Previous My PrEP Experience Posts

Monday, May 19, 2014

That's What He Said - Part 1

What had begun as a promising visit to the doctor to begin PrEP, the most revolutionary advance in HIV prevention in decades, had instead become a misadventure into ignorance, idiocy, and irritation.


by Jody Wheeler*
Los Angeles, CA

As the elevator dinged downward, my headache ripped free the sides of my skull, pounded the torn pieces into a fine mist, and set to work violently assaulting the naked nerves.

Things hadn’t gone well.

Not at all.

What had begun as a promising visit to the doctor to begin PrEP, the most revolutionary advance in HIV prevention in decades, had instead become a misadventure into ignorance, idiocy, and irritation. The first two of those belonged to my doctor. The last, as my pounding head attested, me.

Picture for a moment a 40-something white guy, a poster-child for education, a beneficiary of cultural privilege, a fortunate freelancer taking advantage of newly affordable health care (Thanks, Obama!), visiting a doctor for, among other things, PrEP. Picture me. Picture me dashing. I like dashing. Dashing is a good, charismatic word. Picture me stunning if you like. That works to. No complaints.

Anyway. I sat in a brightly lit medical exam room, paper-wrapped table in front of me, ample selection of children’s toys near me (the office had a thriving pediatrics practice) an uncomfortable wire backed chair under me, and a friendly-faced doctor beside me. “Doctor Nameless,” as I shall refer to him, as “Anger Inducing Ignoramus” is too long to repeatedly write of this essay. He’d been typing notes of my visit into his handy medical records terminal.

“Anything else for this visit?” he asked with a smile.

“I’d like to go on PrEP,” I said.

His friendly countenance faded, as dark clouds of concern descended across his brow. “What do you know about PrEP?” he said, the storm building with each word.

I rattled off six months of constant reading: PrEP stood for “Pre Exposure Prophylaxis”, where the drug Truvada is taken daily as a preventative against HIV infection; multiple studies have shown consistent and correct use provides a level of protection against HIV equal to or better than condoms; the side effects of Truvada were generally mild to non-existent in healthy individuals, but still needed to be monitored for safety; that most major insurance carriers now covered the drug; and best of all, from an epidemiological standpoint, Truvada protects against HIV even when people miss a dose.

Hoping for a cookie, Doctor Nameless instead gave me an unexpected response: he said neither he nor any other doctor in his practice would prescribe Truvada for PrEP. He stated Truvada’s protection is uncertain and unproven, it destroys the body, and leads to long term and dangerous health consequences.

“In those studies, scientists don’t even know if it was the Truvada or the condoms that provided the protection people keep quoting,” he said with utter seriousness.

Dafuk? went the 12-year old smart-ass who lives in the back of my head. Did you check to see if he’s actually a doctor and didn’t just borrow a coat from someone golfing —

Yes. Shut up and let me talk, I told that 12-year old smart-ass who lives in the back of my head.

“That’s not what the research shows,” I began. I tried not to sound like a know-it-all. I failed. I always fail in these moment. I do try. Researchers had correlated blood serum levels of Truvada with the preventative effect achieved. It was all about the pills, not the condoms. While I wasn’t an expert on biology, the methodology provided in the journals was powerful stuff. “The research is quite robust,” I finished.

My pushback surprised him. I guess patients usually don’t respond with sentences containing “journal articles”, “blood serum levels”, and “methodology.”

He pivoted the conversation and said Truvada would destroy my kidneys. His words echoed as my mouth had fallen open from utter incredulity, thus providing the perfect acoustic shape between my tounge, throat and teeth for his silliness to bounce and fade, bounce and fade.

Get out. Get out now! Run, dude! Runaway! Again, the 12-year old smart ass who lives in the back of my head.

Know-it-all me engaged Doctor Nameless again. I told him there was little evidence of that in HIV negative people. Some research subjects did have their kidneys work harder, but for most of them, that passed. Very few people in the study had to stop treatment because of a risk of damage. In any event, medical guidelines still mandated monitoring for just that possibility.

Again, not what he was expecting, as our conversation veered into a new, oncoming traffic lane of screeching, beeping, destruction: Sexually Transmitted Infections (STIs). “Truvada doesn’t protect against STIs, so it isn’t safer sex,” he said rather definitively.

The headache I mentioned at the top of this essay? This is the exact moment when it started. I remember distinctly. It walked in, said Hey, I’m here. I’ll be your headache for the next few hours. I’m going to start banging around, driving you nuts. I brought friends. I think we’re ordering pizza, too, and got to work causing my head to hurt.



“The perfect can’t be the enemy of the good,” I said to Doctor Nameless, now visibly peeved.

“Condoms don’t protect against all STIs either. And who said anything about using Truvada to protect against other STI? This is about HIV.”

(On the ride home, I realized I should have added that a condom on your cock won’t protect you from an STI in your mouth. Vivid image, right? I blame the headache.)

You might think it ended there, with me peeved, him realizing I’d read some stuff, and the chorus of fictional characters from my over-active imagination having a pizza party while a head-ache throbbed away. Nope. I continued to spar with Doctor Nameless.

“The lab work is expensive!” (My insurance will cover it.)

“What we really need is a vaccine!” (Call me when we have one.)

“Truvada is only right for sex workers!” (I almost said that having sex with my last boyfriend was nothing but work, but I again managed to silence the 12-year old wise ass in me before he took the floor.)

I’d about reached my peak. But I was still hoping, still willing to play another few rounds of That-ain’t-true-about-Truvada ping-pong, in the hopes that maybe I could change his mind, correct his mistakes, or just get to a happy medium.

He served again:

“Truvada will destroy the bone-density of your hips over the next 20 years,” he said. Ping.

“Doc, in 20 years I’ll be 65. Lots of other things could destroy my hips by then.” Pong.

“You could have to get your hip replaced!” Ping.

“I don’t think there’s anything in the research that says that’s likely.” Pong. (I didn’t know a great deal about this one area. Later I’d come to find, surprise, he was wrong on this, too.)

“But you know people who break their hips go into the hospital …and then die!” And he spikes the ball!

I know. I shifted from ping-pong to volley-ball. It seemed apt. Besides, with that comment, he’d done it. He'd reached The Ridiculous Zone and I wasn't interested in boldly going onward, seeking out and exploring new worlds of stupidity, ignorance, and despair. I pulled back. I got quiet. I went to my happy place. Or tried to. The headache was in the way.

"I see I've offended you,” he all but deadpanned.

Ya' think? (That wasn’t the 12-year old wise ass. That was me.)

As if he was dealing with a petulant 12-year old, he shook his head and said that if, after everything he’d mentioned, I still wanted to go on Truvada, he'd run a full battery of tests and require quarterly visits in order to keep the prescription current — the standard treatment that every doctor who prescribes Truvada is supposed to do.

If he’d stopped there, I might have left with some semblance of respect for him. His on-line reviews said he was a good physician, his work history was impressive, and his schedule was always booked with patients. I could have gone off thinking he meant well but just wasn’t right for me.

Alas, he blew it by adding, “And as you destroy your health, I’ll be there for you. We’ll go through it together.”

We’ll be there too, said the throbbing headache (and his friends.)

You know I’m always here, added the wise-ass 12-year old from the back of my mind. He snacked on a slice of the headache’s pizza.

Wanting to salvage something from the visit, and worried that my insurance would force me to see this guy again — that doesn’t happen, but in the moment, that was a concern — I told Doctor Nameless to go ahead and run the tests. I’d deal with everything else later. So he cultured the back of my throat, passed me off to an incredibly nice nurse / vampire who pulled several vials of blood from me for testing. Then I pissed in a cup, stuck a swab up my ass, jammed it in a specimen tube, and left.

Oh, and his office didn’t validate.

In the car, on the way home, I was pissed and angry. That shouldn’t have happened at a top-tier medical group in a big city like Los Angeles. His ignorance and value judgement were being imposed over my own. It struck me also that if I was having these problems, what about people without my same advantages? How are they dealing with such impediments to prevention? I’d heard stories. Now they were real in a far different way.

There was only one thing to do next, one way to achieve clarity, find guidance, and strategize ways to turn this around in order to make things better.

I’d bitch about it on Facebook.

*A former therapist and social worker, Jody Wheeler, M.Ed., M.F.A., is a writer and director in Los Angeles California

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