No matter who you are, how educated you are, or when you were diagnosed, HIV has a way of forever shifting your perspective on life. And even though I have dedicated my career to advancing the lives and well-being of those living with or at risk for HIV, I must admit something. In general, my life and my livelihood have remained relatively unaffected. Sure, my pill has gotten smaller over the last decade, and I think about the longevity of my life in a whole new way now that I am a parent, but I still rest assured that my treatment will only improve — if not one day be unnecessary.
For those living with HIV who are undetectable and insured, the future looks bright. We are on the precipice of change when it comes to new treatment options that will make less and less of an impact on our daily lives. But I can’t help but feel embarrassed by how little HIV has an impact on me when so many are being left behind by our health care system.
Whether it’s due to lack of access to insurance, the inability to prioritize health due to unlivable wages, or simply the fear of being “found out” that many in more rural, Southern areas face, the equity gap among HIV-positive people is growing by leaps and bounds. And I often wonder this: Is it because people like me (white, financially secure) occupy the space for visibility and we are so focused on PrEP that HIV advocacy has taken a back seat within our own communities?
I get it. Messaging around PrEP is sexy and fun. I follow LGBTQ+ influencers who are often paid by sexual wellness organizations or PrEP delivery companies to ask provocative questions and post flirty/dirty polls about whether their followers are on PrEP, would be on PrEP, or are opposed to PrEP. As you can imagine, this irked me quite a bit. So much so that I finally pushed back on one particular account with over 100K followers.
As I perused through all of the cute Instagram PrEP stories with Ken dolls perched in precarious positions, I urged him to include “undetectable equals untransmittable” messaging so as to not exclude any followers who may either test positive while seeking PrEP or already are positive. I pressed again on another post where he asked his followers whether they prefer being on PrEP or using condoms. I replied that I preferred being undetectable and once again urged him to incorporate some status-neutral messaging. Every message was “hearted,” but there has been nary a mention of U=U to this day.
This is, of course, a very trivial example of a much larger problem, but an example nonetheless. Whether it’s the fault of our health care organizations, our platforms for LGBTQ+ voices, or our desire to focus on PrEP as a much less complicated piece of sexual wellness, who are we leaving behind? Until we have truly normalized what it means to be U=U and grasp the importance of equitable outcomes for those living with HIV, there can be no moving forward. I am not interested in the progress of treatment until it is accessible to everyone.
I am not a representation of HIV; I am a representation of privilege in America. But I am willing to challenge the privilege of those ready to “move on” because we still need every voice in the fight against HIV.
For those proudly a part of the LGBTQ+ community, we cannot claim HIV as our legacy until everyone is able to leave it behind.
Editor at large Tyler Curry is also a contributing editor of The Advocate and the author of A Peacock Among Penguins. (@IAmTylerCurry)