Bill's "Pretty Epic" PrEP Experience

So, I heard about this PrEP thing on a few websites, did some research, and thought 'Damn, gurl, this is right for me.'

All kidding aside, I am very troubled by this long and cumbersome multi-step process. It should not be this hard to get PrEP. I am a 43 year-old professional and have the fortitude to push through the red tape.But I can assure you I would not done all of this when I was in my late teens or early twenties.

by Bill
Portland, Oregon

Hello. I've been on PrEP now for 2 months and thought I would share with folks what I had to go through to get my prescription from Kaiser here in Portlandia (Oregon). It was pretty epic.

So, I heard about this PrEP thing on a few websites, did some research, and thought “Damn, gurl, this is right for me.” I went to my primary care doctor which, as fellow Kaiser members know, is S.O.P. for getting anything at Kaiser including a band aid. I don’t know my primary care doc too well (because I am generally healthy and don’t go to the doctor very often), but he seems like a pretty cool guy.

He listened and basically agreed that the medicine was right for me. But when he went to the Kaiser Computer System (aka “Hal”), he was not allowed to prescribe it to me, despite his best efforts. He said Kaiser protocols required that he refer me to an Infectious Disease doctor even though I had no infectious disease. (As an aside, I am somewhat baffled that my primary doc cannot prescribe Truvada, but he is allowed to prescribe powerful opiates and other really fun controlled substances).

Anyway, my primary doc referred me to the Kaiser IDI clinic and that’s when the real fun began. After setting my appointment with an IDI doc (which was 2 weeks out), I received a call from the IDI doc’s assistant telling me I needed to fill out a questionnaire before meeting with the IDI doc. Fine, I said, e-mail it to me.

The questionnaire required me to reveal lots of details about my fairly active sex life. How many times have I had sex in the last year? In the last 2 months? Do I sleep with dudes, ladies, or both? How often do I use condoms when I have sex? Do I do drugs? What do I think of the crisis in the Ukraine? I dutifully completed the questionnaire and sent it off to the IDI people for their consideration and entertainment.

Having jumped through the questionnaire hoop, the next step in My PrEP saga was to meet with the IDI doc. I guess the questionnaire wasn’t enough, so she asked me some more questions. Am I in a relationship? Do I want to be? Do I just meet guys for sex? Where do I meet guys (online, bars, etc.)? Have I ever had any STD? If so, what was it? When was I last tested for HIV? Am I a top or bottom?

If you want to know the answer to the last question send me a private message or find me on Scruff.

The IDI doc told me that I would have to be tested for HIV, gonorrhea, syphilis, hepatitis, and boy cooties. That all made sense. She also said they would test me for something called the CCR5 deletion gene which is that gene mutation that a small percentage of people have that makes them essentially immune from HIV, even if they are really, really, really slutty. I suspect their reasoning is that there would be no reason for me to be on Truvada (which, as the IDI doc pointed out to me several times, is very expensive) if I have some sort of natural HIV immunity. (Turns out I have one copy of the CCR5 gene which means I have “heightened protection against HIV,” but not immunity. That requires two copies of the gene).

Now, after all this, I honestly thought I was going to leave my appointment with the IDI doc with a prescription for PrEP (pending the results of my blood work). Boy, was I wrong.

IDI doc told me that Kaiser policy is to take requests for PrEP to a Committee of IDI docs for a vote. This Committee (which, I have confirmed, is not the same as the Obamacare Death Panels) meets once each month. Their next meeting was two weeks away. My IDI doc said she would advocate that I be on PrEP. I love her.

Interestingly, she also told me that I was only the third person in the entire Kaiser System in Oregon (which is actually pretty large) who had requested PrEP. She also said the other two had been turned down, including a fellow who was in a serodiscordant relationship with an HIV+ partner. After I looked up “serodiscordant” on my iPhone dictionary, I was quite shocked at this. I mean, of all the people who want PrEP, shouldn’t the HIV neg guy who is regularly having sex with a POZ guy be close to the top of the list? But I guess it’s none of my business.

My blood test results came back. HIV neg and no STDs. Yippee! Also, I was informed that the Committee approved my request for PrEP. So the stage was set and I picked up my one-month supply at the Kaiser IDI pharmacy, not that regular Kaiser pharmacy (that would be too easy). When it came time to refill my prescription, I had to have a another appointment with the IDI doc (by phone). Among other things, she asked if I had had any “risky” encounters which I understood to mean condom-less sex. Part of me wanted to say no, because I am on PrEP which makes them not “risky.” But I refrained and gave her the lascivious details she wanted. I then went through another round of blood tests and was approved for a three-month supply.

All kidding aside, I am very troubled by this long and cumbersome multi-step process. It should not be this hard to get PrEP. I am a 43 year-old professional and have the fortitude to push through the red tape. But I can assure you I would not done all of this when I was in my late teens or early twenties. I suspect that is still true of many young men and women today. That is unfortunate because these are the people who need access to this drug the most. As we all have heard, HIV infection rates are increasing among gay men who are 16-25 years-old.

I hope Kaiser changes its process for prescribing PrEP. I understand the need for the preliminary and routine blood work and on-going counseling about the extreme importance of taking it daily. But there is no reason that can’t be done by primary care physicians who often are the ones that know a patient best.