Word of Mouth
For National Black HIV/AIDS Awareness Day and All the Days After, Actor & amfAR Board of Trustee member Jay Ellis Wants AIDS Awareness to Go Viral
by Chael Needle

Photographed exclusively for A&U by Sean Black

Frederick Douglass is “being recognized more and more,” according to our president. Good to know. The abolitionist and women’s rights advocate, one of the most influential and groundbreaking thinkers of the nineteenth century and beyond, has a lot of wisdom to impart. About the unjust and inequal treatment of those constructed as different in mainstream American society, of course. But also about how education, and particularly self-education about the state of the world, is not often a straightforward nor easy path. Sometimes learning can even be a source of anguish, before it eventually prompts us to free ourselves. We need to keep at it. It’s a process. In Narrative of the Life of Frederick Douglass, Douglass wrote about learning the meaning of abolition: “The light broke in upon me by degrees.”

Awareness by degrees is something we might remember as we mark National Black HIV/AIDS Awareness Day on February 7, because racial disparities in the U.S. still persist. Some progress has been made, but education and action is paramount to improve health outcomes for Black Americans, who account for a third of the 1.2 million people living with HIV in the U.S.

According to the CDC, among Black Americans diagnosed as HIV-positive in 2014, more than one in five had already progressed to an AIDS-defining illness at the same time they learned they were HIV-positive.

Statistics show that, by the end of 2013, only 53.5 percent of all Black Americans living with HIV were retained in care and 48.5 percent had achieved viral suppression, far below the goals set by the National HIV/AIDS Strategy.

There is a bright spot on the prevention front, however. From 2010 to 2014, the difference between the rate of diagnosis for African-American women and white women decreased by almost twenty-five percent.

So, awareness about the benefits of regular testing and knowing your status, as well as the availability of lifesaving medications to treat HIV, needs to be steadfast.

Jay Ellis 13amfAR, the Foundation for AIDS Research, is helping get the word out about the impact of HIV/AIDS on Black Americans and raising awareness about the solutions we have in our toolbox.

Greg Millett, Director of Policy at amfAR, has prepared an essential list: “Six Things You Need to Know for National Black HIV/AIDS Awareness Day” (see link to the article at the bottom of the page).

And amfAR Board of Trustee member Jay Ellis has stepped up to the plate, too, to help with the learning curve.

You may know Jay Ellis, scholar-model-athlete turned actor, from his roles on BET’s The Game and HBO’s Insecure (must-watch TV), or his work on Masters of Sex, Grace and Frankie, and Grey’s Anatomy.

But, as you can tell, he is a change agent who loves a hyphen—over the last few years, he not only started his own youth-empowerment educational foundation and spoke on and moderated a panel at the Obama administration’s My Brother’s Keeper summit, but he has also become a dedicated AIDS advocate. He has participated in campaigns like National Black HIV/AIDS Awareness Day and Act Against AIDS, rode a motorcycle as part of Kiehl’s LifeRide for amfAR, and supported amfAR events such as its Inspiration Gala and the generationCURE Holiday Party.

And to raise awareness and benefit amfAR, Ellis even modeled a Shantell Martin-designed summer beach towel emblazoned with “Be Epic. Cure AIDS.” to help prove that amfAR’s mission can travel anywhere. Over the years, amfAR has made a huge difference in the fight against AIDS, supporting research to develop anti-HIV medications and successful efforts to eradicate mother-to-child transmission. Two years ago, amfAR launched the “Countdown to a Cure for AIDS” research initative, investing $100 million in cure-focused research over a five-year time frame.

A&U recently spoke with Ellis, who graced our cover back in May 2015, about AIDS awareness among Black Americans.

Jay Ellis at the reading of names at a presentation of the AIDS Memorial Quilt on Governor's Island at the end of Kiehl's LifeRide for amfAR in 2014. Photo by Sean Black
Jay Ellis reads the name of his uncle at a presentation of the AIDS Memorial Quilt on Governor’s Island at the end of the fifth annual Kiehl’s LifeRide for amfAR in 2014. Photo by Sean Black

Chael Needle: You have a long résumé with amfAR and AIDS advocacy in general. I know part of your motivation is driven by the memory of your great uncle, who died of AIDS-related causes when you were young, but where does the dedication come from? What keeps you going in the fight to end AIDS?
Jay Ellis: All these young faces out here, all these young men and women across the world, really, but definitely here at home; all these young men and women who look like me, who I know are disproportionately being affected by HIV. And I feel like it’s my responsibility and my duty as a human to look out for my fellow brothers and sisters in any way I can—getting out and banging the drum and making some noise and getting people to understand that this is something that’s affecting us at a high rate, and we need to be aware of it. So for me, it’s about making sure that young people are aware and aren’t putting themselves in harm’s way and are finding out their status.

And what do you think the biggest barriers are that prevent young people, particularly in African-American communities, from knowing their status?
Listen, I think there are a couple different things. There’s stigma—because even just [wanting] to know your status creates this dialogue in your head of things that you may have heard when you were growing up that have affected what you think getting the test means, or [what] having HIV means.

Obviously financial resources can be an issue. Some kids don’t, automatically don’t think that they can get to take a test and don’t know that there are free testing centers. There’s obviously a lack of access to healthcare, which can be a huge barrier.…

And then education and knowing that getting a test, getting a test early., [how to] access a test..just knowing what all those things can mean for you, your loved ones, and other people in your community.

We know some of the drivers of racial disparities among Black Americans and others are going to need long-term solutions and systemic changes in terms of access to healthcare, for example. But what do you feel Black Americans can do tomorrow to be a part of the solution?
First, you get tested. You look up a testing center near you. You tell someone about it, son, daughter, friend, mother, grandmother—whoever it is, you talk about it. The Black community tends to be very word-of-mouth. And I think [HIV] is one of those things that, if we’re word-of-mouth about this, it will spread throughout our community, but we have to be vigilant about it.

Second is learning. The black community also needs to know these statistics and know these rates, and know how large and widespread [HIV] actually is in the community. I’m not sure that it’s talked about enough, which should probably be my third thing. Actually just talking and communicating about it and really getting people to understand that (a) there’s nothing wrong with getting tested, it’s actually a very, very smart thing [to do]; and, then, (b) just because you find out you have HIV it doesn’t mean you have a death sentence and it doesn’t mean that your community is going to look down on you and not let you in, in some way.

So who are your heroes in the fight?
My uncle first and foremost, because I think he’s obviously a big part of who motivated me to be a part of this and finding an end and finding a cure and finding a vaccine.

I’ve been fortunate enough to learn about a few different researchers through amfAR and some of the work they’ve been doing around the world, and those guys, for sure, who work tirelessly in their offices, in their labs, researching and talking with other researchers and doctors around the world so they can come up with cures [are my heroes].

And then, you know, every single person living with HIV and AIDS. They’re my heroes because they get up and go every day, and they keep fighting, and they get up and go to work. And hopefully, no one’s giving up. Everyone sees the mission, everyone sees one thing at the end of the road and we’re all walking towards it. And they’re all walking towards it, as well.

In 2015, Jay modeled the Shantell Martin-designed summer beach towel to benefit amfAR and raise awareness about its Countdown to a Cure initiative. Photo by Marco Ovando
Jay modeling the Shantell Martin-designed summer beach towel to benefit amfAR and raise awareness about its Countdown to a Cure initiative. Photo by Marco Ovando

When you participate in events like LifeRide, do you get positive feedback from your fans on Twitter and other social media platforms?
Yes. It’s one of those things where I know that what I’m doing is a bit of introducing something or talking about something in a community that may have a certain viewpoint on it. So is it ever negative? Absolutely not. I think that it’s always been, “Thank you for getting out there and talking to our youth. Thank you for being a part of the fight. Thank you for being in our community. Thank you.” I always think it always comes from that place. Is it as widespread and as big as I would like it to be? If I post a shirtless picture of myself, it will probably get 20 million more likes than if I post something about HIV and AIDS! And the point I want to get to is that when I post something about HIV or AIDS it gets just as much attention as any other thing that I would post.

I hear you.
And I think that’s for most—I hate the word “celebrities” because I don’t feel like I’m a celebrity—but I think that’s [the same] for most recognizable people. For whatever reason that’s just the way social media works. If you post pictures of yourself. or whatever, it tends to get more interaction as opposed to if you post something that it doesn’t.

When I was reading our magazine’s cover story interview with you to prep, I didn’t see the name of your great-uncle [who passed] mentioned. Do you mind sharing that?
His name was Corky. My Uncle Corky.

Thank you. I just think it’s important to name those who we lost, to keep the memory alive.
Absolutely. So my first LifeRide, Chris Salgardo [Kiehl’s USA President] brought pieces of the AIDS Quilt to Governor’s Island, and we actually got up and read names, and I read my uncle’s name at Governor’s Island [where the 2014 LifeRide ended].

That’s beautiful.
With my grandmother actually there, with his sister, who’s my grandmother, and my younger cousins—I don’t know if they’ll ever remember that [day], they were so young. But I read his name there.

My last question touches on amfAR’s work, particularly focused on cure research. How do you think you’ll react when someone calls you or, maybe in this day and age, tweets you, and says, “We have the cure”?
I don’t know. I know I’ll be beyond excited. I might shed a tear in one eye. I’ll be proud of the work that we’ve done. I’ll be proud of how far so many people have come. I’ll definitely think about all those that we’ve lost along the way, because I think it’s kind of done in their honor, in some way. But I think that underlying emotion will be happiness and joy and excitement, for sure. With exclamation points!!!

To read “Six Things You Need to Know for National Black HIV/AIDS Awareness Day” click here.

For more information, log on to: www.amfar.org and www.jayellisfoundation.org. To learn about National Black HIV/AIDS Awareness events, log on to: https://nationalblackaidsday.org.