December 1st is #WorldAIDSDay.
A year after being diagnosed with HIV, LáDeia Joyce threw a party.
Family, friends, and coworkers gathered to eat and drink, then sat down for 90 Days, a short film about a young, professional black straight couple who navigated a partner’s HIV-positive status.
At the end of the film, Joyce told viewers that she was HIV positive. “There was a lot of support, but at the same time it made people stop and think,” she said. “A lot of people have told me that it got close to home.”
Despite decades of news that anyone can become infected with HIV, Joyce, now 40, said it was difficult to find people like her – blacks, women, and millennials – who were in the HIV advocacy group when she was diagnosed in 2016.
While African Americans make up only 13% of the US population, they accounted for 42% of the 37,832 new HIV diagnoses in 2018, the highest rate among all races and ethnic groups. Black women accounted for 57% of new HIV diagnoses in women.
Gregorio Millett, Vice President and Director of Public Policy at amfAR, the Foundation for AIDS Research, has worked in his decades of shaping federal policy and through his HIV / AIDS research for the centers with the impact of racist and socio-economic inequalities in the treatment of HIV / AIDS Addresses for Disease Control and Prevention (CDC). He notes that the COVID-19 pandemic has highlighted systemic problems that put certain communities at risk for other diseases, including HIV.
“What you usually hear in these cases is, ‘What are these communities doing that are putting them at high risk?'” Millett said. “That is basically the wrong question. The right question is, ‘What systemic problems are there to ensure that a new disease always reaches the most marginalized communities first?'”
One explanation might be that people of color in the United States are less likely to have access to quality health care, and geographic location may further exacerbate these differences in HIV / AIDS differences and treatment.
Fifty-eight percent of African Americans live in the southern US, and the latest CDC statistics from 2017 show that the south had the majority (51%) of new HIV diagnoses. And black women made up the vast majority (67%) of new HIV diagnoses among all women living in the south.
“Not only are we seeing higher HIV rates in the southern United States, but there are laws and policies that put Black Americans at higher risk for worse HIV outcomes,” Millett said. “More people in these states have no health insurance. Many southern states have not expanded Medicaid under the Affordable Care Act, and the Medicaid expansion has resulted in higher rates of HIV testing.”
Millett also said people living with HIV in states without Medicaid expansion also have less access to antiretroviral drugs, which can suppress the viral load of HIV to undetectable levels and significantly reduce the likelihood of it being passed on to other people. Despite increasing grant funding to help more people afford antiretroviral drugs, the cost can still be prohibitive for many.
A lack of health care providers in many regions of the South and a stigma surrounding HIV / AIDS are also cited as factors limiting access to HIV treatment. The same scenario exists with access to pre-exposure prophylaxis (PrEP), where one pill is taken daily to prevent the development of HIV after possible exposure.
Shortly after the FDA approved PrEP in 2012, a CDC study found that 500,000 African Americans and 300,000 Latinos could have benefited from the drug, but only 7,000 African Americans and 7,600 Latinos actually took it.
A personal fight
Joyce noticed the geographic and socio-economic differences in diagnosing and treating HIV almost immediately. As a diabetic, she had regular blood tests to check her blood sugar levels and was also asked about HIV and sexually transmitted infection tests. Whenever she lived in New York City and Atlanta – two cities with remarkable public health infrastructures for HIV / AIDS – Joyce was always offered an HIV test after a blood draw.
However, when she returned to her home state of Tennessee, she was surprised that she had to take the initiative and ask for an HIV test. Joyce wonders how many other people living with HIV have had a late diagnosis or none at all because of this opt-in approach.
“In the deep south, we have to unpack so much during sex that we can’t even get people to take a test,” said Joyce. “We have to unlearn this harmful psyche and think about sex. [Many] of our states [stress]
Education only about abstinence and we have the highest rates of HIV transmission. It has nothing to do with our habits when it comes to sex, it’s all about our processing and socialization of sex. ”
Tennessee also didn’t expand Medicaid under the ACA. Even though Joyce is privately insured, finding HIV treatment has not been an easy process. After she tested positive, the doctor’s office where she took her HIV test presented her with a letter referring her to the health department for more information. She later learned that the health department only diagnosed HIV and offered no treatment.
Through an Internet search, Joyce found an infectious disease doctor in Memphis, a specialist she describes as a godsend. The doctor who worked in San Francisco at the start of the AIDS crisis, Joyce used an antiretroviral drug that she believed had made her viral load undetectable.
Today Joyce is helping others tackle these inequalities by being the lawyer she hoped to find when she was first diagnosed with HIV. She has used her story to let people know that black women have a disproportionately high risk of contracting HIV, but that they can reduce that risk by having access to drugs like PrEP – and that they are thanks to advances in antiretrovirals Treatment can lead to a healthy life with HIV.
“A lot of people will stop me and pull me aside and tell their stories,” said Joyce. “They will tell me that they wish someone like me had been so open and honest about their diagnosis years ago.”
Resources for the care and treatment of HIV / AIDS
The Centers for Disease Control and Prevention – Resources for People Living with HIV
Women and HIV