Your Experience is a Gift

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Tuesday, July 22, 2014

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.


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.

Sunday, July 13, 2014

Prepping for a difficult visit with the doctor?


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.


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