A pill could end the HIV epidemic. Why do so few Mississippians take it?

This story is part of “Uninsured in America,” a project led by Public Health Watch that focuses on life in America’s health coverage gap and the 10 states that haven’t expanded Medicaid under the Affordable Care Act.

Jermany Gray worked up the nerve to ask his doctor about preventive medication for human immunodeficiency virus, or HIV, at his last check-up before leaving Jackson to go to college. 

He knew that for someone like him – a young, Black, gay man living in Mississippi – the odds of acquiring HIV were alarmingly high. 

In 2016, when Gray was a sophomore in high school, Centers for Disease Control and Prevention researchers estimated that if current HIV rates persisted, one in two Black gay or bisexual men would be diagnosed with the virus in their lifetime. 

As college approached, he wanted to take his health – and his future – into his own hands. He asked his doctor to prescribe him pre-exposure prophylaxis, or PrEP, a highly effective medication that people who are not living with HIV can take to protect themselves from the virus. 

But she refused to write the prescription and instead recommended that he abstain from having sex. 

The bravery and excitement Gray had built up dissipated. “I kind of went back into my shell,” he said. 

Gray’s experience isn’t an anomaly. Thousands of Mississippians with risk factors for HIV don’t take PrEP due to insufficient provider education, lack of awareness, stigma, affordability and limited access to health care. 

Closing the gap

PrEP, which was approved by the Food and Drug Administration in 2012, blocks HIV from replicating in the body and has a 99% efficacy rate for preventing transmission by sex and a 74% efficacy rate for people who inject drugs, according to the CDC. 

Epidemiologists and public health experts agree that getting the medication into the hands of people who need it most is critical to curbing the domestic HIV epidemic, which drags on with over 35,000 new diagnoses each year – in spite of scientific advances in prevention and treatment. 

Expanding access to PrEP is a national public health challenge. But Mississippi is the farthest behind the rest of the country in reaching people who could benefit from the medication. 

“States that have made more progress in getting PrEP to the people who would benefit from it are the same states that have experienced greater declines in HIV diagnoses,” explains Patrick Sullivan, an epidemiologist at Emory University whose research focuses on HIV prevention.

His research indicates that gaps in PrEP coverage are the most pronounced in states that have not expanded Medicaid – the policy intervention experts widely agree would be the most impactful intervention to increase PrEP coverage. 

Medicaid expansion would alleviate the cost concerns and barriers that prevent many low-income and uninsured people from accessing health care services, said Dr. Leandro Mena, a clinician-researcher with expertise in prevention of HIV who spent many years of his career in Mississippi and is currently a professor at Emory University. 

For over a decade, Mississippi has opted not to expand Medicaid to make health insurance available to more low-income adults in Mississippi. Expansion would result in 200,000 uninsured Mississippians gaining coverage and more low-income people seeking preventive care, said Khayla Scott, program manager for Mississippi Health Advocacy Program.

States that have expanded Medicaid are evidence of its impact, said Sullivan. His research shows that the number of PrEP users is 25% higher in states with Medicaid expansion, and 99% higher in states with PrEP drug assistance programs, or state-run programs to pay for medication and associated costs of care. 

“It suggests that there are policy options that improve access to PrEP and utilization of PrEP, and probably a lot of other preventive services,” Sullivan said.

For Gray, moving to Louisiana for college was a turning point in his journey to get on PrEP. There, he had a doctor that was willing to prescribe PrEP and instantly qualified for Medicaid coverage.

Getting on PrEP in Louisiana was “really forgettable, because it was that easy,” he said. 

Medicaid not only covered Gray’s medication, but also his quarterly labs and appointments, which can be expensive. Under federal law, Medicaid plans must cover preventive services like PrEP, clinic visits and lab tests with no cost sharing. 

Gray was able to get coverage because Louisiana expanded Medicaid in 2016, and while the state’s PrEP uptake, too, has been slower than the rest of the country, its rate of PrEP users is double that of Mississippi. The state has seen a noticeable drop in new HIV diagnoses since 2014.

When Gray returned to Mississippi after graduating, he found that accessing PrEP was again difficult – even with private insurance. His current plan doesn’t cover the name-brand PrEP he was previously prescribed, and he now has copays for the medication and routine testing. 

It is impossible to know how many HIV infections might have been prevented if PrEP was used more widely in Mississippi — or if the state had expanded Medicaid at any point since 2014, when it first became an option and two years after PrEP was approved for use. But Mississippi’s slower PrEP uptake compared to the rest of the country may have contributed to its modest decline in new HIV cases.

HIV rates have ticked downwards in the United States since the late 1990s. But cases remain especially high in the South, where half of all new HIV diagnoses occur each year, and where most states have not expanded Medicaid.

Mississippi has remained in the top 10 states for HIV incidence for over a decade, and today about 10,000 Mississippians are living with HIV. The state’s new HIV diagnosis rates have fallen over the last two decades, but at a rate slower than the nation as a whole.

People living with HIV in Mississippi are the least likely in the country to receive timely care or achieve viral suppression, which can also contribute to higher transmission rates. Viral suppression means that the amount of the HIV virus in the body becomes undetectable, which keeps people healthy and prevents the transmission of HIV to others. 

Just 53% of Mississippians are connected to specialized HIV care within one month of their diagnosis, compared to a national average of 82%.

“We have so much work to do,” said Kendra Johnson, the director of communicable diseases at the Mississippi State Department of Health, who took the position last fall. 

‘The era of PrEP’

In 2011, June Gipson became the chief executive officer of My Brother’s Keeper, a HIV prevention and treatment nonprofit in Jackson. She could tell that the world of HIV advocacy was changing. 

“I knew things were different, but I couldn’t quite put my finger on what was happening,” she said. 

It wasn’t long before she pinpointed the shift: “the era of PrEP” had arrived. 

The behavioral HIV prevention interventions My Brother’s Keeper had focused on – “condoms and comfort,” and “testing and hand-holding,” in Gipson’s words – were no longer the most effective methods for preventing HIV, leading the organization to launch Open Arms Healthcare Center, one of the state’s largest PrEP providers, in 2013.

The University of Mississippi Medical Center, another major provider of PrEP and HIV care and the state’s safety net hospital, declined to grant Mississippi Today an interview with the medical director of the hospital’s adult special care clinic, which offers HIV treatment and preventive services.

PrEP usage has accelerated fifty-fold across the country in the last decade, surpassing half a million people who take the medication. 

Mississippi, too, has seen improved uptake. Since 2018, the number of PrEP users in Mississippi has nearly tripled, reaching 1,800 users. 

But a statistic that estimates whether the medication is reaching the people who need it shows Mississippi still lags behind other states. 

Researchers studying HIV prevention compare the number of people who take PrEP with the number of new diagnoses in a population – called a “PrEP-to-need” ratio – to identify whether the medication is being equitably distributed across geographic areas and groups. A high PrEP-to-need ratio indicates that PrEP is being utilized well, while a low PrEP-to-need ratio suggests that a population has less adequate coverage. 

The PrEP-to-need ratio in the United States is 13, meaning that for every new HIV diagnosis, there are 13 people who take PrEP. But in Mississippi, the PrEP-to-need ratio is four, demonstrating the lowest coverage rates compared to need in the entire country. 

And data shows that even within Mississippi, PrEP is not reaching all communities equally.  

Black Mississippians are diagnosed with HIV at a rate five times that of white residents, while Hispanic Mississippians face rates four times higher. But together, Black and Hispanic Mississippians make up only 54% of PrEP users in the state. 

And among Black and Hispanic Mississippians, just two people take PrEP for each new diagnosis, demonstrating a notable racial disparity in access to the medication. 

Will Holt, the special populations program manager at Coastal Family Health Center, a federally-qualified health center in Biloxi, said he sees this discrepancy reflected in his clients. Most of his white patients are receiving PrEP, while most of his patients living with HIV are Black. 

“It is very disheartening,” he said. 

Serving communities equitably isn’t only an issue of fairness, said Sullivan, the Emory professor who studies HIV prevention. It’s important to focus PrEP in the places where it will be most impactful to halt the spread of HIV. 

“We have the tools that we need to end the HIV epidemic now,” he said. 

Barriers to access

Experts say that Mississippi’s high HIV rates and low PrEP uptake are steeped in the same barriers that thwart many Mississippians’ access to health care – poverty, rurality, racism, poor public health infrastructure and high uninsurance rates – all of which are linked to being a state without Medicaid expansion.

“Many of the communities at highest risk for acquiring HIV have more limited access to the health care system,” explains Sullivan. 

The systemic barriers that prevent people from accessing care are then also worsened by the stigma that surrounds HIV and a lack of education about PrEP and HIV among patients and providers alike that prevents people from accessing care.

Although primary care providers can prescribe PrEP, many don’t — often due to a lack of training or familiarity with the medication. 

Many providers are uncomfortable discussing sexual health with their patients, which prevents important conversations about sexual activity and HIV testing and prevention options from occurring, said Mena, the clinician-researcher and Emory University professor. 

“I don’t think we’ve trained our health care professionals adequately to really overcome the cultural challenges that we grew up with in a society where sex is something that we don’t talk about,” he said. 

Advocates say that a lack of patient awareness of PrEP can also prevent important conversations between patients and providers from occurring. Mississippi’s sexual education law allows schools to teach an abstinence-only curriculum, which does not include information about HIV prevention methods beyond abstinence.

Many Mississippi students come to college without any sexual health education, said Maggie White, a nurse practitioner at First Horizons Health Center in Starkville, where Mississippi State University, one of the state’s largest public universities, is located. During appointments, she often finds herself focusing attention on teaching students about safe sex and condom use. 

“They don’t know anything (about sexual health),” she said. “…They’ll come in for sinus stuff, and then start asking other questions.”

A lack of representation in messaging about HIV can also play a role in the dearth of education about PrEP. Many people assume based on advertisements for PrEP that it is a drug exclusively for gay men, which can lead them to feel like it isn’t for them, said Holt. 

“It takes time and a lot of education to address biases that exist both in the provider side but also in the consumer side,” said Mena. 

‘A major setback’

In 2019, President Donald Trump unveiled a national initiative to quell the domestic HIV epidemic by 2030 by pumping millions of dollars to areas with high infection rates, choosing Mississippi as one target area. Increasing access to PrEP was one of the cornerstones of the plan.  

To meet the administration’s lofty goals, the state would have to reduce its new diagnoses by 75% in five years and 90% in a decade. 

New diagnoses in Mississippi crept down 5% in the first three years of reported data – far from keeping pace with federal goals. Other states, too, struggled to keep up as COVID-19 spread across the country. 

The Mississippi State Department of Health published its plan to accomplish these objectives in 2021, laying out detailed strategies for increasing PrEP access. Goals for the first year of the plan included routine HIV testing for Medicaid recipients, the creation of a statewide education campaign to discuss the availability of PrEP and hiring staff to train clinicians at high-volume clinics. 

But the state’s efforts to increase PrEP coverage as a part of the initiative were stalled for years as an understaffed public health department struggled to battle the COVID-19 pandemic and skyrocketing syphilis cases.

The health department saw a 10% decline in staffing capacity from 2021 to 2022, according to data from the Mississippi State Personnel Board. 

The agency’s HIV division was left “severely understaffed” as a result, said Johnson, the current director of the program. 

And a recent report by Mississippi’s State Auditor Shad White alleged that from 2021 to 2024, the health department distributed hundreds of thousands of dollars in grant money the state received as a part of the federal initiative to curb HIV with little oversight, approving questionable purchases and continued payments even as the nonprofits performed few of the HIV tests they were tasked with administering. 

The agency could not produce monthly reports for the grant activities or documentation of hundreds of thousands of dollars of expenses, the report said.

Last fall, the HIV division found its footing again and hired new leadership, according to agency officials and community-based organizations that work with the department. With increased staffing capacity and a “recommitment” to HIV, the health department is again turning to the state’s plan and hopes to make updates to it in coming months. 

But just as the state’s response to HIV efforts was beginning to regain traction, the Trump administration took office, cutting or destabilizing federal grants the state depended on for prevention efforts.

Some community-based organizations in Mississippi have not been able to offer HIV testing since last year due to a federal grant transition that was first delayed by the health department and then by a breakdown in communication between the agency and the CDC, said Johnson. 

This lapse caused Open Arms’ Gulfport clinic, which depended on the grant to provide services to patients, to shut its doors in February. 

“We held on as long as we could,” said Gipson. 

Dozens of HIV-related federal research grants were abruptly axed in March by the Trump administration, including a $1 million grant to My Brother’s Keeper that studied health services that automatically link patients with HIV risk factors to PrEP. The University of Mississippi Medical Center, University of Southern Mississippi and the State Department of Health were all partners on the project. 

Cuts to COVID-19 pandemic relief funding for public health efforts have also impacted the state’s public health infrastructure and have ended free STI testing at county health departments. And the federal government froze millions of dollars in grants to the state’s Title X family planning recipient, which administers HIV prevention and testing services in Mississippi. 

But these cuts may just be the beginning. 

President Trump’s preliminary budget request for fiscal year 2026 suggests that federal HIV prevention efforts may be scaled back or eliminated. The CDC – which is the hub for domestic HIV prevention and distributes most of its prevention funding to state and local jurisdictions – would see its funding cut in half. 

If federal funding for HIV prevention is cut, it would be difficult for Mississippi’s health department, which is 66% federally funded, to make up the difference.

Advocates fear that if these cuts take effect, the progress Mississippi has made – slowly but surely – to get PrEP to more people, ensure that people are aware of their HIV status and lower new HIV infection rates, will be lost. 

“If that happens, or when that happens, it’s going to be a major setback to everything that we have been able to achieve,” said Mena. 

And Mississippians will bear the burden. Funding cuts for HIV prevention efforts in Mississippi will undoubtedly lead to a rise in HIV infections, Gipson said. 

“We’re turning back the hands of time.”

Mississippi Today used data from AIDSVu (aidsvu.org), a program of Emory University’s Rollins School of Public Health to report this story.