Episcopal Priest and CEO of Chicago House Shares His PrEP Experience

I’m not hip enough to tweet, and this is my first experience blogging, but I’m Stan J Sloan, an Episcopal Priest and the CEO of Chicago House, and this is my PrEP experience.

Chicago House was the first provider of AIDS Housing in the Midwest, and I am in my 14th year as CEO. I have heard about PrEP and PEP since they first surfaced, but somehow I didn’t begin my PrEP regimen until about nine months ago.

After the breakup of a five year relationship about two years ago, I have been single and dating. A process that is as charming as you can imagine it being for a 51 year old gay man.

Dating in 2014 is certainly different than it was when I came out as a 21 year old, and so I’m probably pretty normal in being as likely to meet someone decent at a coffee shop (although I don’t drink coffee) or at a black tie…as on an online site.

I figure that finding the right guy is a numbers game, and so I play the numbers until I find him.

I am a gay man who loves monogamy and wants that again in my life, but until then I date with all of the implications of dating. And so in that process it took me over a year post “FDA Approval” of PrEP to think through that, “condoms are great and always work…until that experience where they don’t.”

And when that occurred to me…and when I stopped to think of how lucky I was that I was still negative…and when I stopped to think how I wanted to move that “luck” to “certainty”…I called my doctor and asked about PrEP. And a week later I was on it, fully covered by my insurance.

I have had no side effects at all. And I am more relaxed about sex. And I no longer white knuckle getting my regular HIV tests done.

And I am helping my friends learn about PrEP, and I am working with the staff at Chicago House to see how we can help others learn about PrEP to keep them healthy.

So that is my PrEP experience at a personal level. HOWEVER, at a professional level I would add that the same judgments we received from the Religious Right when we started doing condom campaigns in the 80’s (“you can’t push condoms because you are condoning casual sex, and we should strive for monogamy”) has now resurfaced from WITHIN our community about PrEP (“you can’t encourage PrEP because you will be encouraging barebacking!”). It is maddening. It isn’t our job to dictate what other’s do in their bedrooms.

It is our job to keep people safe and healthy, and PrEP does just that. So what is the problem here?

In the 1980’s Larry Kramer and ACTUP armed us with, “Where’s Your Rage?” to get government, and pharmaceutical companies, and the general public to pay attention to AIDS. It is now 2014, and I would propose that arming ourselves with “When Is It Labeled A Scandal?” that gay men and Trans women have never heard of PrEP and are still seroconverting, and that it is still unaffordable to too many, and there is still only one option available from a pharmaceutical company?

When is it a scandal? I would say that now. It is a scandal now.

And that is the full sum of my first blog, and of My PrEP Experience :)

Now you have a good day!

Anon in Tampa - "She was very impressed with the homework I had done, and saw no reason why I shouldn’t be on PrEP."

I honestly thought that the hardest part would be convincing my doctor to consider putting me on Truvada, but I’m happy to say that it wasn’t.

by Anon in Tampa, Florida

I am new to taking Truvada as PrEP, but it’s definitely been on my radar for awhile - it just so happened that a few life changes prompted me to explore PrEP and have a chat with my doctor.

I recently came out of a breakup of an 8 year relationship - we were non-monogamous and fluid-bonded with each other, but used condoms for any other sexual encounter outside the relationship. We were both HIV- and I will admit that we played the game of serosorting (and in my case, being a top, de facto “seropositioning”) when we chose sexual partners to be with.

Flash forward a few months. I was moving forward, but not exactly playing the field sexually, as the breakup had me down in the dumps for quite awhile. However, I did have one close friend who I started to become physically intimate with, and while we didn’t put a label to the relationship, sex with each other was more frequent than a “fling”.

A few weeks ago, he came out to me that he had an HIV test come back positive and that he was worried that he inadvertently put me at risk. I reminded him that we had been using condoms and that I wasn’t aware of any other health factors between the two of us that would put us at higher risk than having sex with someone of unknown HIV status.

I was surprised that my feelings on the matter weren’t as tainted by the “HIV panic” that informed so much of my relationship decision making in the past - but this was a real, live person in front of me who I cared about. It made my previous thinking on the matter seem pretty trivial and backwards.

I started asking myself some hard questions and looking at my sex life in a more pragmatic way:

I am a gay man, with HIV+ partners or partners of unknown status, who will most likely be non-monogamous for the entirety of his sex life.

So why wasn’t I using PrEP?

I honestly thought that the hardest part would be convincing my doctor to consider putting me on Truvada, but I’m happy to say that it wasn’t. I know that the practice I go to treats quite a few of my LGBT friends, but it isn’t the kind of office that advertises in the local gay monthly, and, to be frank, they’ve always seemed a little haphazard in their approach to HIV testing (always at the patient’s request only, and with a double-paged consent form full of arcane legal wording that says that the test is not confidential), so I wasn’t expecting much.

However, my doctor informed me that she and another physician at the same practice had just been discussing PrEP the day before and were committing to get educated so that they could be ready for the first person to request consideration of a prescription. It just so happened that I brought it up the very next day.

I used the factsheets from the My PrEP Experience site and Gilead (check out links to the right for these and more) to better inform my doctor of why I was bringing it up and what my lifestyle factors were. She was very impressed with the homework I had done, and saw no reason why I shouldn’t be on PrEP from a general point of view.

With my recent HIV test and blood work, my doctor was able to write my prescription immediately and also ordered a more full STI picture as a baseline (to rule out any chance that I had Hepatitis B). My insurance covered all but a reasonable co-pay, and I was able to start taking it pretty much immediately.

I wanted to tell this story because this happened in Tampa, FL, at a practice that is not specifically focused on LGBT concerns. Sure, Tampa may be one of the larger Florida cities, but it’s not specifically known for having a liberal take on social issues, so I was a little worried that the doctors may be closed-minded when it comes to PrEP.

I was very happy that this was not the case.

NEW BOOK: Positively Negative: Love, Pregnancy and Science's Surprising Victory Over HIV

"How could someone have sex without a condom, not pass on the virus and have a healthy baby? It went against everything we’ve heard about unprotected sex for decades." - Heather Boerner, author

My PrEP Experience is very excited about this book. We featured one of the remarkable individuals whose story is told in this book on our blog. Our first post about "Poppy" was published in June 2012 - Trying to Get Pregnant and Thankful for PrEP and then, we were delighted to post a very very happy follow-up in November 2013 - Poppy's Story - How A Magnetic Straight Couple Utilized PrEP for Conception.

From a press release:

Positively Negative: Love, Pregnancy, and Science’s Surprising Victory Over HIV
($2.99, Amazon, July 2014) takes readers behind the scenes of the crucial last 15 years of the crisis, when scientific detectives forged a new understanding of the virus and the potent antiretroviral medications that would tame it.

Then, it follows two HIV-affected couples (in which one person has HIV and the other does not) as they pioneer a path to parenthood, harnessing the power of the new science in the service of the most natural of all drives—the formation of a family (including Poppy!)

In 65 brief pages, veteran journalist Heather Boerner weaves a narrative that’s part love story and part medical mystery, all in language that it’s easy for readers to understand.

In it, readers will learn:

• How HIV can affect heterosexual couples and their desire for parenthood;

• How HIV medicines have changed the futures of HIV-positive people and those they love;

• How babies can be born without HIV even though a parent has the virus;

• What it means when the news talks about pre-exposure prophylaxis (PrEP), Truvada, and treatment as prevention;

• How condoms went from the de facto safe-sex method to one of several options;

• How to safely conceive a baby with one’s HIV-positive partner;

• How far we have to go to implement the science and get to zero new HIV cases.

Order the book here.

 

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.