IAS 2019 – Personal agency is central to ending the HIV epidemic

Damon Jacobs, PrEP Educator and Advocate

Personal agency is central to ending the HIV epidemic

PrEP advocate Damon L. Jacobs explains why agency -- the personal freedom of choice and equal access -- is critical and how access to information and research is an essential component.

Damon Jacobs, PrEP Educator and Advocate


My name is Damon L. Jacobs, and I’m a licensed marriage and family therapist in New York State.

A lot of the science that’s coming out just really builds and validates on what we know and what has been proven and validated. And gratefully, now, what the U.S. CDC has acknowledged on their page: That PrEP is 99% effective when taken as directed by people of all genders, of all races, of all sexual orientations.

To be able to hear people continue to validate the research and science that we have – and really think about what that means in terms of trusting this as an intervention is very powerful as well as the science and data that supports U=U, otherwise known as treatment as prevention.

This term “agency” is so important in ending the HIV epidemic. Whether we’re talking about PrEP or whether we’re talking about a person living with HIV using TasP or U=U. Basic to that notion is the idea that all people deserve access to accurate info and facts. So that they can learn what sexual health decisions are right for them. And then have a conversation, ideally, with a provider, or a prescriber about what choices they’re making.

I started a group on Facebook on July 1, 2013, and the intention behind that was to create a community that prioritized facts over fears, science over stigma, data over dogma. And giving consumers an opportunity to learn their choices. And to have discussions and yes, sometimes debates, about these new biomedical interventions that can really enhance the quality and quantity of our lives. As well as enhance the experience of sexual pleasure and connection.

I really bring home that last point, because for much of my career that has been left out of the conversation. About how significant and meaningful sexuality is. And how sacred, spiritually and sexually, semen exchange matters for so many people. Hey – we all got here because somebody exchanged semen with somebody. So when we leave that out of the conversation, we’re leaving out a lot. This opportunity to include that, as part of agency, as part of choice, as part of being proactive, responsible and empowered about our pleasure and protection, it opens up this new vista of enthusiasm and excitement that I’ve never seen in the HIV prevention community before PrEP.

And then it also really helps the consumer stay adherent. Adherence is very important for PrEP to work, whatever regimen or strategy they are going to use, it’s really important that they use one they can stick to. When consumers are making that choice from a place of agency and empowerment, they are so much more likely to stick with the regimen they use in order to prevent HIV.