I am currently a “patient” taking Truvada. I say “patient” because I am not the type of patient who has historically taken FTC/TDF to suppress an existing HIV infection, but, rather, a member of a growing population of people taking Truvada as PrEP to prevent HIV infection. In this blog post, I hope to share a little bit about my story, my experiences and thoughts on PrEP, and close with a challenge to those of you reading who are health-care providers.
Reasons for starting PrEP
At the time of writing this blog post, I have been taking PrEP for a little over 8 months. I had learned of PrEP as a new tool for HIV prevention during a conference session while attending the annual Creating Change Conference in January of 2013, shortly after Truvada was approved by the FDA for this purpose, but I was still not clear on the evidence for, or against, PrEP. Nonetheless, I knew PrEP was an option. Fast-forward one year, and quite a bit had changed. The literature on PrEP seemed to proliferate exponentially, and more information had reached mainstream news and media outlets. I had also recently entered into a relationship with my [current] boyfriend. We had decided to be sexually monogamous with each other. We did not, however, have the degree of communication that the relationship needed, especially around this commitment, and discussion of STIs (including HIV) was minimal, save for us initially agreeing to use condoms when having sex together until we both got tested to ensure that we did not have an STI at the time. Fast-forward another 6 months, and I discovered that my boyfriend had been having unprotected sex with multiple other sex partners without disclosing this information to me. This isn’t an uncommon story, and I, too, had had sex with another person, though risk was low (oral sex only), and I did disclose this information to my partner. However, after this sudden discovery I became greatly concerned, anxious, and even paranoid about the possibility of having an STI… with HIV being the elephant in the room. That same day, I went to my local drug store and purchased the OraQuick in-home HIV test to give me at least some peace of mind, though doing calculations in my head at the same time of when I could expect to have an accurate result. I also made a commitment that day to begin taking PrEP – if I was still HIV-negative.
This was not the only reason I decided to start PrEP though. I had also grown very tired of thinking about sex, even non-relational sex (“hook-ups”), as risk. I was tired of calculating my risk, thinking about the data on transmission odds for different acts; tired of HIV being the elephant in the room, and most of all tired of framing sex as something to be fearful of. Ever since the first reports of “gay cancer” and “GRID,” and the onset of the AIDS epidemic, gay, bisexual, and other men-who-have-sex-with-men have been fearful of sex. Some have not, true, and some feel resigned to a fate of becoming HIV-positive, but I am not one of those people. Though I did not live through the early days of the epidemic, I am all too aware of the toll HIV took on the gay/MSM community. I am aware of the toll HIV continues to take, with 50,000 new infections diagnosed each year in the US since 2004, and the incidence increasing among MSM. I am all too aware of the realities of living with HIV, with a friend recently passing away from AIDS-related complications. These are also the reasons I decided to start taking PrEP – not only as a commitment to my personal health, but also as a commitment to those who have suffered, who currently suffer, and who will suffer from HIV/AIDS, and as a commitment to all gay, bisexual, and other MSM to work to de-stigmatize what MSM sex has become. As someone who considers himself an HIV prevention advocate, if I am not going to do it, who will?
Now, you may just say “use a condom!” This message is remarkably out of touch though. With 50,000 new HIV infections each year since 2004 in the US alone, and with the percentage increasing among MSM, it is clear that having condoms as the only prevention method is not working. Until there is an effective vaccine, I firmly believe that we must research, advocate for, and fund additional biomedical prevention methods. Truvada as PrEP is one such prevention method, and, if adhered to, a very effective one at that. By holding the belief that every man-who-has-sex-with-another-man should be using condoms with each and every sexual act, and by attempting to change the behaviors of those who do not, you are stigmatizing and shaming those who desire connection, intimacy, and heightened physical pleasure, and those who do not want to use condoms when having sex – whether in a mutually monogamous relationship or not. It is a reality that many MSM do not want to use condoms, will not use condoms, or will inconsistently use condoms when having sex. This was the reality in 1992, over a decade into the AIDS epidemic when contracting HIV meant a sure death, and it is the reality today, so we must acknowledge and accept it. I want to make it clear: I am not advocating for no condom usage, but I am saying that forcing condom usage on everyone does not and will not work, and that there must be other options. Personally, I prefer not to use condoms with every sexual act (I am more inclined to use condoms with anal sex than with oral sex, for instance, just knowing the risk involved), and I do not want to use condoms when I have sex with someone that I am dating. Thus, PrEP became a very good option for me.
After following up with my medical provider, I tested HIV-negative (using a fourth-generation HIV test), and also negative for other STIs. However, one of my main concerns with starting PrEP, aside from potential negative side effects, was the possibility of developing viral drug resistance if I somehow acquired HIV. After looking into the literature from the iPrEx trial, though, I was reassured to learn that the only people who developed drug resistance were those who had an undetected acute infection when starting Truvada (resistance to FTC only; no TDF drug resistant mutations or reduced phenotypic susceptibility were observed), and that drug resistance (to FTC) waned rapidly after discontinuing Truvada. With that knowledge, I decided to wait to begin PrEP until I got repeat testing 1 month later to ensure that I did not have an acute undetected infection. During that month, my boyfriend and I spent a great deal of time working on building trust back into our relationship; working on our communication; even going to couples’ counseling together, and, ultimately, deciding to stay together, though in a sexually non-monogamous relationship going forward. I can write a whole other blog post on relationships, and what that has meant for us (hint: lots of communication, honesty, and disclosure is included… and also love), but it also meant that we agreed to both start PrEP – as a commitment to each other’s health. I did not have sex during that month, either. Following a repeat negative result 1 month later, and being cleared medically, I next sought to acquire PrEP.
Experiences with acquiring PrEP
For my medical provider, I was the first patient to request to be prescribed PrEP. My provider was knowledgeable on PrEP, and willing to prescribe it to me, especially considering that I met the “high risk” criteria in the CDC guidelines. This scenario is not the case for everyone though. Unfortunately, some patients must be their own advocate, even to their medical provider, who may not be willing to prescribe PrEP and may instead approach safer-sex from a condom-only perspective. Some providers are also not aware of PrEP, and may require education themselves. I am making the assumption that those of you reading are aware. However, I want to comment on the “high risk” criteria established by the CDC. I truly believe these criteria should be considered exactly as they are framed – as guidelines, not as hard and fast rules of who should be, and who should not be, eligible for PrEP. For example, if, when taking a sexual history, a patient discloses behavior that places them at substantial risk of HIV acquisition, it could be important to consider discussing the option of PrEP with the patient. I believe, though, that anyone seeking PrEP as an HIV risk-reduction tool should be prescribed it (given they are medically eligible). If the “patient” is seeking PrEP, they have very likely already thought about risk, and about other prevention options. PrEP cannot only provide a reduction in risk, but also peace of mind. The World Health Organization currently recommends in their guidelines on HIV Prevention, Diagnosis, Treatment, and Care for Key Populations that ALL [emphasis added] men-who-have-sex-with-men should have the opportunity to choose PrEP if they feel that it meets their HIV prevention needs.
After being prescribed PrEP, I then sought to get my prescription filled. Of course, my first question was “how much is this going to cost?” The cost of Truvada in the US is about $1400/month – no small amount, by anyone’s standards. I had looked up information on Truvada on my insurance company’s website – it was considered a Tier 2 drug ($50 copay), but also a Specialty Drug, which may have meant that I also had to pay a 25% coinsurance premium; this would have made the drug unaffordable to me, as a graduate student. I called my insurance company, but they were not able to provide information on the actual cost until I got the prescription filled at a participating pharmacy. Truvada was not available at the pharmacy of the health center I went to, so I sent the prescription to Walgreens Specialty Pharmacy. After “filling” the prescription, I found out that I only had to pay a $50 copay; a big relief. Later, I learned of Gilead’s Copay Assistance Program, which brought my out-of-pocket cost to $0. I have often thought about the cost of Truvada to my insurance company, versus the amount I pay for insurance (which is much less), but I will save the discussion on the economics and social justice of HIV prevention versus HIV treatment for another blog post. A 30-day supply of Truvada was then shipped directly to my apartment, so I began taking it.
Experiences on PrEP
While being on PrEP, I have had several side-effects – some “negative”, most “positive.” In terms of the “negative” side effects, for approximately the first month taking the drug I experienced a moderate amount of excess gas, which was humorous at times, but which also resolved quickly. I also experienced intermittent headaches, but these also resolved quickly, after the first two months. At follow-up evaluation with my medical provider, my renal function has remained good, so that is the extent of my “negative” side-effects on Truvada.
In terms of the “positive” side-effects, sex has become more of what I feel that it should be: healthy, enjoyable, and absent of fear. Not only have I remained HIV-negative, but I have also had immense positive mental health benefits. I feel that discussion of these “positive” side-effects is often absent in conversations on PrEP, as are conversations on the emotional aspect of sex in general. I have had peace of mind, and, although my risk behavior has been low since starting PrEP and has generally always been low, I have not sat anxious and consumed in fear while awaiting the results of an HIV test. I am also very open about being on PrEP, and have encouraged many friends to consider it as a prevention tool as well. This is another unmeasured benefit of PrEP: it has the potential to open up conversations on sex and on risk; conversations that many who are engaging in sex are not having. In fact, I believe that something you will find about those currently taking PrEP is that they are at least aware of risk, and want to reduce it. This may be one reason why most research studies have found that after starting PrEP, participants have not engaged in “riskier” behavior than they were already engaging in. My relationship with my boyfriend has also gotten healthier, and although that is not all attributable to PrEP, I do feel like the San Francisco AIDS Foundation message “love may have another protector” is applicable.
I intend to stay on Truvada as PrEP indefinitely, or until: 1) better or more convenient options become available, i.e. injectable forms of PrEP that require less frequent dosing, 2) an effective vaccine is developed, or 3) my insurance changes and cost becomes prohibitive. I really hope cost does not become the deciding issue.
Challenge to clinicians and health-care providers
My challenge to anyone reading this blog who provides health-care to someone who may be eligible for PrEP, is to meet your patient where they are. I recently had the privilege of sitting on a PrEP patient panel at the UNC’s Institute for Global Health & Infectious Diseases and the Greensboro Area Health Education Center’s Clinical Care in 2015: HIV, Hepatitis C, and Vulnerable Populations conference, also known as May Update, on May 4, 2015. During the panel discussion, a provider in the room stood up and commented that they could not believe we were “…saying it is okay to not use condoms.” If you read my blog post, you will see that is not exactly what I am saying; however, I am saying that some people do not or will not always use condoms (myself included), and for those people PrEP may be an important option. During that conference, the panel was also asked another question: “why are more MSM not seeking PrEP?” I have thought about this long and hard, and think it is for several reasons: 1) lack of awareness or knowledge about PrEP, 2) concern over cost, 3) fear of slut-shaming (i.e. being labeled a “Truvada Whore”), 4) lack of awareness of their actual risk for acquiring HIV, and 5) the fact that there is still a very public debate on PrEP, and that it is not even fully embraced by the medical community. That last reason is why I am writing this post – to plead with you to consider all aspects of the PrEP conversation, as well as current research, personal views aside. One last question that was asked to the panel: “do you think you are just looking for ‘the one’, one person to be intimate and loving with, and once you find them you will no longer need to be on PrEP?” While I appreciate the question, and am sure it is applicable to some people, if you don’t see the problem with that question I encourage you to look up heteronormativity, non-monogamy, and polyamory. My challenge to you is to try to understand your patient, and place yourself outside of your own lens and biases to meet them where they are.
If I can be of any help, as a current patient, please do not hesitate to reach out.
A few articles and sites I like:
- What About Condoms? - http://positivelyaware.com/articles/what-about-condoms
- Let’s Talk About Sex – http://www.huffingtonpost.com/harvey-makadon-md/lets-talk-about-sex_1_b_4788730.html
- PrEPWatch – http://www.prepwatch.org
A little bit about the author
Adam Ward is a 26-year-old gay, white, cisgender male. He currently holds a Master of Science in Comparative Biomedical Sciences, and a Graduate Certificate in LGBT Health Policy & Practice. He is passionate about working to eliminate health disparities impacting LGBT people, including HIV/AIDS, which he hopes to make a career of. He can be reached by e-mail at firstname.lastname@example.org.