Who Needs a World AIDS Museum, Anyway?

You’re never too old to learn how terribly ignorant you are. When I first heard about plans for a World AIDS Museum in Fort Lauderdale, FL, some years ago, I might have rolled my eyes a little bit. Who’s going to that? I wondered. Those of us who were there aren’t likely to check it out, at least no more than once. We lived it.

Aside from the irony of someone who has spent his life chronicling HIV dismissing the value of a project that would, well, chronicle HIV, my misgivings were rooted in privilege and a rather myopic view of the epidemic at large.

Terry Dyer, bless him, has heard these questions before, and he’s perfectly suited for his role as Executive Director of the World AIDS Museum and Education Center because he has the patience to helpfully answer them, no matter how many white gay men of a certain age might keep asking them.

“I get that quite a bit, actually,” Terry responded, when I asked him directly about my initial attitude toward the museum. He then became a little more pointed in his explanation. “This epidemic impacts all of us and we have to keep that in mind. It is not an LGBTQ-specific epidemic or virus, it actually impacts all of us, right?”

Yes, the AIDS 101 lesson I was in the midst of receiving from Terry, who happens to be a Black man nearly a generation younger than me, gave me a flush of embarrassment. But he kept on with his point, patiently and without shaming the ageism and racism inherent in my attitude.

“People don’t necessarily know that, five or six years ago, the highest HIV infection rates were among African-American women. And so, with statistics like that, it gets rid of the notion that it is only LGBTQ focused. That’s why our organization needs to continue to exist, to continue the messaging among all demographics.”

The basic education about HIV that Terry outlined is vital to the mission of the museum, and is baked into its name: The World AIDS Museum and Education Center. The museum is hardly a depository for dusty artifacts from the plague years. While it features ongoing visual exhibits of HIV/AIDS history that are free and open to the public, Terry Dyer is most passionate about the outreach they offer to community groups, employers and schools to teach important history and explain the ongoing public health threat on HIV.

Based as they are in Florida, Terry is aware of the State’s muffling of gay and sexual health topics. He’s on the job, working with local school officials and legal minds to confront the legalities of anything that keeps the museum from educating in schools. They also have a busy summer program for students to explore HIV/AIDS through an artistic lens.

My conversation with Terry Dyer could be condensed to simply, “Mark, it’s not about you. It’s about all those other communities whose lives have not been chronicled in the same way, who haven’t had media exposure and television movies, and it is about continuing to carry a message of prevention and support to those who haven’t heard it.”

It takes a certain confidence for anyone to create an organization called The World AIDS Museum and Education Center. I mean, you better have your act together to label yourself in that way. The exhibits I’ve seen at their facility have been impressive, but the passionate outreach embodied by Terry Dyer is where the real value of the museum becomes clear.

“We will continue to preserve the history of the epidemic,” Terry told me, “because younger generations need to know where we’ve been, where we are now, and how we move forward.”

“There’s a lot of gloominess around talking about HIV/AIDS,” Terry concluded, with perhaps a little side-eye toward the kind of attitude I initially displayed, “but there doesn’t have to be. For those who lived through the epidemic, that’s a privilege. With privilege comes responsibility. Let’s figure out ways we can take that and share the message, preserve our history, and make sure younger people are taking care of themselves from a sexual health and wellness perspective.”

For more information on the World AIDS Museum and Education Center, visit their website or stop by their museum location in Fort Lauderdale, Florida the next time you’re in town. I’m betting you will learn something, whether you lived through it or not.

Find out more informa.on here: h1ps://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview

I had the opportunity to attend the third session of Gilead Connexion education series on neurocognitive and mental health issues and aging with HIV. When neurocognitive issues progress it is known as HAND: HIV associated neurocognitive disorder. Dr Sean Rourke, MAP Centre for Urban Health Solutions at St. Michael’s Hospital in Toronto, as the presenter is a clinical neuropsychologist and international expert in the neurobehavioural complications of HIV, in particular HAND. Once again, a person with lived experience was not included and again a panel of people living with HIV who have experienced HAND would have been useful. Dr Rourke, however, made an effort to ensure that the information he presented was simplified and he answered questions from the audience in an honest way.

He began the presentation by describing the cognitive issues that people aging with HIV can face: memory problems, word finding difficulties, concentration, for example. He also identified that there is a difference between mental health and cognitive health. Cognitive health is how we think, learn and remember. Mental health is how we react to the world. There is evidence that people living with HIV experience 2-3 times more cognitive and mental health issues than the general population. CATIE has an article that also speaks to this issue: https://www.catie.ca/hiv-and-aging/mental-health This article points out that the symptoms of HAND can be seen in up to 50 % of people aging with HIV. It also references a study done in Ontario that showed that 40% of the people in their study had depression. The symptoms that they experienced were: hopelessness, fatigue, concentration impairment and feelings of worthlessness.

This article and Dr Rourke strongly encourage people aging with HIV to have a discussion with their doctor if they believe they are experiencing symptoms. The long -term consequences of not supporting ones mental and cognitive health is that people may not take their medications and may withdraw from socialization, further worsening the issue.

What can we do? Firstly, Dr Rourke emphasized the need to be diagnosed with HIV early. Long gone are the days of “wait and see” for HIV treatment. One of the causes of cognitive issues for people living with HIV, especially long-term survivors where medications were unavailable, is inflammation in the brain. The sooner someone who has been diagnosed with

HIV can get on treatment and become virally suppressed, the better. The other factors that can have a positive impact on cognitive and mental health issues: good nutrition, sleep, exercise, quit or cut down on substance use, socialize and keep your brain active. Dr Rourke spoke of the 23 ½ hours “treatment” https://youtu.be/aUaInS6HIGo a video that talks about the importance of getting out and walking at least ½ hour a day. The good news is that we know that the brain is resilient.

Long term survivors of HIV did have their brains exposed to inflammation before HIV treatments were available. But the brain has the ability to recover from that inflammation and rebuild pathways. Getting out and getting in exercise on a regular basis can support this. We know however, that a big barrier to people being diagnosed with HIV and consequently getting on and staying on treatment is stigma. More needs to be done by government to ensure that stigma is not preventing people from being tested and getting the care and support that they need to live their best lives. Food and housing insecurity is also a huge barrier to staying healthy and getting support. People living with HIV need to have the financial support necessary so that they can have access to proper nutrition and housing.

As with many things related to the health and well-being of people living with HIV, we need to start demanding these things. It starts, however, with a conversation with your healthcare provider. Let’s start talking about these issues!