HIV care fell in Black communities during COVID. Here’s how Congress can get it back on track.

Fears about undiagnosed or untreated HIV cases in Black and Latino communities are rising after the pandemic led to plummeting numbers of tests for HIV and prescriptions for HIV drugs. 

The medical community is worried that thousands of people simply put off getting tested or getting care during the pandemic and that many cases of HIV have gone undetected as a result. 

Because Hispanic and African American men have accounted for a disproportionate number of infections, undetected cases could particularly be an issue in those communities. 

“We need a program that prioritizes racial and ethnic communities,” said Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. “We need community outreach and provider outreach everywhere, but specifically we need the funding to go to Black and Brown communities.”

In June, the House proposed a $225 million increase in funding for HIV testing and prevention as part of the Ending the HIV Epidemic Initiative, a program created under the Trump administration that aims to reduce new HIV infections by 90 percent by 2030. 

That funding was in addition to a proposed $75 million increase to the Ryan White HIV/AIDS Program and $200 million more for the National Institutes of Health’s AIDS research. 

But some advocates argue the proposals don’t go far enough — nor do they focus on those most at risk. 

In June, 100 organizations including the HIV+Hepatitis Policy Institute signed a letter to Congress requesting the creation of a national PrEP program. 

PrEP, or pre-exposure prophylaxis, lowers the risk of contracting HIV by 99 percent. It received Food and Drug Administration approval in 2012 and can be found in a pill and injectable form. 

President Biden’s 2023 budget included a 10-year proposal for $9.8 billion in mandatory spending for a national PrEP program, which could be vital to closing racial health care disparities in HIV treatment.

In a statement to The Hill, Rep. Barbara Lee (D-Calif.), co-chair of the Congressional HIV/AIDS Caucus, said funding for a national PrEP program is “critical” and called on Congress to reprioritizes investments “away from things like our bloated pentagon budget and toward healthcare and social safety net programs to better serve all our communities.”

“The CDC has the authority to implement PrEP services we are calling for,” Lee added. “We are in discussions to determine how we leverage pre-existing HIV/AIDS infrastructures to meet the current moment while addressing gaps within the system. We have the tools to end the HIV epidemic by 2030 but we must have the political will to do so.”

The Centers for Disease Control and Prevention estimates that out of the 1.2 million Americans who would benefit from the medication, only 25 percent are taking it. 

And the racial disparities within that 25 percent are staggering. 

PrEP use is highest among white people (66 percent of users), but lowest with Black Americans (only 9 percent of users). Hispanic users only account for 16 percent of PrEP users. 

The letter said it was “no coincidence” that Black and Latino communities are the same populations that are disproportionately uninsured.

These numbers also indicate a lack of culturally relevant messaging in high-risk communities, argued Victoria Kirby York, deputy executive director of the National Black Justice Coalition. 

“A big part of the marketing strategy is focusing in on gay enclaves, where it’s mostly white gay men,” York said. “To get more Black people talking about it and knowing about it, you have to market where Black people live. You have to advertise in Black media publications.” 

That includes creating more televised ads that depict Black PrEP users, too. 

In the letter to Congress, advocates said investing $400 million into a national PrEP program would save the federal government money in the long run by preventing the spread of HIV and therefore lowering health care costs.

The program would provide grants for purchasing medications, labs, support services like counseling and adherence, and outreach and education services. It would run out of agencies including obstetrics and gynecology offices, domestic violence organizations and local health departments. 

But Grazell Howard, chair of the Black AIDS Institute, pointed out many within the Black community don’t perceive those offices as trusted sources.

“The woman … is the key influencer in our culture,” she said. “We need that mother, that feminine person, out there understanding protection and care.”

And messaging for women is now more important than ever. 

While Black men are 8.1 times more likely to contract the disease than their white counterparts, recent studies have shown Black women are now one of the largest growing populations to be diagnosed with the disease. 

The rate of infections among Black girls and women between 13 and 24 years old is six times higher than that of Hispanic women and 20 times higher than white women.

Howard attributes those numbers to inaccurately targeted messages from the 1980s and 1990s. 

“We jumped to young [men who have sex with men] and transgender Black women,” said Howard. “By the time Black people realized that you didn’t have to be gay, it was too late.”

But some of that stigma persists within the Black community. 

“You have stigma around sexual orientation but also sex in general,” said York. “We have a community where sex is talked about a lot in songs and music but when it comes to actual conversations in the community, it’s a little bit more taboo of a topic in certain spaces.”

Howard said Congress could help dismantle that stigma by normalizing testing for HIV in the same way it did COVID-19.

“We figured out an innovative way to get home testing and accurate PCR testing all over the community. There’s even culturally appropriate screening done,” said Howard.

That same innovation needs to be applied to HIV screening, Howard said, starting with at-home HIV tests being sent into the most high-risk ZIP codes the same way COVID-19 tests and vaccines were.

“Decades of HIV research and infrastructure contributed to expediting the development of COVID-19 vaccines and distribution,” said Lee. “In turn, we need to ensure that our system of care and our policies evolve with the lessons we learn. In addition to at-home testing, we must prioritize HIV education, research, innovation, and access to high quality care no matter your race, ethnicity, sexual orientation, or ZIP code.”

But another part of de-stigmatization in Black communities is education, York said, and that education is not up to par.

There is no federal curriculum for sex education, and only 11 states require HIV education to be covered in schools. That, coupled with cultural norms, means there is no talk about the importance of protection and how to properly use it or even what kind of medication and therapies are available.

“I grew up knowing about sex and HIV, they were a part of education programs in our schools,” York said. “Now, there are a number of states that it’s outlawed. We have to make sure we’re finding other creative ways to make sure that we’re all in conversation about how we are addressing our sexual and reproductive health.”

One way to do this is with telehealth services, which expanded rapidly during the COVID-19 pandemic. 

But there are some restrictions that come with telehealth, such as cross-state licensing.

York said the government could focus on easing some of those restrictions to allow patients to find culturally competent providers. 

“If you live in an area where there aren’t any doctors who are culturally competent when it comes to the LGBTQ community or who might have bias against our community, it’d be ideal to call a doctor in a neighboring state and to have a telehealth appointment,” she said. “They can send the prescription over to your neighborhood pharmacist, you can pick up the drug right across the street, and you got a chance to meet with someone who you didn’t feel was going to discriminate or stigmatize you for asking about your sexual health.”

Updated on July 26 at at 10:19 a.m.