Trump Plan To Beat HIV Hits Rough Road In Rural America

One of the goals President Donald 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 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, said 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 state’s second-largest city.

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 said that ended up being a waste of money. “We had to let that position go, because nobody would go see her,” Salvaggio said. “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 said she doesn’t think it’s feasible in Oklahoma. The plan fails to recognize the particular ways different populations experience the epidemic, she said.

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 said.

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

Social Support Services Needed

Ky Humble’s hometown is Afton, Okla., which had a population of about 800 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 said. “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 as if his life was ending.

“I knew that that was a thing, [but] I was very ignorant,” he recalled. “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.”

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)

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 said. “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 said some people back in Afton know he has HIV, and some don’t.

“It’s like coming out as diabetic,” Humble said. “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 said he is cautiously optimistic that the Trump administration’s plan could mean more funding for HIV prevention in Oklahoma. But rural Oklahomans, Humble said, 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 said.

Oklahoma’s Uninsured Rate Is 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, said Andy Moore, clinic administrator of the Infectious Diseases Institute at the University of Oklahoma.

Salvaggio holds one of the medicines she prescribes to her patients with HIV.(Jackie Fortier/StateImpact Oklahoma)

“We’ve had teenagers write questions like ‘I’ve heard that if you douche with Mountain Dew after sex that it kills sperm,’” Moore said. 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 said.

Another issue in Oklahoma, Moore said, is that people aren’t getting diagnosed with HIV until they’re already sick because of AIDS, or close to that point.

“Which indicates that they didn’t get tested until they had been living with the disease for six, eight, 10 years,” Moore said. “We have one of the highest rates of late testing.”

Salvaggio said 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 haven’t expanded Medicaid under the Affordable Care Act. So, even if more people were tested for HIV, getting those who need it into treatment wouldn’t be easy, Salvaggio said.

Health care in Oklahoma is underfunded, she said, 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 said. “We don’t have a facility to see them in, and we don’t have [the] providers.”

This story is part of a partnership that includes StateImpact Oklahoma, NPR and Kaiser Health News.

Podcast: KHN’s ‘What The Health?’ A ‘Healthy’ State Of The Union

Health policy played a surprisingly robust role in President Donald Trump’s 2019 State of the Union address.

The president laid out an ambitious set of health goals in his speech Tuesday to Congress and the nation, including reining in drug prices, ending the transmission of HIV in the U.S. during the next decade and dedicating more resources to fighting childhood cancer.

Meanwhile, in Utah and Idaho, two of the states where voters last fall approved expansion of the Medicaid health program, Republican legislatures are trying to scale back those plans.

This week’s panelists for KHN’s “What the Health?” are Julie Rovner of Kaiser Health News, Anna Edney of Bloomberg News, Margot Sanger-Katz of The New York Times and Alice Ollstein of Politico.

Among the takeaways from this week’s podcast:

  • The Trump administration is proposing to change the drug rebates in Medicare so that consumers purchasing the medicines get more of the savings and the middlemen negotiating the deals get less. But that effort could lead to increased insurance premiums — a consequence that could have significant political repercussions.
  • Trump’s pledge to end HIV transmissions in 10 years was a bit of a surprise since the disease had not been much of a priority in earlier moves by the administration.
  • The efforts to restrict Medicaid expansion approved by voters in Utah and Idaho show the limitations of referendums and could impact a move to get a Medicaid expansion question on the Florida ballot.
  • An intriguing study this week showed that medications to treat cardiac problems saved Medicare money. The results were surprising because generally public health officials suggest that prevention is important to improve health but doesn’t necessarily save money.

Also this week, Rovner interviews KHN senior correspondent Phil Galewitz, who investigated and wrote the latest “Bill of the Month” feature for Kaiser Health News and NPR. It’s about a man with a minor problem — fainting after a flu shot — and a major bill. You can read the story here.

If you have a medical bill you would like NPR and KHN to investigate, you can submit it here.

Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read too:

Julie Rovner: NPR’s “Texans Can Appeal Surprise Medical Bills, But the Process Can Be Draining,” by Ashley Lopez

Margot Sanger-Katz: The Los Angeles Times’ “In Rush to Revamp Medicaid, Trump Officials Bend Rules That Protect Patients,” by Noam N. Levey

Anna Edney: Bloomberg News’ “Ketamine Could Be the Key to Reversing America’s Rising Suicide Rate,” by Cynthia Koons and Robert Langreth

Alice Ollstein: The Washington Post’s “’It Will Take Off Like a Wildfire’: The Unique Dangers of the Washington State Measles Outbreak,” by Lena H. Sun and Maureen O’Hagan

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunesStitcher or Google Play.

Trump Pledges To End HIV Transmission By 2030. Doable, But Daunting.

Noting that science has “brought a once-distant dream within reach,” President Donald Trump on Tuesday night pledged to eliminate HIV transmission within 10 years.

“We have made incredible strides, incredible,” Trump said in the annual State of the Union address. “Together, we will defeat AIDS in America and beyond.”

It’s a goal long sought by public health advocates. But even given the vital gains made in drug therapies and understanding of the disease over nearly 40 years, it is not an easy undertaking.

“The reason we have an AIDS epidemic is not just for a lack of the medication,” said Dr. Kenneth Mayer, medical research director at the Boston LGBT health center Fenway Institute. “There are a lot of social, structural, individual behavioral factors that may impact why people become infected, may impact if people who are infected engage in care and may impact or affect people who are at high risk of HIV.”

Health and Human Services Secretary Alex Azar, who provided details of the initiative after Trump’s announcement, said the administration will target viral hot spots by providing local groups more resources, using data to track the spread of the disease and creating local task forces to bolster prevention and treatment.

Neither Azar nor other federal officials who briefed reporters offered cost estimates for the program.

Azar said the plan seeks to reduce new infections by 75 percent in the next five years and 90 percent in the next decade.

That goal is predicated on growing use of current medications that suppress the virus to such low levels that it is not transmitted during sexual intercourse. PrEP, a drug combination available to individuals with a negative HIV status but may become infected, can reduce their risk of getting the virus by 97 percent, Azar said.”

“This is not the HIV epidemic of the 1990s,” said Terrance Moore, acting executive director of NASTAD, a nonprofit organization that represents officials who administer HIV and hepatitis programs. “We have the tools to end this epidemic.”

Gay and bisexual men made up two-thirds of the nearly 40,000 new HIV cases in 2017, but one clear signal of that difference in the epidemic today is the geography. The nation’s HIV hotbeds are no longer located just in coastal metropolitan areas. In 2017, more than half of the new cases were diagnosed in Southern states.

HHS said it will focus its efforts on the heart of the epidemic: 48 counties across 19 states; the District of Columbia; San Juan, Puerto Rico; and rural areas in seven states, many of which are in the South.

The new federal initiative would expand PrEP access in community health clinics for low-income patients and quickly refer any new clinic patients with HIV to specialized care.

Medications alone are not the answer. Lawmakers must have the political will to move forward with policies based in science, said Moore. Existing programs do not provide enough infrastructure to achieve this goal, he added.

“You can’t be simultaneously attacking and undermining the needs of these communities, while claiming that you want to support them and end the AIDS epidemic,” said Scott Schoettes, HIV project director for the LGBT advocacy group Lambda Legal.

The Trump administration has pursued policies that may hinder the president’s goal. And efforts in the South face additional challenges, like higher levels of poverty, difficulty providing health care in rural areas and historical racial tension.

“I don’t think that these things are things that we cannot overcome,” said Greg Millett, vice president and director of public policy at the HIV research foundation amfAR. “But I also think that we need to be very clear about what the obstacles are and to start thinking now innovatively about how we’re going to be able to obviate them.”

Here are some of the challenges that experts said the president’s plan could face.

Health Insurance

Insurance coverage plays a crucial role in keeping HIV patients healthy.

Comprehensive insurance helps patients access the expensive medications needed to keep the virus under control and vital tests to check on virus levels and white blood cell counts — key health indicators. HIV patients are also often susceptible to infections because the virus compromises the immune system. And they tend to have higher rates of mental health conditions, which could affect their ability to adhere to HIV medication if left untreated.

The Affordable Care Act opened up coverage for thousands of HIV patients with its guarantee of insurance for people with preexisting conditions, but many Republican officials are still calling for the law’s repeal.

In addition, the ACA’s Medicaid expansion led to a substantial jump in the number of people with AIDS who got that coverage, according to the Kaiser Family Foundation. But many states, especially in the South, have not expanded Medicaid. (Kaiser Health News is an editorially independent program of the foundation.)

A federal judge in Texas in December ruled the ACA unconstitutional in a lawsuit waged by a faction of conservative states and supported by the president.

“If you’re not going to provide it through the Affordable Care Act,” Schoettes said, “then there needs to be something that’s as comprehensive in terms of getting people care.


Although the federal government provides some housing assistance for people with HIV, it does not fill the need.

Those who are homeless or have unstable housing have lower access to HIV medications and poorer treatment outcomes.

A study from the Centers for Disease Control and Prevention found that among individuals living with HIV in certain impoverished urban areas across the country, the lower the household income, the higher the rate of HIV in the area. 

The federal government provides assistance through a program called Housing Opportunities for Persons With AIDS, known as HOPWA. In 2016, HOPWA changed its  funding formula to better allocate its resources to Southern areas hardest hit by HIV.

However, some of these HOPWA programs have waiting lists that can extend years. The nation is also experiencing an affordable housing shortage, which further limits options for low-income individuals living with HIV and their families.

Stigma And Mistrust

Experts continue to cite stigma as a key obstacle for treatment. Twenty-six states have laws that penalize an HIV patient for exposing someone to the virus, including 19 that require people who are aware they are infected to notify sexual partners and 12 that mandate disclosure to needle-sharing partners, according to the CDC.

The problems extend to doctors and medical staff. One study, published in 2016, found widespread stigma against HIV patients among health care staff in Alabama and Mississippi, especially among whites and men.

Gina Brown, a community engagement manager for the Southern AIDS Coalition, in part blames the culture of the South, where religious beliefs often clash with gay culture, for perpetuating these problems. “We are still in Bible Belt country, where religion plays a huge part in how we talk about sex or not talk about sex,” she said.

But federal policies, such as the Trump administration’s ban on transgender men and women serving in the military, also play a role.

Federal officials acknowledged these difficulties and affirmed the program would not discriminate against transgender patients.

In addition, minority communities hard hit by the HIV epidemic harbor lingering distrust toward the medical system due to historical abuses such as the Tuskegee syphilis trials, said Mayer.

Injection Drug Use

The scourge of addiction has killed tens of thousands across the nation, spread hepatitis C and is now leading to spikes in HIV transmission, as drug users share needles. In 2015, Scott County, Ind., sought to combat an HIV outbreak fueled by injected opioid use that infected 215 people. Drug use has also been connected to multiple HIV clusters in Massachusetts and Kentucky.

HHS reported that injection drug users accounted for 1 in 10 new HIV cases in 2016.

Expanding syringe exchange programs across the country could minimize this problem, experts said.

“Unfortunately, in the United States we haven’t done as good a job as other Western countries in making sure that those programs are widely available for those Americans who need them,” said Millett.

The CDC and HHS consider syringe exchange programs effective interventions, but some cities, such as Charleston, W.Va., that implemented the programs have now shut them down because of neighborhood complaints, funding concerns and opposition from citizens who object to providing injection equipment.

Federal funds can be used to support this intervention, but these dollars cannot go directly toward purchasing needles.