One of the goals President Trump announced in his State of the Union address was to stop the spread of HIV in the U.S. within 10 years.

In addition to sending extra money to 48 mainly urban counties, Washington, D.C., and San Juan, Puerto Rico, Trump’s plan targets seven states where rural transmission of HIV is especially high.

Health officials and doctors treating patients with HIV in those states say any extra funding would be welcome. But they say that strategies that work in progressive cities like Seattle won’t necessarily work in rural areas of Alabama, Arkansas, Kentucky, Mississippi, Missouri, Oklahoma and South Carolina.

Stigma around HIV and AIDS and around being gay runs deep in parts of Oklahoma, says Dr. Michelle Salvaggio, medical director of the Infectious Diseases Institute at the University of Oklahoma Health Sciences Center in Oklahoma City. The institute is one of two federally funded HIV clinics in Oklahoma; the other is in Tulsa, the second-largest city in the state.

A long drive for anonymity

Salvaggio’s clinic has six exam rooms where she sees patients, many of whom drive hours for treatment. The clinic used to employ a case manager in rural Woodward County, a little more than two hours’ drive northwest of Oklahoma City.

But Salvaggio says that having a case manager there ended up being a waste of money. “We had to let that position go, because nobody would go see her,” Salvaggio says. “Because they didn’t want to be seen walking into the HIV case manager’s office in that tiny town — that can only mean one thing.”

In Oklahoma, as in much of the U.S., black gay and bisexual men have the highest risk of HIV infection. Other groups with elevated risk in Oklahoma include Latinos, heterosexual women and Native Americans.

Salvaggio applauds the goal of ending HIV transmissions within 10 years, but says she doesn’t think it’s feasible in Oklahoma. The plan fails to recognize the particular ways different populations experience the epidemic, she says.

Native Americans in Oklahoma, for example, can’t count on the anonymity of a large health clinic.

“When they go into an Indian Health Service clinic, it is possible that they will see their cousin behind the desk, and their cousin’s brother-in-law working in medical records, and their niece’s boyfriend working in the pharmacy,” Salvaggio says.

Even if Native Americans have access to HIV care at the clinic, she says, “they are literally in fear of being outed.”

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Ky Humble, who now lives in Oklahoma City, says there needs to be more support for people who are HIV-positive.

Jackie Fortier/StateImpact Oklahoma

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Jackie Fortier/StateImpact Oklahoma

Social support services needed

Ky Humble’s hometown is Afton, Okla., which had a population of about 800 people when he was growing up. He belongs to the Cherokee Nation, and was raised a Southern Baptist. He doesn’t remember learning about HIV at all when he was in school.

“Even if I did, it clearly wasn’t enough,” Humble says. “I knew I was gay in middle school; I think I would have paid attention.”

When he was diagnosed with HIV six years ago, at age 21, Humble felt like his life was ending.

“I knew that that was a thing, [but] I was very ignorant,” he recalls. “I was two weeks away from graduating from college — you’re supposed to be on top of the world. I thought it was a death sentence.”

He called his mom right away. She immediately drove across the state to be with him.

“We just sat there and cried for six hours straight,” Humble says. “And then we actually went [out] and bought several books on HIV, and just started reading them — to try to figure out what was going on.”

Today, Humble is healthy. His HIV levels are undetectable and he gets regular medical treatment to keep it that way. He now lives in Oklahoma City, but his family still lives in his hometown. He says some people back in Afton know he has HIV, and some don’t.

“It’s like coming out as diabetic,” Humble says. “I don’t necessarily tell people that I’m HIV-positive. It’s just part of who I am; it doesn’t define me.”

He says he is cautiously optimistic that the Trump administration’s plan could mean more funding for HIV prevention in Oklahoma. But rural Oklahomans, Humble says, also need access to “wraparound services” — such as food pantries, mental health therapy and transportation assistance — to help them deal with the disease.

“I have friends who have HIV and live in rural areas, and just getting to appointments is challenging,” he says.

Oklahoma’s uninsured rate is the second-highest in U.S.

Exactly how much money the president’s HIV plan will get is up to Congress. But even inexpensive, proven methods for fighting HIV — like distributing condoms — can be a tough sell in a state that doesn’t mandate comprehensive sex education.

Informational HIV talks with teenagers often turn into a basic health class for dispelling myths, says Andy Moore, clinic administrator of the Infectious Diseases Institute at the University of Oklahoma.

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Dr. Michelle Salvaggio holds one of the medicines she prescribes to her patients with HIV.

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“We’ve had teenagers write questions like, ‘I’ve heard that if you douche with Mountain Dew after sex that it kills sperm,’ ” Moore says. They earnestly want to know if that’s true. “We have to back way up, and explain what sex is, how babies are made, different types of sex — before we can teach them about HIV prevention,” he says.

Salvaggio says thousands of people across Oklahoma would need to be tested for HIV to reach the administration’s goal. And Oklahoma has the second-highest uninsured rate in the nation after Texas — meaning many people don’t have a primary care doctor, let alone prescription drug coverage for drugs like Truvada, which can be used to prevent HIV infection.

It’s also one of 14 states that hasn’t expanded Medicaid under the Affordable Care Act. So, even if more people were HIV-tested, getting those that need it into treatment wouldn’t be easy, Salvaggio says.

Health care in Oklahoma is underfunded, she says, and couldn’t cope with a sudden influx of new patients. “I don’t know what we’d do with all those new patients,” she says. “We don’t have a facility to see them in, and we don’t have [the] providers.”

This story is part of NPR’s reporting partnership with StateImpact Oklahoma and Kaiser Health News. You can follow Jackie Fortier on Twitter: @JackieFortier.

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Grisel Sustache Flores takes a seat at a health clinic in Springdale, Ark., for low-income patients. The 46-year old Puerto Rico native says she learned last fall that she qualified for Medicaid, which Arkansas expanded under the Affordable Care Act to cover more adults. It would cost her only $13 a month, so Flores, who suffers from multiple sclerosis, eagerly signed up.

“My doctors in Puerto Rico say my condition is very difficult,” Flores says through an interpreter at the Community Clinic facility. “Every day, it gets harder and harder.”

She holds out both hands. “Today my fingers are swollen and numb,” she says. “Some days it’s hard to stand for long periods.”

But in Arkansas, as in a handful of other states, Medicaid coverage now comes with some strings attached for certain beneficiaries. The Trump administration has allowed states to impose what’s known as a work requirement. In Arkansas, that means Flores has to work, volunteer or attend school at least 80 hours a month and periodically file progress reports to prove she’s doing so.

“Recently they have taken me out of enrollment because I was not reporting my hours of work,” she says.

Flores says losing her Medicaid health coverage was devastating because she needs medicines and physical therapy to control her disease. “I cried. I cried a lot,” she says.

Community Clinic serves 37,000 low-income patients in the northwest part of the state. Irvin Martinez, its health insurance enrollment specialist, says he’s witnessed a lot of turmoil among patients attempting to comply with the new Medicaid rules. In Arkansas, the program is called Arkansas Works.

Using his keyboard, Martinez opens the Arkansas Works web portal and clicks on some arrow icons. “I’ve actually seen, when I’ve logged into the website with them, that they are being locked out of their accounts if they enter the wrong data,” he says.

Patients who are locked out are instructed to call a hotline to help them complete their paperwork.

“But that has problems, too,” Martinez says. “I had one patient call and he was given the number to a prison, then to a private home. It took him three calls to the call center to get access to his account.”

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Community Clinic serves 37,000 low-income patients in northwest Arkansas at 13 locations, such as this one in Springdale. A Community Clinic insurance enrollment specialist says he’s seen firsthand the difficulties people have had trying to comply with the state’s new Medicaid work rule.

Courtesy of Lea Ann Thomas/Community Clinic

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Courtesy of Lea Ann Thomas/Community Clinic

In August 2018, a month after the work reporting requirement took effect, the state Department of Human Services said there were 265,223 total enrollees in Arkansas Works, with more than 62,000 of them subject to the new rule. By December, more than 18,000 had been disenrolled from their Medicaid insurance because they didn’t meet the requirement.

In response, DHS says it has beefed up its call center and is doing outreach to locate beneficiaries who might have lost insurance — by phone, email and home visits. The department has also launched an awareness campaign with paid advertising on public transit systems across the state and in college newspapers reminding people they need to comply with the work rule.

The department does offer a “good cause exemption” for beneficiaries dealing with unexpected circumstances that make it hard to meet the work requirement. But Martinez says Arkansas Works private insurance carriers and local nonprofits have had to step up to help confused patients navigate enrollment and reporting.

“Before the Affordable Care Act, nearly half of our patients were uninsured,” says Kathy Grisham, CEO of Community Clinic. “Many resorted to local emergency rooms for free health care.”

More people got insured when Arkansas expanded Medicaid. But Grisham says this new work requirement poses a serious burden on patients — and the providers who serve them.

“People do freak out when they find they are cut off,” she says. “So we shift them to our uninsured population because we are obligated to take care of them.”

Robin Rudowitz, associate director for the Kaiser Family Foundation Program on Medicaid and the Uninsured, says a few other states have also been approved by the Trump administration to test expanded Medicaid work rules, but those experiments cost money.

“We know Kentucky had done some original estimates that were in the range of $375 million to implement their waiver over two years,” she says.

Arkansas has spent $7.5 million on startup costs, according to the Department of Human Services.

But Gov. Asa Hutchinson, who initiated Arkansas Works, says the program is a success. “We’ve already had more than 7,000 Arkansas Works participants who have moved into work,” he says.

People disenrolled from Arkansas Works failed to comply, according to the governor, who says the work rule instills responsibility among certain Medicaid recipients who need a push.

“We are simply saying if you are able-bodied and able to work, and you don’t have dependent children at home,” he says, “you ought to either be working or you ought to be in school or you ought to be volunteering or contributing.”

Hutchinson says Medicaid case closures are often the result of churn — people moving away, earning too much money to qualify or securing health insurance elsewhere.

“There’s not an increase in uncompensated care,” he says. “There is not a huge flock of those coming back and re-enrolling this year, so I think we are seeing that the system is removing people who have been ineligible for the service.”

But KFF’s Rudowitz held anonymous enrollee focus groups and says enrollees reported steep learning curves in following the rules.

“The rules are complicated and involve multiple steps to comply, and many who were trying to comply faced some problems such as creating these online accounts or navigating the monthly reporting. They had problems with passcodes or couldn’t get assistance or had difficulty accessing the Internet, couldn’t find a computer, or were uncomfortable using a computer.”

In Springdale, Flores was able to re-enroll in Medicaid with the help of Martinez at Community Clinic. She pulls out her new insurance paperwork from her briefcase.

“My new documents have arrived,” she says, “and I am learning how it works.”

But Flores says she is now seeking counseling to help her cope with the stress of complying with her new health insurance.

Legal Aid of Arkansas, acting on behalf of nine Arkansas Works patients, has filed a lawsuit against the federal government over the regulations. The suit argues that the requirements are too cumbersome and cause harm to recipients.

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