Two decades after effective antiretroviral drugs became widely available for HIV, African Americans still make up 43 percent of new HIV diagnoses. They've also died from COVID-19 at one and a half times the rate of white people.
Longtime activist Phill Wilson has spent four decades fighting HIV/AIDS in Black communities. Unless we learn from our successes and failures with HIV/AIDS, he said, COVID-19 will be with communities of color for a long time.
In 1981, Wilson was a young Black man living in Chicago when his then-partner, Chris Brownlie, went for a physical and learned he had swollen lymph nodes.
"And his doctor mentioned something about this strange disease that gay men in New York and Los Angeles were getting," Wilson said. "And that was basically all he knew. And I mentioned that I, too, had swollen lymph nodes--that I had had them for a while."
Shortly after, a softball teammate of theirs unexpectedly died of the same disease.
The disease would come to be known as AIDS.
After moving to Los Angeles in 1982, Wilson and Brownlie got involved with the AIDS hotline. The American public thought of HIV/AIDS as primarily affecting white gay men. Wilson said that was never an accurate picture of who was dying.
"Now, from the earliest days, you know, Black people represented 25% of the new cases in the U.S.," Wilson said. "Even as early as then, Black women represented over 50% of women diagnosed with HIV and AIDS. So Black people were always disproportionately impacted, over-represented in disease, underrepresented in advocacy, underrepresented in resources dedicated to fighting the disease."
Wilson founded the Black AIDS Institute in 1999. When it was founded, effective antiretroviral treatments were getting to the markets. Black America, however, was being left behind.
The institute began mobilizing Black community leaders, media organizations and other groups to be the messengers for science, and effective disease prevention and treatment.
Wilson was a critical early voice arguing that infectious diseases needed social solutions, not just biomedical ones, said Robert Fullilove, a professor of public health at Columbia University. Wilson did it as a member of a stigmatized group: Black, gay, HIV positive.
Wilson, he said, "found a way to break through all of that."
"You want to look at least as hard at the context that the patient is in before you start making judgments about what should be done and how it should be done," Fullilove said, describing what Wilson did.
Wilson said that the institute's HIV/AIDS awareness campaigns met with success and with setbacks. He learned that breaking through the stigmas of homophobia and HIV positivity required meeting people where they were.
Wilson realized that "there is a fundamental understanding that we are a community...we survived the Middle Passage together. We survived three hundred years of slavery together. When we turn towards each other, we survive, and when we allow folks to tear us apart, we actually suffer tremendously."
In short order, however, Wilson said, "We were able to literally turn every Black media organization in America into an HIV/AIDS information delivery platform."
One of the country's most serious failures in responding to HIV/AIDS was its failure to empower Black leaders to communicate knowledge to their communities, Wilson said. Inequitable health care access and existing medical mistrust also contributed. Those same factors are driving disproportionate rates of COVID-19 infection and death in Black communities, he said.
Raniyah Copeland took over running the institute when Wilson retired three years ago. In addition to addressing HIV/AIDS, the institute is now partnering with the National Institute of Health to educate Black communities about coronavirus vaccines. Copeland says that learning from HIV is critical in ensuring that the Covid-19 vaccines are widely adopted.
"And so really putting the power back in individuals hands, particularly for Black communities, is really, really important," Copeland said. "Mass COVID vaccination is not going to be successful unless we put the work into acknowledging medical mistrust and building up Black leaders across the country who can...help disseminate information directly to Black communities."
The other key measure that public health officials need to understand, Copeland said, is to empower people of color to make their own medical decisions about the vaccine. That involves validating their existing mistrust of medical systems.
"And so, for us, it's about giving people information so they can make decisions for themselves," she said. "So you don't trust the vaccine. Let's actually take a step back. First, we have to affirm, right? This is, you should feel this way, it is completely reasonable to not trust these systems. But then...let's figure out what information you need to make an informed decision."
The HIV community's argument for eradicating both diseases is that the solutions have to be structural. Wilson, Copeland and Fullilove point to several systemic solutions they argue would address the underlying reasons that communities of color get sick and die from viral pandemics at higher rates than white Americans.
"What we need to be doing now if we're going to be serious about either the AIDS epidemic... or fighting COVID-19, we need to be building and strengthening institutions in these communities," Wilson said.
Added Copeland, "And people in HIV have been saying for a very long time, universal health care is prevention. And I think that is so true for COVID."
Fullilove said decarceration is important, too. According to him, in the beginning of the HIV/AIDS epidemic, being incarcerated was an even stronger risk factor for HIV than being a gay man or injecting drugs.
"Prisons and parts of the underdeveloped world represent potential reservoirs where the virus will be able to stay, able to mutate, it will continue to create variants much like HIV does every 1.9 days. And when we don't start doing upstream solutions...COVID-19 is going to be with us."
Wilson turns 65 in a few months. He remembers learning about his status in his late 20s, and his doctor telling him to put his affairs in order. At that point, he made a decision that would transform his perspective on life.
"The dying would take care of itself, that wasn't my job," Wilson said. "My job was to focus on the living."
What Wilson and his doctor had thought would amount to a year turned out to be upwards of 36, and he isn't planning on cashing in his chips anytime soon.
"So I'm glad that instead of focusing on the dying, that I focused on the living, and it's been a journey and a gift of a journey that I'm very, very happy about."