The HIV epidemic continues to effect Black men who have sex with men at alarming rates. As Plus previously if those rates coontinue half of all Black gay and bi men reported will have HIV by the time they're 35. But while today’s generation of HIV-positive people are living long and healthy lives, social stigma hovers over us like a dark cloud. But African-American men like Romano Johnson know how to fight both assumptions and social stigma to rise from the ashes.
Romano Johnson was diagnosed with HIV in 2008, after moving to New York City to pursue his dreams of becoming a performer. When his doctor at Housing Works recommended him to Amida Care, New York’s largest special needs plan for people living with chronic conditions like HIV. Amida was so critical to his treatment that he was soon elected to the organization’s Member Advisory Council, a group that voices concerns and needs of members, and helps leadership improve programs and services. Today Romano is a singer, performer, and activist who also works as an outreach advocate in order to educate young people on the services that are available to them.
Tell us about your early life and HIV diagnosis.
My family and I moved to the U.S. from the Bahamas in search of a better life. Since a young age, I’ve been involved in the arts, music, fashion, and entertainment. As a young adult, I started exploring life a little more and got into things that weren’t the way I had planned my life. I wish that I knew the things that I know now about HIV — it’s hard to tell a teenager something and make sure it sticks in their brain. If I could, I would take what I know now and apply it to my younger life.
How did you discover your passion for music?
I grew up in church, and music was always a big part of my life. In the Bahamas, the culture is filled with music. I used to watch the Apollo on TV as a kid and made it my goal to perform there when I moved to the U.S. In August 2000, I made my dream come true and was the Apollo winner [at Live at the Apollo]. It made me feel like I can accomplish anything.
What are your career goals?
I’m currently living my goals. I’m an “artivist” here in NYC, and I’m involved in my community advocating for things I’m passionate about, such as youth homelessness. I can tell stories and heal through music. I hope to continue having these important conversations through music. This work is so important to me, and it’s something I want to be part of my life forever.
Johnson performs “Redemption Song” by Bob Marley
How did you find Amida Care? How are you involved as a member?
When I moved to New York, I was just looking for a plan that would pay for my medications. I was referred to Amida Care, and it quickly became more than just an insurance plan that covered my prescriptions. It became part of my lifestyle and my family, helping me evolve into the person I am today. Amida Care has given me opportunities to see the ins and outs of how things work for our benefit – a humbling experience. I’m now serving on its Member Advisory Council, because I felt the best person to represent myself is me. I’m also serving on its Board of Directors for my fourth year, representing the members in a way that other insurance companies rarely let members get involved in. I’m on the same board as the CEO, voting for things on behalf of people that are affected the most.
What is your favorite thing about being an Amida Care member?
Amida Care has empowered me to have control over and understand my life. I have a personal relationship with my doctor, and if I need any type of special service, I have a plan that will most likely be able to cover it.
Have you dealt with challenges since being diagnosed with HIV?
When I was first diagnosed, my immigration status at the time could have prevented me from accessing medication. I thought, “I may die from this because I’m not considered to be an American.” Thankfully, I was able to access medication through the AIDS Drug Assistance Program (ADAP). Not knowing whether or not I’d be able to take these medications was very emotionally challenging for me.
Has your medication regimen changed since you were diagnosed?
The first few medications I was on were very harsh and the side effects were constant. Last year, I finally switched to Trimeq, and I’ve had no side effects. I’m undetectable now and my CD4 count is great. Now my health is under control.
What would you tell someone who just found out they are HIV-positive?
We are living in a time where HIV will soon no longer exist. You will live a long, healthy life if you choose to take care of yourself. Dedicate yourself to living.
What should young black men know about HIV?
Young men who have sex with men (MSM) need to educate themselves beyond just knowing how to use a condom. Everyone must know exactly how HIV is transmitted. It’s easier than ever to prevent getting HIV in 2017. If you’re positive, take your medications and become undetectable so you have little to no chance of transmitting HIV. If you’re negative, take PrEP and learn about how to prevent getting the virus.
Why is advocating for people with HIV important to you?
I feel like I’ve been placed in a position to be a light for other people. I want others to say, “If Romano can do it, I can do it too.” It’s important to fight for inclusion — I feel like you can be anything in America but a gay Black male. I want to stand up for others who can’t. I’m not afraid of tomorrow anymore, because I feel I’m really prepared to face what happens tomorrow and for the rest of my life.