[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.

 

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. 

 

[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

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.

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.

[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.

 



[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.

[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.

 

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.

[VIDEO] Figuring out how PrEP fits into your life

[Video courtesy of Project Inform]

Jonathan recently broke up from a long-term monogamous relationship. He's been a little depressed but he's also chatting online and dating quite a bit. Condoms aren't always used.

Listen to Jonathan talk about how PrEP has helped ease his mind as he's working through this new stage in his life. And hear from other advocates/experts about the use of PrEP.



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

[VIDEO] Voices of Choice - Lucio from Rio de Janeiro Discusses Being in the iPrEx Open Label PrEP Trial

In the video below, Lucio from Rio 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.

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.

Recruiting Young Gay Men in 6 U.S. Cities for Important PrEP Study

Condoms are not the only way you can have safer sex! Are you a young gay man between the ages of 15 and 17? 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.

“Considering that young men who have sex with men continue to be disproportionately affected by the HIV epidemic in the United States, we are excited to gather youth-specific data on PrEP - the newest addition to the ‘toolbox’ of HIV prevention interventions,” said Dr Sybil. Hosek.

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

The New Revolution: Bob Grant Talks PrEP in Special Issue of Positively Aware

by Robert Grant, MD, MPH (via Positively Aware's recent "Let's Talk about PrEP" issue)  

"PrEP is a proven concept. A single tablet that contains two medications originally approved to treat HIV/AIDS, tenofovir and emtricitabine (brand name “Truvada” in the United States), was approved to prevent sexual transmission of HIV by the Food and Drug Administration (FDA) in July 2012. The Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO) have issued guidelines for the use of PrEP. The medication is already available in generic form to people living in the poorest countries of the world."

 

Antiretroviral therapy has revolutionized care for people living with HIV/AIDS by prolonging life and restoring health, preventing transmission to uninfected partners, and preventing tuberculosis disease. These same medications can be taken by HIV-negative people with the goal of staying free of HIV. The combination of highly active antiretroviral interventions for both HIV prevention and treatment has led to unprecedented optimism about the prospect of ending AIDS.

The preventive use of anti-HIV medicines by HIV-negative people is called post-exposure prophylaxis (or PEP) if the medicines are started after sex or a needle stick that could lead to HIV transmission. Pre-exposure prophylaxis, or PrEP, is when medicines are used before and after possible exposures to HIV infection.

Read the rest here.

[VIDEO] Voices of Choice - Garland from Chicago Talks About Being in the iPrEx Open Label PrEP Trial

In the video below, Garland from Chicago 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.

Thanks to the iPrEx team, My PrEP Experience will be sharing a number of videos from iPrEx study participants over the coming days and weeks. Check back often, or like our partner Project RSP! on FB and follow along with all the new videos that way.

If YOU are taking Truvada as PrEP, we'd love to hear your story. You can share your experience in a video, or you can write something up. Whatever you want to do - we want to hear your experience - whether taking Truvada as PrEP was a good experience or a bad experience - or anywhere in between. Email myprepexperience@gmail.com and let us know!

Paying for PrEP - Helpful Info for People/Providers

by Enid Vazquez, via Positively Aware's recent (an excellent resource) "Let's Talk about PrEP" issue.  

And be sure to check out this new fact sheet on payment strategies for both PrEP and PEP published August 21 by NASTAD:  "Pharmaceutical Patient Assistance Programs and Co-Payment Assistance Programs for PrEP and PEP."

Asked if he’s had any problems getting insurance companies to pay for HIV PrEP, HIV specialist Tony Mills, MD, of Los Angeles, replied, “None so far.”

In Chicago, Michelle M. Agnoli, RN, with the Midwest AIDS Training and Education Center (MATEC), said, “There’ve been no problems that I’m aware of. None.”

And Shannon Weber, MSW, of the Bay Area Perinatal HIV Center (BAPAC) out of San Francisco General Hospital, said, “I’ve only heard one report of it not being approved. Generally I’m hearing positive responses about access.”

But concern about how to pay for PrEP is the number one question Weber gets when she makes presentations about the new HIV prevention therapy. Doctors will tell her “it’s hard to get [insurance] coverage,” yet when she asks them if they have prescribed PrEP, none of them have.

Learn more about paying for PrEP here.

 

 

From Personal to Professional: Alan Johnson writes about his PrEP experience

 by Alan Johnson, MPH, excerpt from Positively Aware's recent "Let's Talk about PrEP" issue  

"I attribute my high adherence rate to knowing that PrEP will only work if you take it. I always carry a few doses with me and my iPhone alarm always reminds me to take my medication."

I first heard about PrEP at a community meeting a couple of years ago, after it was shown to be an effective prevention method in human studies. I decided to look into PrEP further when the FDA approved the prescription drug Truvada as prevention for those who are at high risk for acquiring HIV. In yet another community meeting soon after FDA approval, I learned that some insurance companies were planning to cover most of the cost for treatment. I also learned that patient assistance programs from the maker of the drug, Gilead Sciences, have been extended to those taking Truvada as PrEP. 

Though I have a background in public health (primarily sexual health research and direct prevention and care services), I found that the more I heard about PrEP, the more questions I had.

If I was interested in actually taking PrEP, how would I afford it?

Was I even truly at “high risk” for acquiring HIV?

Would I have adverse reactions to the meds?

How would I overcome my internalized fear and the stigma associated with actually reaching the pharmacy counter and receiving the prescription?

What if someone I know sees the Truvada label laying around my apartment and Googles it?

Would they think that I was HIV-positive?

Read the rest here. 

MUST READ: Let's Talk About PrEP - Special Issue on PrEP from Positively Aware

Check out this special summer issue from Positively Aware on PrEP. Contents include personal stories from real people using PrEP, updates from the world's leading scientists, and tips on how to pay for PrEP. Good stuff, must read!

Click here to access the full issue.

PrEP Demo Project for Black Men Who Have Sex With Men - LEARN MORE

Today, after a great deal of advocacy, planning, and preparation, the HIV Prevention Trials Network (HPTN) has begun the process of screening men for potential enrollment in the landmark study, HPTN 073. 

HPTN 073 is a demonstration study evaluating pre-exposure prophylaxis (PrEP) Initiation and adherence among HIV negative Black men who have sex with men (BMSM) at three of the HPTN’s United States research sites.

Men in the Chapel Hill, NC area will be enrolled through the University of North Carolina (UNC), in Los Angeles, CA through the University of California at Los Angeles (UCLA), and in Washington, DC through the George Washington University (GWU).   

#PrEPChat

Twitter Chat and Webinar August 14

There is a Twitter chat scheduled for Wednesday, August 14, 2013 to learn more. The event will start at 1PM ET with the chat hosted on HPTN’s @HIVptn Twitter page. That same day, at 2PM ET, there will be a webinar on this topic as well. Register for this free webinar here.

Watch a short video about HPTN 073 here.

You can also read the fact sheet on HPTN 073 embedded below.

HPTN 073 Fact Sheet 

(Part One) Can gay men involved in HIV work ever imagine using PrEP?

via Positive Lite, by Marc-André LeBlanc

 

"Past, present and future! In the past, going through particular 'slutty' phases, serodiscordant relationships, and 'party' phases could definitely been safer with the addition of PrEP. The anxiety of near misses and testing around those periods would also have been toned down substantially. Presently, and moving forward I am considering PrEP as another tool in my arsenal of safety that will also take away from testing anxiety in the future, especially if I partake in occasional high risk activities."

In this article, I focus on whether gay men involved in HIV could ever imagine using PrEP. In my next article, I will focus on their concerns and hopes for PrEP. This article presents gay men’s opinions about PrEP. It does not claim to present facts about PrEP. As such, factual errors might be included in the opinions expressed, so check out the resources listed at the end of the article for more information about PrEP.

These are all gay men that I know, so they are mostly from Canada. Many people would have different answers, I imagine—gay men in other countries, gay men who are not involved in HIV, and people other than gay men. But since the guys I asked are more likely than most to know about PrEP, I was curious to know their thoughts.

I was quite amazed at the response—half of the 60 people I approached responded to my brief three question online survey, including 17 HIV-negative guys and 13 HIV-positive guys. I told them they could respond anonymously or let me know that they had responded to the survey. Among the 30 guys who responded, 19 agreed to have their names mentioned (see below). I have no way of knowing who wrote what unless they included identifying information, which in any case I have removed from this article.

Originally, I had grandiose plans of distilling their thoughts, outlining the key themes that emerged, and using a couple of quotes here and there to illustrate those themes. However, my plans changed once I read the responses. These guys were so articulate; I decided the best approach was to let them tell their stories in their own words. So this article is almost entirely made up of quotes. As far as I’m concerned, it reads like a storybook read to me by 30 guys I love and admire very much. I hope you agree.

 

Here is what I asked, and how guys responded.

My question to HIV-positive guys: “If PrEP had been available when you were HIV-negative, do you think you would have taken it? Why? Why not?”

 

The guys who responded were evenly split—half said yes, half said no. A couple of guys didn’t know. In fact, a few guys said that thinking back, it was really hard to know whether or not they would have taken PrEP.

 

“Yes. It could have prevented me from becoming infected.”

 

“Probably yes, given some of the risky sex I was having at different periods in my life.” 

 

“Since this was [over 20] years ago, I'm not sure. I was very successful with condom use at the time so I think it was a very different environment. If you changed the situation to today, I think (to the extent any long term survivor can imagine being HIV-negative) that I would use Truvada for PrEP periodically.”

 

“It is hard to look back and think ‘Oh, I would have done X or Y.’ How does anyone REALLY know? I would LIKE to think I would have considered it, especially since the time I seroconverted was in the context of a relationship where/when we stopped using condoms. We never discussed the fact that the condoms ‘disappeared’, but having had PrEP available, AND on my radar, it may have appealed to me—or at least gotten me thinking more about the absence of condoms from my sexual behaviour.”

Read the rest.

 

New Page - "Truvada Track" monitors insurance and Medicaid coverage of Truvada for PrEP

My PrEP Experience is pleased to launch a new informational resource called "Truvada Track - monitoring insurance and Medicaid coverage of Truvada for PrEP."

 

This page - accessible via tab at the top of this blog -  monitors insurance and Medicaid coverage of Truvada as PrEP . It will be updated frequently. The most current update is always at the top. If you have information about insurance of Medicaid coverage of Truvada for PrEP - including pre-authorization requirements or denials - please share this information with us by sending an email to myprepexperience@gmail.com.

Here is our first update.

July 1, 2013 update

 

 

Letter from United Healthcare regarding pre-authorization requirements for Truvada as PrEP.

Pre-authorization requirements for Truvada as PrEP from United Healthcare.

 

• United Healthcare (commercial insurance): Prior authorization required, consistent with indication on label, triggered when Truvada is prescribed without a third agent or in the absence of code for HIV infection (see pictures above)

• Aetna (commercial insurance): Prior authorization required, consistent with indication on label, triggered when Truvada is prescribed without a third agent or in the absence of code for HIV infection

• Florida Medicaid: Prior authorization required, consistent with indication on label, triggered when Truvada is prescribed without a third agent or in the absence of code for HIV infection

• New York Medicaid: Prior authorization requires documented HIV- test result; triggered when Truvada is prescribed without a third agent or in the absence of code for HIV infection

• Catamaran (pharmacy benefit management – select clients only): As of 6/25/13 – reports from health care providers of prior authorization impacting new starts on Truvada to confirm diagnosis (treatment vs. PrEP). Appears to allow PrEP use when consistent with label.

Notes:

• Up to July 1, we have not heard of denials of coverage. But pre-authorization requirements, many of which are just starting on July 1, could potentially lead to denial of coverage for Truvada as PrEP. 
• "Without a third agent" - Truvada is a combination of  2 drugs, and appropriate treatment for people living with HIV consists of 3 or more drugs. So, when Truvada is prescribed and a third "agent" is not, this signals that Truvada is being prescribed as PrEP.
• United Healthcare is the largest insurer in the U.S., and we understand that approximately 300 of their members (out of a total in the millions) are currently taking Truvada without a third agent. A very, very small percentage of HIV-negative people for whom they provide insurance.

Questions, concerns, or clarifications - send email to myprepexperience@gmail.com
 

CDC Updates Interim PrEP Guidance to Include Injecting Drug Users

via CDC's Morbidity and Mortality Weekly Report

On June 12, 2013, the Thailand Ministry of Health and CDC published results from a randomized controlled trial of a daily oral dose of 300 mg of tenofovir disoproxil fumarate (TDF) that showed efficacy in reducing the acquisition of human immunodeficiency virus (HIV) infection among injecting drug users (IDUs) (1). Based on these findings, CDC recommends that preexposure prophylaxis (PrEP) be considered as one of several prevention options for persons at very high risk for HIV acquisition through the injection of illicit drugs.

Read the rest.



 

Project Ready, Set, PrEP!'s Training Slides on PrEP for HIV Prevention

Chicago's Project Ready, Set, PrEP! (Project RSP!) has uploaded a fresh training on pre-exposure prophylaxis (PrEP) for HIV prevention. The training is designed for prevention workers, case managers, and others working in the HIV field and includes the key things you need to know about PrEP.

Check out the PowerPoint slides below, and feel free to download a copy. And please connect with us on Facebook. There are also a lot of helpful informational resources on the right-hand side of this blog just waiting to be clicked.

Project RSP! Training on PrEP for HIV Prevention 

 

PICS from the Community Talk Show "Can a Pill Revolutionize Sex for Gay and SGL Men of Color?"

On Wednesday, May 22, more than 60 folks joined Project RSP! (Ready, Set, PrEP!), My PrEP Experience, hosts David Dodd and Ken Like Barbie, entertainer ButtaFlySouL, Gustavo Varela and Sybil Hosek at Center on Halsted to discuss a revolutionary new way to protect ourselves from HIV called PrEP. Some pics from this community talk show below - more on the Project RSP! page on FB.

The Chicago Black Gay Men's Caucus, and others, Tweeted about the event.

Check out the right hand side of this blog for info and links to learn more about PrEP. Another community talk show on PrEP will be held later this year on the south side of Chicago. Watch this space!

The event was made possible through the collective efforts of the following organizations: Blackstone Avenue Marketing, Clubhouse Productions, Gilead Sciences, High Society Entertainment Group, John Stroger Hospital, K Dock Media, My PrEP Experience, National Youth Pride Services, PrideIndex.com, Rails Marketing Group, United Black Pride, and AIDS Foundation of Chicago.

 

Let's Talk About PrEP People! Join Us Tonight at Chicago's Center on Halsted

Can A Pill Revolutionize Sex for Gay and SGL Men of Color?

Join us to discuss/debate.

All the info you need is below and at this FB link. Doors open 6p for appetizers and socialzing, show starts at 7p with ButtaFlySouL. Free, fun, food, FABULOUS. Watch the promo video.

click 2 enlarge

[VIDEO] Damon Does PrEP

Damon L. Jacobs shared his PrEP experience with us in March.

Below is the intro to an interview he just did (May 13, 2013) on PrEP with TheBody.com.

As a licensed therapist working with people living with HIV, Damon Jacobs heard about pre-exposure prophylaxis (PrEP) as an HIV prevention strategy. When he found himself newly single after being out of the dating game for almost a decade, he re-entered a dating pool that was not at all condom-friendly. To deal with this, and to finally come to terms with his distaste for condoms, Damon began taking PrEP in July 2011 to stay HIV negative.

Now, almost two years later, he's never missed a single dose -- and he's become an advocate for education around PrEP, though he acknowledges that it may not be the right strategy for everyone. From dispelling myths around anti-condom attitudes to advocating that people be able to talk to their doctors about all aspects of their sex life, Damon reminds us that sex isn't dirty, and we can have sexual pleasure, but we have to be smart and know our own bodies.

Read the rest of the interview on TheBody.com. Watch Damon below :)

I wake up; I have my breakfast; I have my vitamins; I have my coffee. That was already an established routine in my adult life. Those are important things I do to take care of myself and start the day right. PrEP was just one thing to add into that. It wasn't anything that was inconvenient. It hasn't been something I've forgotten. It's just with the vitamins now. It's on the same little thing that the vitamins sit on, so I don't forget.

"Sex is not the enemy, ignorance is" - ButtaFlySouL

Can a Pill Revolutionize Sex for Gay and SGL Men of Color?

ButtaFlySouL will be performing at a community talk show on sex, love, and PrEP at Chicago's Center on Halsted - Wednesday, May 22 - reception 6p, show starts 7p.

Popular vlogger Ken Like Barbie  and social guru David Dodd host. Free food. Special guests. Great conversation.

PLEASE JOIN US! All welcome - gay men of color and allies.

Learn more about the event.

Learn more about PrEP.

"The ‘use a condom every time’ message just doesn’t work for everyone..."

Center on Halsted - May 22

“The ‘use a condom every time’ message just doesn’t work for everyone. The goal is to increase protection from HIV – and having more strategies like PrEP in our prevention toolbox can help us achieve that.” - Ken Like Barbie

Popular vlogger Ken Like Barbie (pictured left) and social guru David Dodd are hosting a FREE community talk show - "Can a Pill Revolutionize Sex for Gay and SGL Men of Color" - at Center on Halsted in Chicago May 22, from 6p to 9p.

The amazing ButtaFlySouL is performing. Twice.

There will be good food, good conversation - lotsa fun. Will you join us?

Learn more about the event. Learn more about PrEP.