I will never forget the day my mother asked me, “Is there something you want me to know about you?”
Mom wanted to know if I had HIV.
She had just attended her first HIV educational program. She learned about the virus and how important being in care is to ensure that a person with HIV remains healthy. She was armed with new knowledge, but she was also my mom. She knew how important it is to support the ones she loves.
In that moment, I was caught off guard. She was ready. She was opening her mind and her heart for me to share the one thing I feared most to share. Could I do it? Could I finally disclose to her that I have HIV? I did.
It changed everything.
The support of a mother, father, sister, brother, uncle, aunt or cousin can be lifesaving to a person facing HIV. Unfortunately, the drive to know your status, and the crucial need to start and remain in care, are all too often blocked by the stigma of HIV. Even today, after nearly 40 years of the epidemic, there remains intense fear that once you know you have HIV, your relations with others—especially your own relatives—will change. I heard that very story this week from a black man with two advanced degrees. He was still afraid to tell his own mother that he had HIV.
HIV stigma in the black community remains one of the biggest obstacles to knowing your status and getting into and remaining in care, right up there with lack of housing, lack of transportation and lack of affordable health care. The result of these barriers is fierce.
Today, barely 30 percent of black people living with HIV are consistently on HIV-treatment regimens to achieve a suppressed viral load. Yet achieving viral suppression is the gold-standard indicator that you will have a healthy, normal life span. Rural communities in Botswana, Uganda and Kenya have attained viral-suppression rates that are as much as three times higher than those of African Americans. But only 37 percent of African Americans with HIV are being prescribed HIV-treatment medications, and only 40 percent are accessing HIV medical care. And despite being only 12 percent of the U.S. population, black people account for over 40 percent of all Americans living with HIV, and nearly half of the 50,000 new infections in our country each year.
How can we urge our people to know their status and get and remain in care if we are silent about our support for them? We can start by being aware of what we say and what we do. More importantly, we need to start being aware of what we have not said and what we have not done.
How was your last appointment? Are you taking your medications? How can I help you stay healthy? Did you get your test results? We ask those questions openly of our family members and friends facing diabetes, asthma and even heart disease. With HIV treatments making it possible to live a long and ordinary life, and with pre-exposure prophylaxis, or PrEP, medications reducing the risk of infection by more than 90 percent, isn’t it time we made talking about HIV a normal part of our lives?
My mother told me she loved me. That was the most important thing she said. The very next week, she began sending me in the mail visible signs of her encouragement that I stay healthy. What signs do you show, what words do you say, that show us that we will not be stigmatized, shunned or judged by you?
Today, on National Black HIV/AIDS Awareness Day, be aware of what you have not said. Be aware of what you have not done. The burden of disclosing our status is heavy. Each time someone hears that we have HIV, the response is never the same. But it is so much easier to try if we know and believe that you are safe for us.
Be a safe place to hear about our journey and its costs. Be a safe space to encourage us to get tested, to stay in care, to protect ourselves and others. Don’t just hope that we think or believe that you are on our side. Prove it with your words and actions.
Every person living with HIV wants and needs the support and love of the people he or she loves and holds dear. We once told people at risk to be safe. It is now our request of you. Be a safe space for people with HIV. Your safe acts and safe words may encourage us in ways you may never fully know. They might just be the very things we have hoped most to see and hear from you.
The Root aims to foster and advance conversations about issues relevant to the black Diaspora by presenting a variety of opinions from all perspectives, whether or not those opinions are shared by our editorial staff.
Jesse Milan Jr. is president and CEO of AIDS United.