HIV cases way down, but less so for people of color
Kylon Hooks took a friend’s suggestion for a doctor to see for preventative treatment.
His romantic and sexual partner at that time was HIV-positive. But right from the start, Hooks, a queer Black Chicagoan, was troubled by the practitioner's condescension and failure to listen.
The doctor ignored the monogamous nature of Hooks’ relationship and told him he needed a boyfriend rather than Pre-Exposure Prophylaxis treatment. Also known as PrEP, it is nearly 100 percent successful in preventing HIV when taken properly.
Later, the doctor repeatedly dismissed Hooks’ questions, asking if he had a medical degree.
“That left a sour taste in my mouth with regard to who I trusted with my medical care,” Hooks said. He stopped seeing that doctor three years ago and hasn’t had a primary health care provider since.
“It’s been challenging for me to find someone ... I can really entrust with my health care needs, and who will actually listen to what I'm expressing, as the expert in my own physical and sexual health,” he said.
Hooks sees the situation as a disheartening example of why Black and Brown people – especially those in the LGBTQ population – sometimes distrust the medical community.
Experts in the HIV field agree that that lack of trust contributes to people of color facing much higher rates of infection and death related to the disease. This is happening even now, decades since HIV became highly treatable and virtually preventable with the access to quality health care.
Less than a decade before the AIDS crisis, the U.S. government was involved with at least one study using Blacks as untreated test subjects.
In the Tuskegee Study of Untreated Syphilis in the Negro Male by the U.S. public health service and Tuskegee Institute in Alabama, 600 mostly low-income and illiterate Black men without informed consent served as subjects in exchange for free meals and health care. The 40-year study offered no treatment for the disease even long after penicillin was available.
Then there’s the AIDS epidemic itself, which drew little government attention and funding early on – largely because most of those who suffered were gay men.
John Peller is president and CEO of the AIDS Foundation of Chicago. He notes that throughout the four-decade history of the epidemic, Black people have accounted for about half those living with HIV.
There were nearly 1,300 people diagnosed in Illinois in 2021, and almost half were Black, according to the Illinois Department of Public Health. That year, 55 percent of people with HIV who died were Black and mainly gay men.
“When we talk about the HIV epidemic today, it's critical for us to have really in the forefront of the conversation the fact that while we're seeing declines in new HIV cases, among all populations, not all populations are seeing equal declines,” Peller said. “And in particular, Black and Latino folks are not seeing new cases go down at the same rates as white people.”
The Chicago Gay Men’s Caucus has a mission to improve health equity for a community that is Black and Brown and gay, bisexual and transgender men.
Dr. Keith Green, executive director, said, “It is both sad and frustrating given that we are 40 years into the epidemic at this point and we still are facing a lot of the same challenges and barriers with respect to engaging our community, ensuring that our community is knowledgeable, ensuring that folks have access to the tools that they need to stay healthy and to stay HIV negative or to take care of themselves despite the fact they are HIV positive.”
Peller points to policy-driven systemic racism as a major factor driving the higher rates of illness in Black and Brown communities.
“Think about segregation in Chicago, which … has created segregated neighborhoods where people who are Black and Latinos don't have the same access to … let's just start with doctors’ offices or pharmacies or healthy food,” he said.
Meanwhile, their white counterparts tend to have better jobs and schools, he says. And the higher rates of incarceration under the failed war on drugs also had a disproportionate effect on Black and Latinx people, making them more vulnerable to HIV.
Peller’s colleague, Dr. Cynthia Tucker, a vice president at the AIDS Foundation, said there are inequities in health services, care and treatment for people of color, which has to do with race, housing insecurity and underemployment, she says. That is intersected with gender, sexuality, and social status.
"Black and brown individuals really have more disparities, more challenges, more trauma and more stigma. If I am homeless, I am worried more so about my safety, and more about where I'm sleeping, and not necessarily about HIV. And so therefore, I become more susceptible ... because I'm not on treatment," she said.
Green said, “Access to culturally appropriate and affirming health care is limited for Black and Brown, gay, bisexual, and same gender loving men.
“There's affordability and access to insurance and those kinds of things on the front end. And then once you get into [a] medical provider’s office, you've got to also … hope and pray that that provider … can provide services that cater to all of who you are. So that includes your sexuality, and the way that you engage sexually,” he said.
Another exacerbating factor is an increase in drug use in the community Green serves, he said. “The long-term effects of trying to survive and thrive in the context of the pandemic certainly takes its toll on folks and has taken its toll on folks.
“I think that we can't overlook what's happening as it relates to substance use and abuse within our communities if we're really going to address and end the HIV epidemic.”