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Friday, March 21, 2014

Buckle Up - Getting PrEP A Very Bumpy Ride

I got the impression that they thought I was just some gay pig bottom whore that wanted to party on the weekends.

Getting PrEP has not been easy for S. Among other challenges, he has faced grossly misinformed providers.

[Editor's note: S's experience illustrates, among other things,  the lack of knowledge about PrEP amongst a number of healthcare providers. He was told inaccurate information in a number of cases. We have highlighted in red the instances where providers gave incorrect or inaccurate information and provide a few editorial comments. After you read his story, check out this video that busts three common PrEP myths. And prepare yourself if you are interested in getting PrEP for yourself. Your doctor may need some education. Here is a handy brochure from CDC that can help you get ready for a PrEP visit to your doctor. Download and print or have it ready on your phone when you go. Do not assume your providers will know about PrEP. It is better to actually assume they know nothing. We are happy to help troubleshoot with you. Just email us.]

My journey to get PrEP started in June of 2013. Before that time, I had not even heard of PrEP.

 by S.

I was at a conference, and one of the speakers was giving a presentation on PrEP and TasP (treatment as prevention). Both of these were unknown to me, although I was aware of PEP (post-exposure prophylaxis).

At that time, I did not think Truvada was a viable option for me due to cost. But the seed had been planted.

In January of 2014, I read several articles praising PrEP from sources like Slate and Huffington Post. I started to do some research on my own, and decided to investigate this option further. I took two initial steps.

First, I contacted my insurance company to find out if my student health insurance would cover Truvada. It took several weeks, but they finally said it would be covered, but that I might need an authorization.

Second, I scheduled an appointment with my doctor on campus. Due to my student health insurance,
I need to visit the campus health center to be covered. My doctor was very friendly, and open to the idea, but was not familiar with PrEP. She agreed to allow me to get the kidney, liver, and HIV test I would need before starting Truvada, and said she would research PrEP and talk with the other doctors at the health center.

My test results came back, and I was HIV- and had healthy kidney and liver functions. Meeting with the doctor, however, did not go so well. She informed me that neither she, nor any of the other doctors on campus, felt comfortable prescribing this medication for the purpose I intended. She did refer me to an infectious disease specialist though.

It took a week to get the appointment, and the appointment was for six weeks later. So I was back to waiting.

Finally, the day of the appointment arrived. I was meeting with the Director of the Division of Infectious Disease for the state I live in. I waited 45 minutes to go back, and then, after meeting with the nurse, a resident came in. She verified that I wanted PrEP, and then started asking me questions.

"Do you have sex with men, women, or both?" she asked in a staccato manner. "Men" I replied.


"Do you have anal or oral sex, or both?" "Both" I replied.


"Umm .. do ... " "I'm the receptive partner" I answered for her.


"So your partner is HIV+?" "No" I replied. "I don't have a steady partner."


At this point, she put her pen down and stated "We don't prescribe this to people like you." [Ed: She is totally wrong. You do not need to have a steady partner, HIV+ or otherwise, to be prescribed PrEP.] 


Huh. Two months of waiting, and a flat-out no. I asked her "Just like that? No?"


 She said that her boss would come in and I could talk to him, but that they don't prescribe PrEP for people like me. And she left to get her boss, who is the Director of Infectious Diseases.

I was blown away. First, someone who I can only imagine deals with gay men on a routine basis, and she can't even get the words out to ask the questions she needs to know. Second, what the fuck did she mean by people like me? Men who have sex with men? Someone who is not fortunate enough to have found a partner to share their life with? Someone who wants to protect them self? I felt like she had already labeled me as "whore" and as far a she was concerned, the appointment was over.

Well, the head doctor came in. He went through a lengthy spiel that PrEP is not a solution, only condom use 100% of the time is effective, there are side effects, and that the studies were not done with people in my situation, but rather with monogamous couples where one partner was positive, the other negative, and the HIV+ partner did not have a drug-resistant strain of HIV. [Ed: The doctor seems to be confused with studies regarding the use of treatment as prevention which showed that HIV-positive people on treatment  with undetectable viral loads, and HIV-negative partners, were very unlikely to pass on HIV. PrEP studies have been completed with thousands of HIV-negative gay men, heterosexuals, and injection drug users. Some of these people in the studies had partners, some had POZ partners, but plenty were single.]

 He said that they tried some trials with male and female prostitutes [Ed: This is misleading. The trials certainly included men and women who were sex workers, but there was no trial that only recruited sex workers], but then literally shrugged that off. I don't know if he was referring to me as a prostitute or not. He said that taking Truvada as PrEP would actually put me at a higher risk of getting infected with a drug-resistant strain of HIV and that I would be screwed then. [Ed: The data does not back up this assertion.]

Also, this was a daily medication, not something I could take on the weekend and go out partying. That I wouldn't be protected from other STD's, that there were terrible side effects [Ed: In fact, most people taking Truvada as PrEP have no side effects, and a small percentage have minimal], that they don't know the long-term results [Ed. It is true we don't have long term data on Truvada use among HIV-negative people, but we have more than a decade of data with HIV-positive people using this drug for treatment, and it is considered quite safe], and so on. Everything except being at a higher risk for contracting a drug-resistant strain of HIV was already known to me. I had been researching PrEP quite extensively.

Later that day, I got very angry when I considered my appointment. Never once did either doctor ask WHY I don't use condoms 100% of the time.  Perhaps if they understood me or my situation, they might have been more caring.

My experience has been this:

- I've had two boyfriends in monogamous relationships where we had both been tested and decided not to use condoms. Both of them cheated on me.

- I've had condoms break during sex.

- I've had tops sneak the condoms off during sex. (Sorry, but when your'e ass-up, face-down on a bed enjoying the sex, you can't see when they slip the condom off.)

- Condoms typically irritate my skin.

- I've been the victim of an act of sexual violence, and the perpetrator did not use a condom.


Taking all of these together, I need to do something to protect myself and not have to rely on the top to do what he says to protect me.

But the doctors didn't care about that. I got the impression that they thought I was just some gay pig bottom whore that wanted to party on the weekends.

But, after all of this, the doctor did consent to writing me a prescription for Truvada. As he left, he said that this particular medication was usually tolerated very well. (So much for the part of his spiel going on about the terrible side effects.) Curiously enough, they didn't require an HIV test since I had just had one - two months ago. [Ed: This is problematic. The doctor prescribing PrEP should have done an HIV test. A confirmed HIV-negative test is absolutely necessary to start on PrEP. And people on PrEP need to get re-tested for HIV four times a year.]  (I did get one done by my regular doctor though, for my own peace of mind. It came back negative.)

The adherence nurse came in, and this is when I found out that I was the first person that has been prescribed Truvada as PrEP there. I live in a large town of 130,000 in the south. This just astounded me. I never thought I would be the only one or the first one.

But I had my prescription and I went to the pharmacy that the adherence nurse recommended. Then came the biggest surprise. My insurance did indeed cover Truvada, but the co-pay was $371. That is more than I pay for rent. That is more than a car payment. That was more money than I had. And I was devastated.

I called the adherence nurse, and I found out the second problem. Their office had lots of programs to help cover the costs of medications, but they were all for people who are HIV+, and I am not. She would look into it for me, she said. I told her that I would contact my insurance company and look at things on my end. But I really expected that PrEP was no longer a viable option for me.

I found some interesting things out, though. If I filled my prescription on campus, it would be at least $130 cheaper. When I went to retrieve the prescription from the first pharmacy, the pharmacist there gave me the number for a program that would cover $200 a month of my copay. I called, and was immediately enrolled.

PrEP was starting to look feasible again.

Then another hiccup. The campus pharmacy didn't carry Truvada. They would have to order it. And until they ordered it, they couldn't tell me what the cost would be. So I had to wait at least another day. Of course, after two months, what is another day or two.

After even more waiting, the campus pharmacy (which was suppose to save me money) was more expensive than the first pharmacy. I had decided that the $71 a month was a cost I could live with. I called the adherence nurse back to see if there were other options, but she was out for a four day weekend. I decided to just pay for it, and I started taking the pill today.

We will see what the next few days, weeks, and months hold for me.


  1. Thank you for sharing your experiences in the process of accessing PrEP.

  2. Wow, this really made my blood boil. It's horrible that you had to go through all that, and we can only imagine how many others have a similar experience. Good for you for having the strength of character to keep pushing for what you need to reduce your risk. Hopefully it'll make it easier for the next person.

  3. Come to San Francisco! It's so easy to get Truvada PrEP here. And it can be free! We want you here! :)

  4. Too bad San Francisco is so insanely expensive in terms of living expenses, most particularly housing. Seems like you need to be pulling down some serious coins to relocate to SF.

  5. It can be done! The media's portrayal of housing costs here is very exaggerated. There are still some pretty affordable areas left here. They aren't Castro or SOMA, but you're close enough. Also the East Bay is pretty close and much more affordable. East Bay residents can access nearly all the same resources as SF residents.

  6. Good to hear your perspective, Unknown. We are getting our info on housing mostly from long-time residents of SF who are not quite as optimistic in their outlook as you. Where there is a will, there is a way. Of course, people should be able to access the healthcare they need wherever they live. Most ppl can't just pick up and go. Just like we need equal rights for everyone, regardless of where they live, we need equal access to competent, quality healthcare.

  7. I have lived in SF for 8 years. I moved right after graduating from high school. I'm happy to speak on behalf of my generation. We have a voice too. Ask away!
    Follow me on Twitter: @pupbones (a 26 year old PrEPster)

  8. Sure and thanks. But our overall point remains - we have to work to ensure people can access PrEP, and the healthcare they need, wherever they are. Picking up and moving is not an option for most people - nor should it ever be necessary to have healthcare! Onward :)

    1. Like NYC, the San Francisco Bay Area has a long tradition of being an incubator for Social/Political/Cultural change (AKA, a trend-setter). Once things are figured out here, they are absorbed by the rest of the country. If you want to really make a difference, I think it makes sense to come here to make it work. It's almost impossible to do something like this in Kansas (for example).

    2. Two things. This blog is based in Chicago, where lots of work on PrEP is ongoing. We have research here (one of the only places in the country doing PrEP with 15 to 17 year olds, for one example), we have implementation studies, we have PrEP programs, and PrEP education. So, don't be under the illusion that the only things that are happening are on the coasts. We are right in the middle - and have lots going on. And two - the person who wrote this piece just wants to get PrEP for himself - as most people who want to get PrEP, it is not about "making a difference" or changing the world, it is about getting the healthcare they want. Which is totally fine and valid. We have been fortunate to be able to highlight some stories where there has been a struggle, to draw attention to the issues, but most of these folks aren't thinking about doing advocacy beyond their own personal healthcare.... Outside of sharing their stories - which is major.

    3. I'm just showing empathy for this person. It is really unfortunate people have to suffer this way, I certainly know. But it doesn't have to be that way. Sometimes we just need to take a leap of faith and go somewhere where we know people will love and care for us, for being ourselves.

  9. Thank you for participating in this conversation. I think we all learned a lot from this. I look forward to the ongoing #PrEP dialogue.

    P.S. I am "Unknown"


  10. Thanks for taking the time to write this article. It was very helpful and informative.



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