The undetectable equals untransmittable (U=U) movement has had a life-changing impact on people living with HIV, giving those of us on successful antiretroviral treatment a new freedom and confidence regarding status. But whom does the campaign leave out?
At the 2018 United States Conference on AIDS (USCA 2018) in early September, Mark S. King led a workshop titled "Are We Shaming Those Who Are Detectable?" In a crowded meeting room in Orlando, Florida, attendees from all over the country discussed the hurdles that a person living with HIV can face: accessing care, confronting social stigma, and navigating the medical system and/or the public assistance maze, as well as facing possible mental health issues, pressures from community and family, poverty, addiction, housing issues, and on and on. Usually not just one issue, but a combination of challenges, leads to gaps in care -- and a detectable viral load.
Suddenly, a burly man in the back of the room raised his hand and admitted his truth: "I am detectable," he said. The room fell silent.
That man is Martin Walker, director of HIV programs with Planned Parenthood in Las Vegas. "I walked in a little bit late," he said. "I guess Mark had asked that question before, and nobody raised their hand. When he said that, I realized that somebody needed to say something. Somebody needed to let people know that there are those of us who are detectable who aren't just forgotten or drug using or whatever. That we are, you know, doing our best and sometimes we just don't get there."
Martin sharing his status with the group moved me tremendously, so I approached him after the workshop to find out more about him and his journey with HIV.
"In my youth, in my 20s, I was using a lot of drugs; I had just, kind of, come into that lifestyle," he said. "I was bartending and using a lot of drugs and stuff." Martin said that while living in Denver he was active in the bathhouse scene. "I grew up in the age of Magic Johnson, so I knew what I was doing. I knew that I was placing myself at risk. I knew what the consequences were."
Although he was living a life considered high risk for HIV infection, he wasn't getting regularly tested. "I was really one of those hard-to-reach people, just constantly using and living in bathhouses and that sort of stuff," Martin said. "I was the kind of people that we're all trying to reach, but just having trouble getting to."
He had been crashing on a friend's couch when he was told to leave. He was down to his last $40. "I bought a ticket on the El Paso Juarez Limousine Express from Denver to Las Cruces, New Mexico, which is where my mom lives," he said. "I was going home to my mom's to try and figure it out." Martin had been out of touch with his mom and sister for five years. "My mom had basically mourned my death. Nobody knew where I was; nobody knew how to contact me, so when I showed up it was a pretty big shock." He added, "I was also pretty ill, physically."
His mom is a nurse, and she pushed Martin to get tested for HIV. He was diagnosed positive in February 2003. "I tell everyone whenever I speak about living with HIV, that it's actually the best thing that ever happened to me because it helped me turn my life around. It helped me to stop using. It helped me to want to be a productive member of society and not just die and go away."
Martin started taking care of himself, started taking HIV meds, and his health dramatically improved. "And then I just happened to be at the right place at the right time," he said. "I was at my local AIDS service organization where I got my care, and they were talking behind the desk about needing some people to go and do outreach. I figured I could do that. It seemed pretty simple, so I applied, and have been doing that kind of work ever since."
He worked for 10 years in the non-profit realm, managing different HIV prevention programs and grant writing. Five years ago, he started working for Planned Parenthood. "Work asked me to move to Las Vegas to get programs started there. I'm overseeing all their HIV programs. I'm currently opening a testing drop-in center."
Martin is also in a committed relationship. He's been with Ben for 12 years, married for the last three.
So how does someone who has been healthfully living with HIV for 15 years -- a married man who works for Planned Parenthood (for crissakes!) -- have a detectable viral load?
"When I moved to Las Vegas, I had to change doctors," Martin explained. "Doctors here aren't very good at making phone calls back. I've been here for four months and still haven't been able to see a doctor to get a refill on my prescriptions or get my blood work done. I haven't had blood work done in six months. I'm pretty sure that I'm detectable. I haven't been on meds for two months."
His other options for HIV care aren't ideal for him, either. Larger HIV conglomerates such as the AIDS Healthcare Foundation pose ethical problems for Martin, and he's had unfortunate experiences with hospital systems, as well. "I hate having to see a new doctor every month and giving them my whole sexual history and everything, it just makes me crazy. So, there are other options [than a private doctor], it's just finding the right option and trying to do the right thing [for me]."
Martin continued, "I think it's a bigger systematic problem, right? We've got all these grassroots organizations trying to do a lot of things, and they're getting overrun by the number of people that they are trying to serve. And so things like making phone calls back from the voicemail, or checking the voicemail, or cleaning the voicemail out, that sort of gets lost in the shuffle when you are a small, grassroots organization."
Martin does have a plan of action. He plans on going to the doctor's office -- the one that hasn't returned his calls -- and walking in, hoping to be seen. "I have to plan to become undetectable again, to force myself onto the system and become the squeaky wheel," Martin said. "And hopefully, try to get some awareness around this specific issue."
He said that part of his not seeing a doctor has to do with his own ability to make the time to do it. "I want people to know that my being detectable is not just the system, it's also me," Martin said. He knows that, sometimes, you have to be your own advocate. "Folks need to just keep calling, keep trying to access the system, be the squeaky wheel. Get back to that old '80s-style advocacy that we used to do."
Despite his challenges with getting and staying undetectable, Martin doesn't feel that U=U is stigmatizing. "The stigmatizing consequences of the campaign are mostly self-inflicted," he said. "It's usually those of us who are detectable feeling bad because we're not able to get to [undetectable], rather than people making us feel bad about it."
"I see U=U as an aspirational message," Martin said. "I see it as something I need to keep striving for and not something that I should feel bad about myself for because I haven't achieved it yet."