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Addressing Stigma and Barriers in PrEP
Why I Started, Why I Stayed: A Patient’s Perspective on PrEP

Released: December 20, 2023

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Key Takeaways
  • Healthcare professionals (HCPs) should possess a receptive attitude that motivates patients and actively supports/prioritizes their needs to individualize pre-exposure prophylaxis (PrEP) adherence strategies.
  • The eradication of stigma, discrimination, and judgement in medical practice is essential to foster an environment where patients feel comfortable engaging in open and honest discussions with their HCPs about PrEP and encourages PrEP persistence.

Prior to 2019, I was unaware that pre-exposure prophylaxis (PrEP) existed. In 2019, I got involved in PrEP advocacy through a close friend who was living with HIV. As a result, I started my own research on HIV prevention and found a wealth of material—particularly from the CDC—regarding PrEP and the specific populations who are considered at risk for HIV acquisition.

Even though I was astonished by my lack of knowledge about this prevention option, at the time I concluded that PrEP was not suitable for me because of my commitment to celibacy.

But after participating in more PrEP advocacy, I observed a severe lack of awareness about PrEP among an increasing number of people who were acquiring HIV. That’s when I realized that, despite my current celibacy status, I did anticipate engaging in sexual activity in the future. I decided to proactively start using PrEP to ensure my safety and preparedness for that moment.

Encouraging Accountability to Improve Adherence and Persistence
It was initially difficult for me to adhere to PrEP—remembering to take a pill daily was hard. It is important that people taking PrEP understand that although it is acceptable to miss a pill occasionally, the medication must be taken consistently for it to be effective. This is when patient accountability becomes relevant.

Patient reminders to improve adherence are fundamental. I had to set up numerous alarms to remind myself to take my medication at the designated time, and my healthcare professional (HCP) and I would engage in discussions at each visit to brainstorm strategies that would work for me to improve and maintain adherence. 

I believe that during follow-up appointments, HCPs should emphasize the importance of taking daily PrEP consistently and encourage adherence by individualizing solutions for each patient.

For example, the most effective solution that my HCP and I devised was setting up a designated timeframe to take the pill. I asked myself, “When would be the most rational and practical time for me to take my PrEP medication?” For me, the answer was either as soon as I awoke in the morning or right before bed at night. Both are times when the bottle could sit next to my glasses on my nightstand, within my line of sight, preventing it from being missed. 

We also agreed that I would maintain a calendar to mark the days I took my PrEP, so I would know which days I forgot. 

It was necessary for me to incorporate PrEP into my daily routine to reduce the risk of not taking it. Once I became used to this change, it became much easier to remember.

Reducing Stigma, Discrimination, and Prejudice
Through my experience in PrEP education and advocacy, I have learned which HCPs in my area embrace PrEP and understand its advantages and significance. Initiating PrEP gave me a sense of control over my own health, and for me it was crucial that my HCP’s care was in line with my personal preferences in order for me to persist in their care and continue on PrEP.

To maintain my independence in matters pertaining to my sexual health, I want our interactions to be free from judgment and bias, regardless of the HCPs’ agreement with my choices. Undoubtedly, entering the healthcare field is a challenging endeavor. Yet it is imperative that HCPs maintain impartiality and refrain from making judgments about their patients’ sexual decisions and encounters.

The primary focus of HCP visits should be on attentively listening to and addressing their patients’ needs. I needed an HCP who emphasized the importance of adhering to PrEP and recognized the responsibility I have in my well-being and medical decision-making. 

Unfortunately, some acquaintances confided in me about their negative experiences with primary care providers when they stated a desire to obtain PrEP as a precautionary measure against HIV infection. These individuals were men who have sex with men. Instead of commending them for their accountability and responsibility for their sexual health, their HCPs criticized them for engaging in sexual activity with men. They were also informed that if they "had a wife," the possibility of contracting HIV would not be a concern and, therefore, there would be no need for PrEP. These examples demonstrate a clear need for greater education among HCPs regarding HIV and PrEP. The presence of bigotry and prejudice among HCPs is unacceptable. It creates an insurmountable obstacle that prevents individuals from accessing healthcare and deters them from persisting on PrEP when it is prescribed.

Your Thoughts?
How do you individualize conversations about PrEP adherence and persistence? Join the discussion by posting a comment.