Written by Rupa Patel, MD, assistant professor in the Department of Medicine at the School of Medicine
The number of new HIV infections per year in St. Louis and nationally have not declined over the past 10 years despite the enormous amounts of money and energy spent on this issue. The medication used for PrEP, Truvada, is more than 90% effective when taken as one pill once a day. While PrEP is effective on its own and has been approved by the FDA since 2012, it makes up only one component of HIV prevention which also includes condom use, routine STD testing and treatment, routine HIV testing, and risk reduction counseling.
Since its appearance on the scene, PrEP has been hailed as “game changer for HIV prevention” and the US Centers for Disease Control and Prevention has issued guidelines for the integration of PrEP into primary care. In addition, the CDC has set up a provider PrEP hotline and information on its website for potential PrEP users.
In response to PrEP demand in the St. Louis region, which was not being met by primary care clinics alone, Washington University in St. Louis’s Infectious Diseases Clinic began its PrEP program in June 2014. Since that time, we have provided more than 80 consultations for PrEP.
Among the most informative and, additionally, disheartening things I have seen while providing PrEP is that many patients, among the most motivated and connected to healthcare, have struggled to gain access to PrEP care. Some people who have gone through the journey of seeking PrEP have written their narratives, which I’ve shared below.
But what does this mean for the uninsured or the underinsured? Especially in a Medicaid non-expansion state.
PrEP has motivated people, who may otherwise have not gone to the doctor, to seek care. PrEP has been called “the gateway drug to primary care” for healthcare for some at-risk populations. It will be important for our community to seize this opportunity to connect these highly motivated individuals to other preventative services.
Until an HIV vaccine is available, PrEP will likely remain one our most valuable tools in the fight against HIV. But PrEP’s value hinges on the ability of our community members to get access to its benefits. However, despite the challenges, PrEP awareness and access is growing though collaborative community efforts. With these efforts over time, the region is well on its way towards decreasing the number of new HIV infections per year.
Person #1 PrEP narrative (24-year-old male)
For me, getting a prescription for PrEP was the next step in taking control of my narrative and sexual responsibility. Not only am I a racial minority but I’m a sexual minority as well. Being a Black bisexual male means I represent a unique demographic of queers who are adversely affected by the AIDS/HIV demographic.
There aren’t many stories of resilience and triumph for men like me. There aren’t many stories at all because men like me are still fighting for visibility, even within the queer community.
All of the men who told me about PrEP were white, middle class, and insured. I began to wonder about the accessibility of PrEP because many working class and poor queers of color, especially Black, had no clue about PrEP.
I found out about PrEP during a weekend vacation to Chicago. I downloaded my apps and began browsing. I noticed several men had a clever PrEP headline or a straightforward message, “Ask Me About PrEP.” To satisfy my curiosity I reached out to a gentleman who told me about the wonders of Truvada, a drug that could not only treat HIV but was recently approved by the FDA to be used as a method of HIV prevention. I could not believe it or trust his information so I asked another guy. He told me the same thing. As a matter of act, all the men I asked told me the same information as the last. My mind was blown.
I consider myself a guy who is well versed in information concerning AIDS/HIV & prevention. Why hadn’t I heard or at least read an article about this drug?
All of the men who told me about PrEP were white, middle class, and insured. I began to wonder about the accessibility of PrEP because many working class and poor queers of color, especially Black, had no clue about PrEP.
I started my research and began the process of getting a prescription for PrEP. For an uninsured person there seemed to be a lot of work for me to such as finding a health insurance provider, a physician that prescribes PrEP and a host of testing to follow.
The process of finding a doctor who prescribed PrEP was difficult. I got help from a Twitter follower who has a background in HIV prevention. I was lucky to have this interaction via Twitter but many people aren’t so lucky.
Although taking PrEP daily has been a fairly easy task, acquiring PrEP can be difficult. My hope for the future is finding a cure for HIV. Until then the Healthcare system and medical professionals alike should find a way to make PrEP accessible to marginalized people within the queer community.
Person #2 PrEP narrative (31-year-old male)
So the reason I decided to take PrEP was because I was dating an HIV positive person and things were going quick. I wanted to feel safe any way possible. I remember hearing about PrEP on Facebook so I read about it and was convinced this was a drug that could mark the start of something good against the battle of HIV with little if any side effect.
PrEP is definitely the one big step in the right direction when it comes to ways of preventing HIV.
Being on PrEP has made me feel so much safer than condoms. Not saying that condoms aren’t safe, but condoms protect you externally, with PrEP it can protect you internally so why not do both being a gay man. Thers always that what if feeling with having sex even when you are using protection. PrEP takes that away. I want PrEP to be accessible for everyone this is a big step in combating HIV infection a disease that wiped out a generation. I’m truly blessed to have been on PrEP since July 2014. The feeling of doing my part in the battle against HIV makes me feel good it’s not about me but me being protecting my generation and the future generation. PrEP is definitely the one big step in the right direction when it comes to ways of preventing HIV.
Person #3 PrEP narrative (22-year-old male)
Unfortunately, seeking a doctor that would prescribe PrEP has left me with quite a bit of disappointment and distrust of medical professionals in general. Initially, when I asked my primary care doctor about it, I wasn’t surprised that he had only heard of PEP, and not PrEP. However, after being referred to two separate infectious disease specialists, I was frankly disgusted. Even though both of them specialize in and actively treat people with active HIV infections, one of them was unwilling to see patients for PrEP, and the other flat out denied its existence.
The first, even though they acknowledged PrEP exists, reminded me to practice safer sex, and effectively implied, “just try not to get HIV.” Although safer sex methods outside of PrEP are definitely both effective and good practice, it’s missing the point: given the high incidence and prevalence of HIV among men who have sex with men, extra protection is both desired and greatly needed.
The phone call with the second contact was much worse. I remember explaining to the nurse that I read on the internet how the World Health Organization, the CDC, and other various organizations recommended Truvada as a daily regimen for PrEP. The nurse told me almost word for word, “Well, you can’t believe everything you see on the internet.” This was from the office of a specialist in HIV. The incompetence is truly mind-boggling.