I recently told close friends that when I die, I want a panel made for the AIDS quilt. After quickly qualifying that statement with an “I’m ok physically and mentally” — meaning my viral load is undetectable and my T-cells are in a medically good range, my mental health is sound, and that I have personal plans to be around for quite a long time — I delved into the reasoning behind my decision and why I brought it up during Pride month.
LGBTQ+ history is not properly discussed or taught in mainstream society. And right now, there are significant attempts to erase our basic rights to exist in our country, against the backdrop of so many corporations throwing rainbows around during Pride. The onus is upon us to make it clear that we are and have always been here.
History, as I have seen in my lifetime, can be re-written in a way that erases or sanitizes uglier moments. We now have the benefit of multiple generations of LGBTQ+ people. In this moment, I feel a sense of urgency to gather and protect our collective history while bolstering the next generation of LGBTQ+ and HIV advocates.
I have been living with HIV now for just over 13 years, and I have been openly queer and gay since 1996. I am a Latinx man who is attracted to and intimate with men. I’m not quite a long-term survivor, but certainly not new to HIV. As a solid Gen Xer (who can pass for a millennial, thanks to genetics and SPF 30), I am in the wave of people who acquired HIV after the generation of lives lost in the early days of the pandemic.
In 1996 when I came out, people were still dying of AIDS in large numbers. In October 1996, ACT Up threw the ashes of those who had died of AIDS due to government inaction on the White House lawn. I remember this all vividly because my first exposure to all things gay was news media coverage that showed gay men all living with HIV and the challenges they faced.
My HIV diagnosis happened in 2009, just a few years before the advent of pre-exposure prophylaxis, and sometime after post-exposure prophylaxis went from use with providers to include use with people potentially exposed to HIV. I was fortunate to live in a resource rich community and received high quality care and concurrently while learning more about HIV, realized that so many people in the United States did not have access to this standard of care. This motivated me to want to do more in the HIV advocacy movement.
We are now 41 years into this pandemic, and we know that we have biomedical interventions and other approaches to stop HIV together. Yet the numbers of new HIV incidence remain steady, and marginalized communities continue to be overrepresented in the new data.
Here are some fast facts from the Centers for Disease Control and Prevention. In 2019, 36,801 people received an HIV diagnosis in the United States and territories. In that number, Latinx people account for 29% of new HIV diagnoses while being only 18.3% of the nation's total population. Black and African American people account for 42% of new HIV diagnoses while representing 12% of the national population.
The overrepresentation of these communities in the current HIV epidemic is glaring.
We have a responsibility to continue to make it known that the consistent new HIV incidence and overrepresentation in these communities this should not be something that we simply accept as part of the history and trajectory of HIV. Yes, for people with access to quality health care, HIV can be a manageable and chronic illness, but the people most impacted by HIV are from communities who often face larger systemic barriers that negatively impact their health outcomes.
I feel fortunate in my personal and professional journey with HIV to manage two initiatives at AIDS United that have been founded on the principles of meaningful involvement of people living with HIV that seek to expand the leadership of people living with HIV in the HIV advocacy movement.
People Organizing Positively is about to enter its seventh funding cycle and most recently completed the Hispanic People Organizing Positively pilot. Last year, AIDS United launched Conexiones Positivas, based on MIPA, and rooted in language justice specific to communities of Latinx gay, bisexual and transgender men living with or vulnerable to HIV. These initiatives and other programs at AIDS United and external partnerships continue to seek ways to support innovation in communities that are most impacted.
Our message needs to be loud and clear that HIV is still here. June 27 is National HIV Testing
Day, which is an important opportunity for everyone to get tested and encourage the people in our lives to get tested, learn more about HIV treatment, PrEP and at home testing. Talking HIV with our friends and family (chosen or origin) is how we can start to break down HIV stigma.
Through our partnership with the CDC, AIDS United recently tabled at Annapolis Pride. Due to COVID-19, this year is the first time in what feels like a long time that there have been large Pride celebrations. A young person of about 13 came up to the table and took information on PrEP.
That moment has stayed with me for several weeks for several reasons — most important being that to me it represents hope. Hope in this era of physical, political and ideological attacks on our communities can be something that can keep us going when things get tough. My counterparts who have children often say, "You always want better for your kids."
While I don’t (and likely won’t) have kids of my own, I consider people like that 13-year-old and think “Yeah, I want better for my kids too.”
Julio J. Fonseca is senior program manager at AIDS United. He has been living with HIV for 13 years and dedicated most of those to amplifying the voices of PLHIV. In addition to his work at AIDS United, Julio has served on the DC Commission on Health and HIV, presented extensively nationally and locally, mentored gay men newly diagnosed with HIV, and is recognized as a leader in the Latinx and broader HIV communities.