We sat down with Damon Jacobs, Licensed Marriage and Family Therapist, HIV prevention specialist and founder of PrEPFacts to discuss the role of PrEP in curbing the HIV epidemic.
Q: How did you get involved in HIV and AIDS advocacy?
A: While studying Psychology at UC Santa Cruz in 1990, I was inspired by a visiting professor and LGBTQ activist Vito Russo, who conveyed the importance of standing up and fighting back against the AIDS epidemic. He was the first person that I knew who died of AIDS—just a few short months after our course ended.
I later moved to San Francisco at a time when our community was hit hard by the epidemic. My academic and professional interest had always been in psychology, yet I could not understand why psychology was training you to sit in an office all day while so much grief, trauma, and stress persisted in the world. It seemed incumbent on me that if I was serious about helping and healing that I get involved in activism and education. I would get out, stand up, fight back and teach to ensure I was doing everything I could to be part of ending the HIV epidemic.
Eventually, my work led me to New York City where HIV vaccine trials were taking place and led me to learn about a new pill that could prevent HIV, Truvada. I became one of the first people to be open in the media about my personal use of PrEP while having sex with multiple partners living with HIV. Sharing that story granted allows me to reach a wide circle of people about the power and potential of PrEP in our world.
Q: AIDSVu recently launched the first-ever maps visualizing PrEP use at the state-level across the country. How can the advocacy community use these maps and data to increase awareness of PrEP and expand its use?
A: The AIDSVu maps provide us with a clear visual that confirms many things we already know and offers data to support it. We are starting to see new infections decline in some communities that have strong PrEP uptake, and I hope that in the near future we can illustrate the direct impact of how PrEP uptake relates to the reduction of new HIV infections. Personally, these maps and infographics will benefit me as a teacher as a tool to reach my audiences through presentation visuals and social media content.
Q: AIDSVu’s maps reveal that the Southern U.S., the region most impacted by HIV, has the lowest rates and numbers of people using PrEP. Why do you think that is? What can people do to change it?
A: That is the million-dollar question. It is a very multi-layered problem, and I want to make a synopsis of the two biggest problems I have seen through my experiences. The first problem is stigma and ignorance from the medical community. There is a lot of shaming, finger-pointing and anti-sex misinformation that physicians are providing to patients. In these communities, poor medical science is being disseminated amongst people at high risk for HIV who could benefit from learning about PrEP the most. This only further alienates people and reinforces the distrust of the medical community that has existed in these southern regions throughout history.
Accessibility is also a key issue. Clinics have limited hours of operation; they can be insensitive to patients and inflexible in their schedules. The populations disproportionally impacted by the HIV epidemic may have long work days and long commutes on public transport.
What do we do to change it? We need to train physicians in comprehensive prevention tools, including PrEP, and encourage collaboration within the medical community. When the medical community is working in tandem with health departments, activists, and local government we can initiate a multi-pronged approach to communication that drives the normalization of PrEP as a prevention option. When information is shared by different sources and in different ways, people become acclimated to ideas that may, at first, seem radical.
Q: What do you see as the role of PrEP in curbing the HIV epidemic among high-risk groups?
A: PrEP offers an opportunity for providers to collaborate with the medical community and to acquire a new toolset. Doctors that I have met are most often managing or treating chronic illness, but PrEP requires a different approach because we are talking about prevention. Doctors are doing health CARE; they are caring for a patient’s wellness. Working with HIV prevention is an opportunity to build relationships and engage in collaboration with their patients to ask how they can help them achieve the healthy lifestyles they strive for.
Furthermore, I have seen PrEP serve as a bridge in talking about pleasure in the gay community in a way that we have never seen before. Normalizing the culture of pleasure and our ability to talk about it with our providers is important in advancing conversations in hard-to-reach regions. Using PrEP as a bridge to initiate this conversation would play an integral role in ending the epidemic.
Q: Having worked extensively with PrEP users, what changes need to be made to decrease individual barriers to access?
A: Increased availability and accessibility to clinics that provide PrEP services, sensitivity training within these clinics, co-pay assistance and barriers to insurance coverage all need to be addressed to increase PrEP access. Improving clinics is essential for reaching the populations disproportionally impacted by the HIV epidemic, and everyone from the person answering the phone to the doctor could benefit from sensitivity training.
Also, co-pays are becoming increasingly costly, and we need data to demonstrate to entities that are offering assistance programs, like the one offered by Gilead or state PrEP Drug Assistance Programs (PrEP DAPs), that there is a need to increase the level of co-pay assistance in the coming years.
People also need to spread awareness of services available to navigate insurance company barriers to PrEP coverage. There are a number of programs that can help individuals navigate insurance barriers yet, people do not know that these resources exist, and they just give up. We need to get the message out there that there is assistance, you can afford it, and you can get access to PrEP.