he expanded it to every four months. By doing this he’s been able to monitor all my liver enzymes, kidney levels, and a bunch of other stuff that I don’t fully understand.

On November 20, 2013, I met with my doctor for my routine checkup. I had my blood drawn a few weeks earlier. As usual, this process was done with some trepidation on my part. Have I been damaging myself by using this medication? Am I willingly depositing toxic chemicals in my system? Am I sabotaging my organs for sexual pleasure?

After two years and four months (or 855 doses), my kidneys are fine. My organs are great. As a matter of fact, at age 42, I’m in the best shape of my life. How is that even possible?

As it turns out, taking PrEP has not only been a regular commitment to my physical health, but it has also prompted me to take active self-care measures in other areas.

Feeling protected from HIV helps me to feel more affirmative sexually. Feeling affirmative sexually gives me more confidence and energy. More confidence and energy leads me to exercise consistently and eat healthier. Exercising more and eating healthier gives me more strength and confidence. Having strength and confidence promotes improved mood, happier relationships, and more satisfaction in my professional life, which all positively impacts my physical health.

So have there been unintended side effects of taking Truvada the last two years and four months?

You bet!

It unintentionally has had an affirmative and healthy impact in every other area of my life. It unexpectedly has given me a sense of efficacy, empowerment, and freedom that has benefited my physical, emotional, and sexual well being.

If those are the side effects, I’ll be looking forward to a whole lot more!

----

Damon L. Jacobs is a Licensed Marriage Family Therapist in New York City, who specializes working with individuals and couples in the GLBT community. He has spent 17 years treating issues related to HIV/AIDS, stress management, bullying trauma, grief/loss, social alienation, suicide management, care-taking fatigue, substance abuse, domestic violence, and anxiety disorders. He created and monitors the "PrEP Facts: Rethinking HIV and Sex" page on Facebook. He is also the author of the new book "Rational Relating: The Smart Way To Stay Sane In The Crazy World Of Love." Please contact at Damon@DamonLJacobs.com. 

 

Pozilady - "Since knowing about PrEP, I have been able to help my son's father remain healthy"

by Pozilady
Washington, DC

I am in my mid 30's and have been diagnosed since I was 18. I've been undetectable for many years now. I've had quite a few relationships since my diagnosis. Some rejections as well due to my status, but my disclosure allowed me and those individuals to remain very close friends with an insurmountable amount of respect for one another.

Nevertheless,  the delight of my story is I have birthed a son who is over a year old now and HIV negative.  His father remains negative as well due to Truvada! (And prayer!!!)

Originally,  we used Truvada for him as post-exposure prophylaxis (PEP) due to a failed condom,  but as our relationship grew stronger we mutually decided to PLAN to have our miracle child. See, my "Inf. Disease" doctor would always encourage me to have a child, stating "you are healthy,  what are you waiting for?" So, my partner and I talked it over with my OB/Gyn doctor and asked his advise on what to do in case of a mishap and/or when trying to conceive.  They both led us to Truvada.

Since knowing about PrEP, I have been able to help my son's father remain healthy,  it's is absolutely wonderful for many reasons.  It decreases the burden of possible guilt should one become negative on a count of me. Also, if we decided not to stay together as a couple we both could move on with our lives, and not feel forced to stay together because of a status.

Disclosure is hard, but it is a MUST. Having knowledge of your status, regular doctors visits and labs, keeping up with your numbers, staying on your meds and finally educating your partner is empowering!

 

VIDEO: "Love somebody" - Dakota is back with a vid on his first PrEP day

[Read Dakota's blog from yesterday - Alabama firefighter, paramedic and "pitcher" goes on PrEP.]

In the video, Dakota talks about all kinds of stuff regarding this first day on PrEP. Including having a rather "invasive" checkup before hand - with swabs going in all kinds of orifices. He complains about awful PowerPoints used for patient education. (can we get an AMEN?)  And he talks about how he has always made decisions that were appropriate to him and his life - not paying heed to the judgments of others.

Thanks for sharing Dakota! We look forward to following your journey ;)

Alabama firefighter, paramedic and "pitcher" goes on PrEP

by Dakota
Birmingham, Alabama
(with a shout out to the UAB 1917 clinic

I have often felt that I am missing the opportunity to have a full sex life and "catch" when the time is right.

About 2 years ago I started hearing about PrEP. I only gave it passing interest. As a health care provider (I'm a firefighter and paramedic), I was educated on PeP and even had to go through a course following a needle stick.

But for some reason didn't look into PrEP very much.

Recently I began thinking about it and finally made an educational appointment to learn more. After about an hour and half with a health educator I found out that my insurance does cover it and it's really not even very expensive. I have my first clinic appointment in a few days to be tested for HIV and will go to a group education session and then see a provider to get my prescription.

I'm really looking forward to the security this will provide. Candidly I will admit that I do not use condoms. As a "pitcher" I've always considered it a safer practice but have often felt that I am missing the opportunity to have a full sex life and "catch" when the time is right.

My decisions about condoms are personal and appropriate to myself, I make no apologies for my decisions and I respect opposing decisions. PrEP makes it possible to still have a layer of protection without the layer of latex.

I'm also looking forward to being able to help spread education about PrEP. I hope that everyone can find a strategy that works best for them.

 

[SLIDES] Nashville Gets PrEPared

Last night in Nashville, advocates came together for "Project PrEPare" - a forum including a group of community health advocates that came together at OutCentral to try and provide answers to the community’s questions about a new HIV prevention strategy called pre-exposure prophylaxis, also known as PrEP.

Below are the slides Mark Hubbard - a fierce and super smart prevention advocate - presented to an audience of more than 50 folks from throughout Tennessee. More info on the event here.

Project PrEPared Nashville - The Road to PrEP from tnmarkyBNA

¿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.

 

What is PrEP? Helpful info page from Fenway

The Fenway Institute has launched a very helpful info page on PrEP with simple fact sheets and short, concise, clear videos to help people better understand PrEP.

The video below is great start, laying out the basics in 90 seconds. Click here for other videos and info resources on PrEP from Fenway.

 

Poppy's Story - How A Magnetic Straight Couple Utilized PrEP for Conception

"When it came time to announce our pregnancy, we decided that we just wanted to come forward and tell the truth. We felt it was such a miracle that we were even pregnant that this child, and this process, deserved our honesty. So we told everybody. I took Truvada for a year and a half - and it worked."

A year and a half ago, My PrEP Experience featured a story from an HIV-negative woman, who we will call "Poppy", married to an HIV-positive man. The sero-discordant (magnetic) couple wanted to have a baby, and after a journey investigating various options that lasted more than a decade, Poppy chose to take Truvada as PrEP, to protect her from contracting HIV while still allowing her to conceive.

And guess what?

She stayed HIV-negative and got pregnant. Check out those toes up left - and that cute little mug to the right - to see the result of that pregnancy.

In this recording, Poppy tells her very compelling PrEP experience - from the beginning to a beautiful baby daughter, with features and characteristics from both her parents. Please take a few minutes to listen.

The recording is actually an excerpt from a webinar conducted on October 28, 2013 called "PrEP-ception: Sero-discordant couples using PrEP to reduce HIV transmission risk during pregnancy."

This webinar, the second in a series of webinars by the US Women and PrEP Working Group, discussed the possibilities and challenges associated with serodiscordant couples using PrEP to help them achieve pregnancy safely. In addition to a Q&A period, the webinar consisted of the following:

• Introduction: Overview of PrEP and the Role of the Working Group
  Dazon Dixon Diallo, MPH, Founder and President, SisterLove, Inc. 
• Defining the Need for Safer Conception Options: The Role of “PrEP-ception”
  Shannon Weber, MSW, Director, Special Projects, National HIV/AIDS Clinicians' Consultation Center, Bay Area Perinatal AIDS Center Coordinator
• A Framework for the Integration of PrEP
  Erika Aaron, CRN, Drexel University College of Medicine, Division of Infectious Diseases and HIV Medicine
• One Mom's Story
  Poppy

Click here for presentation slides, an audio link, and more information.

Click here for Poppy's recording.

[New CDC brochure] Take Charge - Talk to Your Doctor About PrEP

Are you HIV negative but worry that you may become HIV positive?

The U.S. Centers for Disease Control and Prevention have just released a super handy new brochure, designed for individuals who want to talk to their doctors about PrEP.

The simple, brief document includes various web resources and tips to help you prepare for your visit to the doc, plus things to do and ask during and after your visit.

 If you are thinking about PrEP for yourself, or if you have a friend or loved one who is considering PrEP, this is definitely something to check out.

 Download it here.

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.

 

Problems getting PrEP? Let us troubleshoot with you!

Have you run into a problem getting a prescription for Truvada as PrEP? Has your doctor refused to write you a prescription? Have you run into problems with your insurance coverage?

Let My PrEP Experience help troubleshoot. Email us at myprepexperience@gmail.com and we will get back to you ASAP.

We have helped others with issues like these - and would love to help you as well.

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.

[LOVE] How to Make the ACA T’Werk for You

Oh…You said you don’t have Healthcare?

A series of clever, funny, and informative GIFs about Obamacare/Afforable Care Act courtesy of the Young Gay Black Men's Initiative.

The ACA was designed to decrease the number of uninsured Americans and reducing the overall costs of health care. Remember this is about you what is going to keep you healthy and living longer. Always keep that in mind as you go through this process.

This is really a gift to yourself and should be treated as such.

Check them out. Gigglz and learnz.

 

[PICS] Raw Sex - Did It Just Get Safer?

Prince Magneto Ebony and Fatha Memphis Khan, and the  House/Ball community in Chicago, held a talk show/mini-ball on PrEP October 17.

Called "Raw Sex - Did It Just Get Safer?" - the talk show featured a researcher, an academic, and a young PrEP user who shared information about and personal experiences with Truvada as PrEP. The mini-ball featured two cash-prize categories, OTA Realness and OTA Performance.

Below  are some pics from the event. Check out the rest on our FB page.

More pics here.

 

Thanks to our collaborators - University of Chicago SSA, Care2Prevent, Project PrEPare, National Youth Pride Services, Project Ready, Set, PrEP!, My PrEP Experience, the CORE Center, and AIDS Foundation of Chicago.

 



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 (^_^).

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?

 

[VIDEO] Marcus Makes the Decision to Start PrEP With His Doc

[Video courtesy of Project Inform]

"I know I'm supposed to use a condom every time. I've heard this like all my life. But if I'm honest, I don't always do it - whether it's him or me."

Marcus is just starting out on his own. His own apartment. Interested in music. Getting out on the dating circuit. Here, Marcus talks about not always using a condom and why PrEP may be right for him because he wonders if he can trust what the other guy says about his status.




Project Inform is a great resource for info on PrEP. Click here.

[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.

Audio.

Dra. Pollock: Hola, me llamo Dra. Lealah Pollock.  Soy una doctora de medicina familiar en el Centro de Salud Familiar en el Hospital de General de San Francisco.  Estamos aquí el 10 de setiembre 2014 en la oficina de BAPAC en el Hospital General de San Francisco.  Estoy aquí con Carolina y con su bebé para hablar de su experiencia tomando PrEP como parte de su cuidado anticon…, pre-conceptivo, hem, y aqui en el Hospital General de San Francisco ofrecemos PrEP y cuidados de salud reproductiva comprensiva [integral] como parte de cuidados primarios, parte de salud general.  Entonces, hola Carolina ¿cómo estás?

Carolina:  Muy bien, Dra. Pollock. 

Dra. Pollock: Entonces, para empezar ¿cómo te conectaste con el Centro de Salud Familiar y con BAPAC?

Carolina: Yo estaba en tratamiento con mi clínica en Castro Mission y yo le comente a mi doctora que yo pues quería tener un bebé, y ellos me, ah, me dieron información sobre BAPAC en el Hospital General de San Francisco, y fue por eso que yo vine aquí a este hospital a pedir información.  Bueno ellos me llamaron a mi para poder, para, para, para darme la información sobre la PrEP, y, este, fue, cuando ellos me mandaron a Blue Team (cuidados primarios) de San Francisco, general, del Hospital General y fue cuando conocí a este personal que me ayudaron a usted Dra. Pollock, en especial, y este, fueron los que me guiaron y me dieron más información sobre poder yo quedar embarazada  con una persona de HIV positivo.

Dra. Pollock: Muy bien. ¿Y cuando le mencionaste a tu doctora, ahi, fue la primera vez que tú y tu esposo habían preguntado si pudieron quedarse embarazados?

Carolina:  No, yo ya había preguntado en mi clínica anteriormente, pero, pues ellos me decían que era imposible, y fue aquí donde yo encontré, pues, la respuesta correcta, y ustedes fueron los que me ayudaron a tener esa respuesta.

Dra. Pollock: Y, entonces, habías buscado información anterior, anteriormente también.

Carolina:  Sí, yo busqué mucha información y siempre fue imposible, ellos me decían que el único recurso podía ser la inseminación artificial, y que tenían que limpiar el semen de mi esposo, pero, pues, nosotros no lo queríamos así, nosotros queríamos algo, pues, natural y se nos hacía imposible todo, y gracias a Dios, aquí se nos dio suma información y esta el fruto de nosotros aquí.

Dra. Pollock: Muy bien! Y ¿Cómo llegaste a la decisión de tomar PrEP?  Yo me acuerdo que cuando primer vez te conocí, tu esposo no tenia el virus indefectible en la sangre, todavía tenía virus que se pudiera detectar en la sangre, y tomamos un poco tiempo hablando de la posibilidad de PrEP, entonces ¿por qué al final decidiste tomar PrEP?

Carolina:  Porque, ah, bueno, decidimos toma…, decidí yo pues, tomar PrEP porque aquí en este hospital le ayudaron al él a que su virus fuera indefectible, primeramente y yo me sentí más segura, y, este lamentablemente, hay mucha mujeres que no corren con la posibilidad de tener toda la información adecuada sobre la PrEP, pero, aquí están, yo siento que aquí en este hospital están los mejores doctores y que te pueden dar la información necesaria y es por eso que yo tomé ese procedimiento y gracias a Dios todo funcionó. 

Dra. Pollock: Y gracias a ti, pero tú fuiste quien tuvo la fortaleza de pedir información y de tomar la decisión para tomar PrEP y para tener a un bebé, y un bebe tan linda…

Carolina: …saludable…

Dra. Pollock: Y ¿tuviste efectos secundarios de la Truvada, de la PrEP?

Carolina:  No! No tuve ningún efecto secundario y yo, se los aseguro, y creo que hay muchas mujeres que lo deberían de usar como un método, pues nunca sabemos, muchas personas no queremos preguntar y sí, se puede, se puede quedar embarazado y no pasa nada.  A mi no me pasó nada y estoy sumamente contenta y estoy preparada para poder tener otro bebé

Dra. Pollock: Qué bien! en el futuro.  Y ¿cómo fue tu experiencia con tu esposo y alguien más en tu mundo, que supo que estabas tomando la PrEP?

Carolina:  No.  Pues, cada quien sabe, bueno, yo en lo personal, pues mi vida es mi vida y yo tomo mis propias decisiones, y pues nadie de mi familia, pues, solamente su mamá, su papá y unos hermanos saben que él tiene, este, esa enfermedad. No es necesario que lo sepa toda su familia si tu quieres, lo puede saber, sino, pues, tú, tú puedes tus propias decisiones, a quiénes decirles y aquí sabes que la información es confidencial

Dra. Pollock: Verdad, y ¿tu esposo te apoyó en tomar la PrEP?

Carolina:  Sí, él me apoyó, pues los dos queríamos un bebé, siempre soñábamos con tener un bebé…y allí está!

Dra. Pollock: Y ¿tienes algunos consejos para otras mujeres que están considerando tomar la PrEP o están considerando tener a un bebé con una pareja con VIH?

Carolina:  Sí, siempre y cuando tengan los proveedores específicos sobre lo que, el caso que ustedes tengan y de lo que estamos hablando, mientras ellos tengan unos proveedores que les puedan dar la información necesaria y adecuada, yo mi  consejo es que sí se puede y pueden tomar sus propias decisiones y averiguar con especialistas como los que yo tengo aquí en San Francisco en el Hospital General.

Dra. Pollock: Muy bien.  Bueno, gracias Carolina por hablar con nosotros hoy y por tener, y por compartir su experiencia con nosotros.

Carolina:  Gracias a ustedes por proveerme esta información y gracias al Hospital General porque se logró lo que queríamos, y sin ustedes, quizás no hubiera sido posible tener este bebé que tenemos ahora con seis meses y con su peso adecuado, y saludable.

Audio.
 

[VIDEO] Voices of Choice - Brad from San Francisco on Being in the iPrEx Open Label PrEP Trial

"I fell in love with someone who is HIV-positive..."

In the video below, Brad from San Francisco discusses his participation in the iPrEx Open Label Study and taking Truvada as a way to prevent HIV infection.

The iPrEx trial was the first study to show that an antiretroviral drug (ARV) - normally used to treat people living with HIV - could also be used to prevent HIV among people who are HIV-negative.

In July of 2012, the FDA approved the ARV drug Truvada for the prevention of HIV.

 

 

PrEP Study NOW Recruiting in LA, Long Beach

Research Study Information (in Spanish below)

Are you a man interested in taking medication that could reduce your risk of getting HIV (Pre-exposure Prophylaxis, otherwise known as PrEP)?

Are you HIV-negative or know of someone who is HIV-negative?

Are you sexually active with men?

Are you at ongoing risk for acquiring HIV?

If so, you may qualify for a PrEP study at LABioMed at Harbor-UCLA and the Long Beach Health Department that is looking to see if text messaging reminders can improve taking the study medication according to schedule.

If you are interested in participating in this study, contact Angela at (310) 222-3848

-------------

Estudio de Investigación

Es usted un Hombre interesado en tomar medicina que le reduzca el riesgo de adquirir VIH (Profilaxis para evitar infección de VIH, también llamado PrEP)?

Es usted VIH-negativo o conoce a alguien que es VIH-negativo?

Es usted sexualmente activo con hombres?

Esta usted en constante riesgo de adquirir VIH?

En este caso, usted podría calificar para un estudio de PrEP que se lleva a cabo en LABioMed/Harbor-UCLA y el Departamento de Salud de Long Beach. El estudio esta evaluando si los mensajes de texto ayudan a mejorar la constancia a tomar medicinas durante el estudio.

Si esta interesado en participar, favor de llamar a Ángela al
(310) 222-3848

 

[VIDEO] Alejandro on Using PrEP and His POZ Partner

[Video courtesy of Project Inform]

Alejandro has been with his partner for several years. They're a mixed status couple ... Alejandro is  HIV-negative, and his partner is positive. Here, Alejandro describes some of the things he and his partner thought about when they were deciding whether or not to use PrEP.



Project Inform is a great resource for info on PrEP. Click here.

Learning Lessons and Taking Action to Keep Myself Safe - Jermaine Brooks on PrEP

by Jermaine Brooks, via Positively Aware's recent "Let's Talk about PrEP" issue 

What would life be like if we didn’t make mistakes?

Many of us try to map out our lives in hopes that things will go according to plan. The truth is that no matter how hard we try, there will always be something that catches us by surprise. A surprise is what actually started my journey with PrEP.

It was 2009, I had just started college and was living on my own for the first time. So as not to get too personal, let’s just say that it was a time of “finding myself” and much sexual exploration. Things were going pretty well for me and, for the most part, I would say that I was growing into a responsible young man (especially compared to what some of my peers were doing). But no one is perfect, and occasional slip-ups with condoms led to an “STI scare” that completely changed everything for me.

I share everything with my uncle, Keith Green (well…almost everything). At the time, he was working on a study about PrEP at the county hospital. When I told him about my scare, he suggested that I consider taking part in the study.

"Just weighing the options can teach one how to relate to their body and treat it with respect."

Of course I had many questions about how this actually worked and if I would be in any danger if I did start taking the drug. My uncle told me what he knew about PrEP, all of the benefits and potential challenges, and suggested that I speak with the study nurses for more information. That led to even more questions!

Mildly apprehensive but very intrigued, I decided to enroll in the study and to continue to educate myself about PrEP in the process. When I first started, they were still testing the drug and some people were actually placed on a placebo. But I knew from the very beginning that I was actually receiving the real thing.

 Read the rest here.

[Chicago October 17] Raw Sex Just Got Safer?

The PrEP Experience Talk Show and Mini Ball 

Join hosts Prince Magneto Ebony and Father Memphis Khan, and expert guests, to talk about the pill that can actually prevent HIV (called PrEP). Ball categories (with cash prizes) include OTA Realness and OTA Performance.

Light refreshments and appetizers. And YOU.

Brought to you by National Youth Pride Services, Care2Prevent, and Project RSP!

CLICK  for more info and to RSVP.

WATCH: Famous Chicago vlogger Ken Like Barbie explains PrEP in this short video.

[VIDEO] Voices of Choice - Amir from San Francisco on Being in the iPrEx Open Label PrEP Trial

"It's good, but it's tedious..."

In the video below, Amir from San Francisco discusses his participation in the iPrEx Open Label Study and taking Truvada as a way to prevent HIV infection.

The iPrEx trial was the first study to show that an antiretroviral drug (ARV) - normally used to treat people living with HIV - could also be used to prevent HIV among people who are HIV-negative.

In July of 2012, the FDA approved the ARV drug Truvada for the prevention of HIV.

 

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)

Truvada can prevent HIV. So why are so few gay men taking it? - via OUT

by Tim Murphy, for OUT Magazine

The gay 40-something well-known New York City doctor with many gay patients — let’s call him Dr. John — can barely talk freely about what he’s doing. “It’s telling, how reluctant I am to talk about this, even anonymously,” he says. “This isn’t being talked about in our community at all.”

The subject causing such anxiety for Dr. John is an oval blue pill called Truvada. He takes it once a day — not to treat HIV, but to keep him from getting it. It’s even covered by his insurance, thanks to a decision by the FDA last year to approve it as a prophylactic against HIV. That approval followed a groundbreaking study in 2010, called iPrEx, that found that HIV-negative gay men who faithfully adhered to a one-a-day regimen of Truvada reduced their risk of getting HIV by more than 99%.

Those findings, which HIV specialists had been keenly awaiting for several years, were enough to make Dr. John talk to his own doctor and start the regimen himself. “I don’t want to become HIV-positive,” he says. “But I don’t love using condoms.” Sexually active with multiple partners, Dr. John admits he avoided condoms about 20% of the time. He was tired of stressing constantly over whether he’d gotten HIV. “Even if my sex was relatively safe, I would have long periods where I’d be freaked out that something had happened.”

Since he started taking daily Truvada, or PrEP (pre-exposure prophylaxis), as the regimen is called, Dr. John has remained HIV-negative and has experienced no side effects from the drug. “My sex life has been much less anxiety-provoking,” he says. “Now if I don’t use a condom, I feel like there’s a safety net.”

So why isn’t he shouting about PrEP from the rooftops? Partly, he says, because he doesn’t want people to think that because he’s a doctor, he’s endorsing PrEP for everyone: “There’s a difference between giving medical advice and making individual choices.”

But his reluctance is deeper than that. He also doesn’t want to be judged for eschewing condoms from time to time. “Gay men talking about not using condoms is really stigmatized,” he says. “Most of us have never known sex without condoms or without threat of a ‘deadly disease.’ ” But he adds passionately, “I think it’s a lot to ask an entire generation of gay men to use condoms forever.”

Read the rest.



RESEARCH OPPORTUNITY FOR YOUNG GAY MEN IN THE U.S.

Are you a young gay man living in the United States between the ages of 15 and 17? Are you interested in new methods of preventing HIV, like PrEP?

Project PrEPare is an innovative HIV prevention study designed to explore the safety, acceptability and feasibility of PrEP among young gay men and other men who have sex with men who are at risk for HIV infection in the United States.

The study is taking place at clinical sites across the U.S. in Los Angeles, Philadelphia, Chicago, New Orleans, Boston and Denver. Click here to quickly check if you are eligible to participate.

More information about the study and city-specific contact information can be found on the Project PrEPare website.