A Personal Perspective: PrEP and NBHAAD

Every day, I wake up and take a little blue pill that empowers me. It’s been nearly 3 years since I made the decision to start pre-exposure prophylaxis, better known as PrEP. PrEP is a daily pill that when taken consistently reduces the risk of acquiring HIV by over 90%. Over the years, I’ve learned some valuable lessons about taking PrEP that I’d like to share as we observe National Black HIV/AIDS Awareness Day.

Lesson #1: You don’t know what you don’t know. So Ask!

Much like many other black gay/bisexual men, when I first began considering PrEP, I had an awareness that PrEP existed but I didn’t have enough knowledge to make an informed decision about whether or not it was the right choice for me. Even with limited knowledge, I got motivated. My lack of knowledge would not be my Achilles heel. So, I researched reliable sources, engaged friends and colleagues who were taking PrEP about their experiences, and had a conversation with my primary care provider about whether or not PrEP was right for me. Though my primary care provider had some knowledge, he wasn’t comfortable prescribing the pill to me. He was able to refer me to an Infectious Disease (ID) provider within my network. After meeting with my ID provider, I found that asking questions to a provider who I trusted improved my understanding and quieted any fears I had about PrEP.

Providers can take steps to become more knowledgeable about PrEP through webinars, in-person trainings, and guidelines provided by the Centers for Disease Control and Prevention (CDC). There’s even a PrEP line providers can call for guidance! There is also a free, accredited, online continuing education module for healthcare providers  about PrEP supported by the Health Resources and Services Administration’s HIV/AIDS Bureau.

The power of knowledge shouldn’t be limited to providers though. Patients have knowledge to share with friends and family as well as with their providers who, like mine, sometimes need to learn more about PrEP. Widespread lack of awareness of this powerful HIV prevention tool shouldn’t be the norm

Lesson #2: PrEP is an option, but not the only one.

CDC estimates that more than 1.2 million people are indicated for PrEP. Based upon Federal guidelines, recommendations include anyone who:

• is HIV-negative and in an ongoing sexual relationship with an HIV-positive partner.
• isn’t in a mutually monogamous* relationship with a partner who recently tested HIV-negative, and is a . . .
  • gay or bisexual man who has had anal sex without using a condom or been diagnosed with an STD in the past 6 months, or
  • heterosexual man or woman who does not regularly use condoms during sex with partners of unknown HIV status who are at substantial risk of HIV infection (for example, people who inject drugs or women who have bisexual male partners).

* Mutually monogamous means that you and your partner only have sex with each other and do not have sex outside the relationship.

No matter where you fit in, it’s important to recognize this: One size doesn’t fit all. In my prior work in HIV prevention and treatment, I’ve never told clients: “You should do this.” I’ve always been in the business of offering options, not directives. We have to understand that HIV prevention is a lot like a buffet. Equipped with knowledge about their options, people are free to pick and choose (or not choose) which prevention method(s) work for them. Some individuals are not comfortable with or confident about taking a pill every day. That’s ok. Instead, they can choose to rely on condoms, treatment as prevention, or other effective HIV prevention methods. That’s ok, too. Do what works for you. I believe that no one should be shamed for making choices that empower them.

Lesson #3: Access isn’t equal.

While the number of PrEP users is growing—in 2017, there were roughly 145,000  active PrEP prescriptions in the United States—not everyone has access to PrEP. While some strides are being made to market the HIV prevention pill and improve awareness and access, usage rates among African American gay/bisexual men and African American women—two populations at disproportionate risk for HIV—remain low. Studies have cited factors such as lack of culturally competent care, access to HIV prevention information, stigma, medical mistrust, and perceived racism as barriers that both African American gay/bisexual men and African American women face when it comes to uptake of PrEP.

And, let’s be real, cost and health insurance are also barriers for many. While some healthcare plans cover PrEP prescriptions, there are copays and costs for offices visits and tests that can make it prohibitive for some. For individuals who are insured, the copay cost can vary anywhere from $0 to $300 or more. For those who lack health insurance, the average cost of a 30-day supply of PrEP is roughly $1,300 or more. I have health insurance, but I was surprised by the cost of the prescription. Due to the high copay cost, I delayed starting PrEP for a year until I learned about co-pay assistance programs  for individuals who were insured, underinsured, and uninsured. These programs have made getting and staying on PrEP much easier for me and many others.

More resources are slowly becoming available. Online PrEP locators are becoming available to help individuals locate PrEP providers and services in their area. Local community-based organizations and AIDS-service organizations are hiring “PrEP Navigators” to help consumers overcome access barriers in their state, county, or city (I used to be one of those navigators). In 2017, PrEPcost.org was launched to help PrEP users or navigators identify and compare access to PrEP in Marketplace coverage options.

Lesson #4: We’ve got more work to do.

Times are changing…but we haven’t yet realized the full potential of PrEP. Many are working hard to spread the word about PrEP in their communities. For example, #PrEPForHer was started to increase awareness and access of PrEP for African American women in the DC metropolitan area. PrEP4Love , a digital marketing campaign originating from the Chicago Center for HIV Elimination, uses phrases that help to promote PrEP in a positive way such as ‘Love is contractible’ and ‘Touch is contagious’. Facebook groups , such a PrEP Facts: Rethinking HIV Prevention, created by Damon L. Jacobs, have been created for those who want to learn about PrEP.

Projects funded by the Secretary’s Minority AIDS Initiative Fund such as THRIVE and PRIDE are also examples of what’s being done to bring PrEP and other important HIV prevention services to those for whom it is appropriate and desired. THRIVE is a demonstration project that supports state and local health departments in collaborating with community-based organizations, health care clinics, providers, behavioral health providers, and social services providers to develop comprehensive models of HIV prevention and care, behavioral health, and social services for gay men of color who are at risk for or living with HIV. PRIDE is a demonstration project that supports 12 health departments in implementing two public health strategies, PrEP and Data to Care, to reduce new HIV infections in communities of color among gay, bisexual, and other men who have sex with men and transgender persons.

Even though there is more to do, knowledge is increasing: Even my mom has joined the PrEP bandwagon. Last week, I told my mom I was going to make a run to the pharmacy to pick up a prescription. She asked, “Are you on PrEP?” I replied, “Yes.” Half of me gave her a side-eye for being in my business and the other half was happy because she knew about it and was supportive of my choice to use.

Lesson #5: We ALL can be a resource.

This year’s National Black HIV/AIDS Awareness Day theme is “Staying the Course, the Fight is not Over.” The best way to stay the course is to get educated, then spread the word. Make a commitment to get educated about PrEP. Knowledge gained about PrEP can be used to not only empower yourself but others as well.

*This post was originally published on February 7, 2018, on HIV.gov

Written by Jamal Refuge