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 

Richard - After Finally Getting PrEP Green Light, Still Disheartened

by Richard
Raleigh/Durham/Chapel Hill
North Carolina

Seven months later I finally achieved my goal, but the journey was anything but easy or fun... That first blue pill I took on June 2 was the result of tons of labor, perseverance, frustration and doubt... I'm doing my part, but the medicine on the ground isn't.

I had seen online profiles including mention of PrEP for about a year, but it was only a trip to San Francisco in December 2013 during which I was confronted by PrEP billboards on the streets and buses and subway cars when everything clicked for me.

I hooked up with buddies there and asked what's with all the PR and for that matter PrEP. They said, YOU need to be on it. I returned home to Raleigh-Durham with the resolve to get on PrEP as fast as possible.

Seven months later I finally achieved my goal, but the journey was anything but easy or fun. And after getting the green light, I'm still disheartened.

I first addressed PrEP with my family doctor at a Duke University general practice in early January 2014, immediately after my vacation in California. I was told that she would not discuss this with me due to lack of knowledge and experience. She said I had to go to an infectious diseases clinic.

Intimidated and scared, I nevertheless contacted the ID clinic at UNC Chapel Hill where PrEP clinical trials have been underway for a while. The staff there asked whether I had seen a social worker yet to discuss my seroconversion and to talk about my insurance options, and when I informed them I am neg and want to start PrEP they told me that the ID clinic couldn't help me.

I then called the trials unit at UNC and after weeks of emailing with a staff member close to the MD/PhDs there, he told me that no one could help me, especially as there was no open trial for me to join. "Unfortunately the doctors in the UNC Infectious Disease Clinic are currently unable to prescribe PrEP, but they are discussing things and trying to figure out a way to make it a possibility there." (Only men of color were currently being considered.)

Next IU called the LGBT center in Raleigh, NC, and asked whether they had any local info on health providers with PrEP experience. They didn't know what PrEP was. Neither did the NC AIDS Network. I then called a different Duke ID clinic based in Raleigh where a HIV neg buddy was able to get Truvada; the staff told me:

We don't do that here. I then went back to my primary care clinic again and confronted another doctor, who replied via email:

"I'm afraid I won't be much help as this topic is not within the scope of my practice."

He then called the doctors at Duke's main ID clinic and managed to get a response: 4 physicians could see me about this. A referal was ordered but only after I patiently waited 2.5 weeks did I call to see where I was in the pipeline.

Apparently, I was in a permanent holding partner. They didn't know what to do with me.

After additional prodding, I was asked when I received my HIV+ diagnosis. When I made clear I am (to my knowledge at that point) still neg and was referred to Dr. So-and-So was I transferred to a nurse who then put me on hold 3 times only to tell me that "Oh PrEP is so new that we don't have that much experience with it." She made an appointment for me 4 weeks out, the Dr. then canceled my appointment for whatever reason, requiring me to call back and request the next appointment with the next available ID specialist.

Three weeks and a bunch of vials of blood later I was told I was qualified to start Truvada. 15 minutes after the script was filed, Walgreens called to say my prescription was ready to be picked up. Whoa. The pharma industry was instantly ready to sell me Truvada but the health professionals took 7 months of prodding to give me the green light.

WTF.

That first blue pill I took on June 2 was the result of tons of labor, perseverance, frustration and doubt.

Guys in major gay cities may attribute my experience to living in North Carolina, but the truth of the matter is that my major health institutions are major players in medicine and science, but PrEP still remains largely a mystery to both health professionals here and their staff members.

When I returned to my GP for a sinus infection a few weeks later, he sat in silence, reading the ID clinic's accessible report regarding my path to PReP. I asked him, what's it gonna take for you to prescribe this to men like me who are trying like hell to stay negative, reduce transmission rates and protect gay men's health. He told me his sad story of watching a closeted married guy with a wife and 2 kids die a gruesome death in 1982 from HIV-related causes and then said: only when Gilead or someone from the CDC or other medical institution trains him on how to prescribe PReP will he be ready to do so. How depressing and contradictory.

The final kick in the pants was a bill from Duke University.

My office visit to the ID Clinic, which entailed a basic physical exam and drawing blood, would cost me $407. Had my primary care doctor seen me, it would have been $15. I'm contesting this for the simple reason that I'm being penalized for my doctor's unwillingness to familiarize himself with PrEP. I also wrote him, explaining the situation and asking politely that he reconsider his position on this issue and PrEP for future patients.

After what I've been through, I'm not holding my breath.

I've also made mention of PrEP in my online profiles and have already discussed it with men who practice unprotected sex and men who are in serodiscordant relationships who were unaware of the option.

I'm doing my part, but the medicine on the ground isn't.

There is a huge structural problem we're facing and it strikes me that in places like North Carolina's Triangle and every other point on the map that isn't über-gay, it's gay men like myself who are willing and ready to educate people and push doctors to help them who will help make PReP a tool of use to all of us at risk.

It's an advocacy front that maybe many don't want to joint for the simple reason that Truvada as PReP may feel just like a license to screw safely, but I personally think the gains are terribly important and could transform our sexual lives in radical ways.

Prepping for a difficult visit with the doctor?

NEW INFO RESOURCE

Click: PrEP and working through a difficult doctor visit

PrEP is a revolutionary medical advancement for preventing HIV infection. If you believe you’re a good candidate for PrEP, or at least want to discuss it, then you’re entitled to have an informed and respectful conversation with your medical provider.

Unfortunately some providers have been uniformed, ill-informed or even biased about this medical intervention. Because of the challenging stories we’ve heard from individuals, Project Inform wrote this pamphlet (with help from us at My PrEP Experience) to help you prepare for a visit to your medical provider to discuss PrEP, and to correct any false or misleading information you may hear in the process.

 This is a brief 'n easy-to-read brochure and friendly to your handheld device. 

Visit Project Inform for other great resources on PrEP.

(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