California Gov. Gavin Newsom and state legislators in Sacramento seem to agree: Prescription drug prices are too high. But lawmakers and the second-term governor are at odds over what to do about it, and a recent proposal could trigger one of the biggest healthcare battles in Sacramento this year.
A California bill awaiting its first hearing would subject drug industry intermediaries known as pharmacy benefit managers, or PBMs, to licensing by the state Department of Insurance. And it would require them to pass along 100% of the rebates they get from drug companies to the health plans and insurers that hire them to oversee prescription drug benefits.
But the proposal, which would impose some of the toughest PBM regulations in the nation, faces at least one major hurdle: Newsom. He vetoed a similar measure last year, unconvinced it would lower consumer costs. He signaled his intent to offer an alternative but has yet to reveal it.
Any fight over PBM reform promises to be a pricey one. Interest groups on both sides spent at least $7 million combined lobbying California lawmakers and the Newsom administration on healthcare last year, according to records filed with the secretary of state.
"This bill directly threatens the profitability of PBMs going forward," said Ge Bai, a health policy professor at Johns Hopkins University who has tracked similar bills in other states. "These bills are really the result of an interindustry dog fight, and these are ridiculously fierce fights because PBMs control revenue for pharmacies, as well as for manufacturers."
The country's top three PBMs —CVS Caremark, affiliated with Aetna; UnitedHealth Group's Optum Rx; and Express Scripts, owned by Cigna — control roughly 80% of prescriptions in the United States, according to the Federal Trade Commission. In theory, they leverage their buying power to extract steep discounts from drug manufacturers and pass savings along to insurance companies and employers who provide health coverage.
But as prescription drug prices continue to spiral and federal efforts to control them stall, state lawmakers are focusing on PBMs, which help insurers decide which drugs their plans cover and how much patients will pay out-of-pocket to get them. However, they have been stymied by the drug industry's secretive ecosystem of rebates, reimbursements, and obscure fees, thwarting efforts to lower drug costs.
In addition to California, PBM proposals have been introduced this legislative session in Arkansas, Iowa, and at least 20 other states as of Feb. 10, according to the National Academy for State Health Policy. All 50 states and Washington, D.C., have some sort of PBM regulation on the books.
And although President Donald Trump has criticized PBMs and vowed to "knock out the middleman," his recent actions undoing moves to lower prescription drug prices have left some healthcare experts skeptical that meaningful reform will come from Washington, D.C.
Meanwhile, state data shows California health plan drug costs have grown by more than 50% since 2017. California insurers spent 11% more on pharmaceuticals in 2023 than in 2022, with specialty and brand-name drugs driving the increase.
Both Newsom and bill author Sen. Scott Wiener (D-San Francisco) have said PBMs play a role in high drug prices. While Wiener wants to ban some of their practices outright, Newsom has so far taken a more measured approach, calling for more disclosure and pointing to his plan for the state to manufacture its own generic drugs, which has yet to get off the ground.
In vetoing Wiener's 2024 bill, which passed in a near-unanimous bipartisan vote, Newsom said he was unconvinced that licensing PBMs would improve affordability for patients and instead directed his administration to "propose a legislative approach" to gather more data from PBMs. In a statement, Newsom spokesperson Elana Ross noted that "Big Pharma backed the vetoed bill" and said the Democratic governor, in partnership with the legislature, will take action to address PBMs this year. She declined to elaborate.
In his January budget proposal, Newsom said his administration was "exploring approaches to increase transparency" in the entire drug supply chain, not just PBMs.
Industry representatives say they're being unfairly targeted with transparency laws and regulations and blame pharmaceutical companies for setting high drug prices.
"The PBM is taking the risk on price variation, and it allows the client to have certainty on what they're going to be paying," said Bill Head, an assistant vice president of state affairs for the Pharmaceutical Care Management Association, which represents PBMs. "We're hired because it works. It saves money at the end of the day."
He said PBMs pass on more than 95% of the rebates they receive from drugmakers — a number health policy researchers say is hard to verify.
Consumer advocates say drugmakers simply raise their prices to maintain profits and PBMs charge insurers far more for many medicines than pharmacies are paid to actually dispense them, a practice known as spread pricing.
A January report by the Federal Trade Commission found the three biggest PBMs appeared to steer the most profitable prescriptions away from competitors and to their affiliated pharmacies, which they reimbursed at markups exceeding 1,000% for some drugs, including some used to treat cancer, multiple sclerosis, and serious lung conditions. Over a six-year period, the analysis found, those PBMs and their affiliated pharmacies made roughly $8.7 billion in additional revenue by marking up prices on a sample of 51 specialty drugs.
Wiener's latest bill, SB 41, would ban such markups, as well as spread pricing, and bar PBMs from receiving performance bonuses based on drug rebates. Similar provisions were stripped out of last year's bill in the final days before its passage.
"These are practices that only PBMs are engaging in and they're causing harm, reducing consumer choice, increasing drug costs, and it's time to address them," Wiener said. "I'm not going to let that idea just evaporate because of one veto."
Clint Hopkins, who has co-owned Pucci's Pharmacy in Sacramento since 2016, said he often deals with complaints from frustrated patients who don't understand drug pricing schemes and restrictions set by pharmacy benefit managers.
He's had to turn away customers whose drugs can cost him hundreds of dollars in losses each time they're filled and says spread pricing is helping drive independent pharmacies out of business.
"I'm not asking to be paid more. I am asking to be paid fairly — at cost or above."
Under current law, California requires PBMs to disclose some information about drug rebates, and other information, to its clients. That data is often labeled as proprietary to the companies, leaving an incomplete picture of the supply chain, said Maureen Hensley-Quinn, a senior program director at the National Academy for State Health Policy.
PBM representatives say pharmacies, insurers, and other actors in the supply chain should have to disclose information about their profits and practices, too.
"You want to look under the hood?" Head said. "We're open to that, but let's look under everybody's hood."
Bai said lawmakers are likely going after PBMs because insurers are one portion of the supply chain that they have the power to regulate. But she warned such legislation could cost consumers more if drugmakers and pharmacies remain unchecked. A better approach, Bai suggested, would be to bar PBMs entirely from managing benefits for generic drugs, one of their biggest revenue sources.
"In healthcare, there's no saint and there's no villain. Everybody's trying to make money," Bai said. "These fights will bring no benefit to patients unless we go to the root."
HELENA, Mont. — When Lou and Lindsay Volpe's son was diagnosed with a chronic bowel disease at age 11, their health insurer required constant preapproval of drugs and treatments — a process the Volpes say often delayed critical care for their son.
"You subscribe to your insurance policy, you pay into that for years and years and years with the hope that, if you need this service, it will be there for you," Lou Volpe said. "And finally, when you knock on the door and say, ‘Hey guys, we need some help,' they just start backpedaling."
The Volpes, who live in Helena, and their health care providers spent more than 18 months pushing for these approvals from Blue Cross and Blue Shield of Montana — including a four-month wait last year for approval of costly infusions that worked to control their son's disease where other treatments had failed.
"It just really slowed everything down on his treatment, and I feel like he could have been recovering from this situation a lot sooner," Lindsay Volpe said.
Now, the Volpes, other patients, and their health care providers are bringing the issue to the 2025 Montana Legislature, saying it's time Montana joined many other states in limiting how and when insurers can deny drugs or treatments through their preapproval process, known as "prior authorization."
This month, a Democratic and a Republican lawmaker introduced or were drafting separate bills restricting health insurers' ability to require prior authorization for certain treatments and medications. A third lawmaker was preparing other measures as well.
Many of the state's medical providers are behind the effort, saying prior authorization is denying vital care and needlessly sucking up more and more of their time, which they say could be better spent with patients.
"It has increased incredibly in the last couple of decades, to the point that it's one of the leading causes of burnout for physicians," said Lauren Wilson, a Missoula pediatrician and past president of the Montana chapter of the American Academy of Pediatrics. "It's just delaying patient care for no good reason."
Montana health insurers, however, insist they are authorizing drugs and treatments that are shown to be needed. If their review power is stripped away, costs will continue to increase due to insurance paying for unnecessary treatments, they said.
Blue Cross and Blue Shield of Montana said it doesn't comment on individual cases, such as the Volpes', but said it approves the "vast majority" of prior authorization requests. Blue Cross, which insures or manages health insurance for 384,000 people in Montana, also said it regularly audits its prior authorization procedures and is taking steps to speed up the process.
"Prior authorizations are a way to ensure members receive the right care at the right place at the right time, avoiding unnecessary services and helping providers understand coverage before a service is delivered," the company said in a statement.
Denial of care through insurers' prior authorization processes has struck a nerve nationwide as well.
In the wake of the December shooting death of UnitedHealthcare CEO Brian Thompson in New York City, customers of the health insurance giant and other consumers took to social media to denounce the industry for denied claims and puny reimbursements.
And since then, one of the nation's largest health insurers, The Cigna Group, announced it would spend $150 million this year to reform its prior authorization process and related services for patients and health care providers.
In the past two years, multiple states have passed laws restricting prior authorization, according to the American Medical Association, with New Jersey enacting restrictions over New Year's. The laws, spearheaded by health care providers, generally narrow when and how prior authorization can occur and create stricter timelines for the review.
Legislators in several states, including Indiana, Nebraska, North Dakota, Virginia, and Washington, have introduced prior authorization bills this year.
In Montana, local health insurers aren't quietly giving in to increased regulation.
They note that state regulation of prior authorization affects only about a fourth of Montanans with health insurance, because large, self-insured plans managed by national health insurers are under federal rules.
State restrictions on prior authorization will increase costs primarily for three in-state insurers, they say — and, eventually, their customers.
"We feel like our job is to say, ‘Is that the best use of money for our membership?'" Jackie Boyle, senior vice president of external affairs for Mountain Health Co-Op, said of prior authorization. "If we approve something, we are doing it for every patient like them."
Mountain Health, based in Helena, insures 55,000 people in Montana, Idaho, and Wyoming.
Democratic state Rep. Jonathan Karlen of Missoula is sponsoring two bills: one to remove prior authorization for most generic drugs, inhalers, and insulin, and another that says patients can't be denied a drug when they switch insurers and are waiting for authorization from the new insurer. The second bill also says a procedure or treatment may be denied only by a physician with a matching specialty.
Karlen said insurers are putting up barriers to care to increase their profits and said it's time to break those barriers down.
"People should be making medical decisions based on what they and their doctors think, not what their insurance company thinks," he said. "If a doctor says you need a medication, that's why you have insurance — so you can get that."
Republican state Rep. Ed Buttrey of Great Falls said he plans to introduce a bill to help kids with chronic bowel diseases, such as the Volpes' son, imposing a seven-day limit to decide whether to authorize expensive biologic treatments. If insurers don't meet the deadline, the drug would be automatically approved.
Buttrey's bill also would eliminate most retroactive denials — when insurers refuse to pay for treatment they'd authorized.
State Sen. Vince Ricci (R-Billings) said he is preparing other bills that may include even stronger language to restrict prior authorization for drugs for various conditions.
Health care providers and patients have heard the rationale of insurers and promises that improvements will be made, but they say nothing has happened and that it's time for the state to step in.
"When there are no consequences and no teeth to anything, I can complain all I want, but it doesn't seem to incite change," said Kim Longcake, the pediatric nurse practitioner who's treating the Volpes' son.
Longcake said she and another specialist in her office tracked the time they spent on prior authorization requests in a two-week period.
"Depending on where you want to see me, I'm booking out four to six months," Longcake said. "If I wasn't spending 12 hours a week doing prior authorization stuff, it would improve access to care."
The Volpes said their son, now 13, couldn't absorb food and didn't gain any weight for a year and a half while he went through treatments that didn't work and repeated preauthorization waits, including for his current treatment, which appears to be working.
"What he's gone through at that age was really excessive, beyond what was needed for treatment, because we couldn't get the care that he needed," his mother said. "If we didn't get switched to this medication, he'd still be doing that."
HAVANA, Fla. — For a rural community, this town of 1,750 people has been more fortunate than most. A family doctor has practiced here for the last 30 years.
But that ended in December when Mark Newberry retired. To attract a new doctor, Havana leaders took out want ads in local newspapers, posted notices on social media, and sweetened the pot with a rent-free medical office equipped with an X-ray, an ultrasound machine, and a bone density scanner — all owned by the town.
Local leaders hope the recruitment campaign will help attract candidates amid a nationwide shortage of doctors.
"This is important for our community," said Kendrah Wilkerson, Havana's town manager, "in the same way that parks are important and good future planning is important."
According to a Florida Department of Health report, doctor shortages affect all or part of nearly every county, but less populous counties, such as Gadsden, where Havana is located, have the fewest physicians per 10,000 residents.
Florida's doctor shortage is expected to grow in the next decade, with one study projecting a statewide need of 18,000 physicians — including 6,000 primary care doctors — by 2035.
"This is a huge, huge issue," said Matthew Smeltzer, a managing partner of Capstone Recruiting Advisors, a company that helps hospitals, physician practices, and other employers find and hire doctors. "It probably hits small towns the hardest, just because most people would prefer to live in a midsize or large community.
In this challenging environment, Havana leaders are hoping that want ads and rent-free perks will make their small town stand out and persuade a doctor to practice here.
Wilkerson describes the community, just south of the Georgia border, as an ideal place to raise a family. Its country roads are lined with farms, pastures, and churches. Main Street downtown features antique stores, gift shops, a general store, and restaurants.
"Everything you would imagine a Hallmark movie to be is kind of where we live," Wilkerson said. "It's people who still care and look out for each other, and neighbors are actually friends."
Offering generous incentives was how town leaders got Newberry to practice in Havana in 1993. The town gave Newberry an initial deal similar to the one it's offering now, and later began providing him about $15,000 a year in financial support.
Newberry, who served about 2,000 patients, declined to be interviewed. "I'm just retiring!" he said in an email, adding that "the town has chosen unconventional ways" of recruiting a doctor.
By subsidizing office space and the use of medical equipment to attract a doctor, Havana is looking out for the needs of its residents, Wilkerson said.
Without a town doctor, some of Newberry's former patients now have to travel to Tallahassee, about a 30-minute drive southeast of Havana. Others are seeing doctors in Quincy, about a 20-minute drive west.
"Our hope is that they'll come back when we find us a new doctor," Havana Mayor Eddie Bass said.
Susan Freiden, a former town manager who retired in 2006, said having a local doctor is also important to meet the needs of the town's low-income residents, many of whom are older adults. "Not everybody can get to Tallahassee to get a doctor," she said. "Not everybody has transportation."
But it remains to be seen whether rent-free office space and equipment are enough to attract a doctor to Havana. The town's recruitment campaign has drawn a lot of interest from nurse practitioners, but few primary care physicians have applied for the position.
Town leaders say they're holding out hope of finding a family physician, who can practice and prescribe medications independently.
"We would really, you know, prefer to have a true doctor that can handle it all for us," Bass said.
Smeltzer, the physician headhunter, said primary care physicians are in especially low supply. And though in his experience Florida, North Carolina, Tennessee, and Texas are among the places doctors want to live and work, it often takes something extra to persuade them to work in a small town, he said.
"If someone wants to practice in a small town, they're more likely to go to where they have ties, whether it's themselves or their spouse or significant other," he said.
The challenge for a community of Havana's size, Smeltzer said, is that "there may literally be nobody from that town that went to med school. Or, if there is, maybe it's one. But were they a primary care physician?"
Still, there is a silver lining. Smeltzer said young physicians are placing a high value on work-life balance and meaningful relationships with their patients — qualities that may give an edge to a small-town, independent practice.
"We hear quality of life and work-life balance far more in the last three to five years than we ever heard before," he said, "and that's almost in lockstep with compensation in terms of what they're focusing on."
Freiden, the former Havana town manager, said those are the same values Newberry had when he started to practice here. She even became one of his patients.
"He was just perfect," she said, "because he wasn't all about the money, if you can imagine that. He was kind of a different kind of physician."
Fortunately for Havana, the town recently received interest from a family medicine doctor who grew up here, went to medical school, and expects to finish a three-year residency at Tallahassee Memorial HealthCare in June.
Camron Browning, a 2003 graduate of Northside Havana High School, told the seven-member Town Council in a December interview that he was focusing on family medicine and that, during his residency, he has seen thousands of patients, delivered babies, and gained experience as a hospitalist.
"My goal," he said, "was to be able to come home and serve my hometown."
Smeltzer said Havana's incentives could be attractive to new doctors, such as Browning, who would face daunting startup costs to establish an independent practice.
After the December interview, the Council voted unanimously to begin contract negotiations with Browning, who said he would plan to be ready to see patients as soon as possible after completing his residency.
"I'm here to stay," Browning told the Council. "This was always my dream."
For more than a decade, Kaiser Permanente has been under the microscope for shortcomings in mental health care, even as it is held in high esteem on the medical side.
In 2013, California regulators fined the insurer $4 million for failing to reduce wait times, giving patients inaccurate information, and improperly tracking appointment data. And in 2023, KP agreed to pay $50 million, the largest penalty ever levied by the state's Department of Managed Health Care, for failing to provide timely care, maintain a sufficient number of mental health providers, and oversee its providers effectively.
Now, Kaiser Permanente is back in the hot seat as mental health workers in Southern California wage a strike that's in its fourth month. KP therapists and union representatives accuse the HMO giant of saddling workers with excessive caseloads and often forcing patients to wait twice as long as the state allows for follow-up appointments. They say that the staff is burned out and that this work environment makes it hard to recruit clinicians, exacerbating the staffing problem.
KP rebuffs these claims, saying the union is parading out old problems, seeking to create "an inaccurate and outdated perception" of KP's care. They say the union's pay demands are "in direct contrast to our commitment to providing quality, affordable care."
Kaiser Permanente — the largest commercial health plan in California, with about 9 million members — is far from alone in struggling to provide adequate mental health care. A pandemic-induced shortage of health care workers has created obstacles for all health plans in recent years, on top of a preexisting scarcity. Moreover, many therapists decline to contract with insurers. And lingering bias in the health care system against mental health services — and patients — may also be at play.
Federal and state laws require health plans to provide mental health care on par with medical care. But many people who have sought therapy can vouch that those measures, known as mental health parity laws, do not seem to be followed consistently. You can spend hours or even days calling every therapist allegedly in your insurance company's network and come away empty-handed.
Secret-shopper surveys of 4,300 randomly selected outpatient providers listed as accepting new patients showed that "an alarming proportion" of them were unresponsive or unreachable, according to a federal government report issued last month. And while that was true for medical providers, it was consistently worse for mental health and substance abuse care, according to the report.
In California, state regulators have been conducting behavioral health care investigations of the insurance companies they regulate to help identify the extent and causes of delays in care.
So far, the DMHC has investigated nine health plans (not including KP) and found dozens of violations related to appointment availability, timely access, quality of care, and patient appeals, department spokesperson Rachel Arrezola says. The agency also has identified numerous "barriers" that do not necessarily break the law but may make it more difficult for patients to get care, she says.
Mark Peterson, a professor at UCLA's Luskin School of Public Affairs, notes that the open-ended nature of therapy can conflict with health plans' focus on their bottom lines. "It may be once a week, it may be more than once a week and go on for years," Peterson says.
For insurers, he says, the question is, "How do you put an appropriate limit on that?"
And the unwillingness of many therapists to accept insurance companies' payment rates, or to abide by their restrictions, often leads them to decline participation in health plan networks and charge higher rates. That, Peterson says, makes therapy financially inaccessible for a lot of people seeking it.
Even if you have some coverage for therapy outside your health plan network, your insurer will pay only a percentage of the rate that it recognizes as legitimate. "If your therapist is charging $300 an hour, and your insurance company only recognizes $150 an hour, and they only pay 50% of what they recognize, now you've got a quarter coverage of your therapy," Peterson says.
Since Kaiser Permanente is a closed system and patients don't get reimbursed for care outside the network, access problems for its patients can be "highly pronounced," Peterson adds.
In California, KP has accounted for over $54 million of the $55.7 million in mental-health-related fines the DMHC has levied on insurers in the past two decades. That includes the $50 million fine imposed in 2023, which was part of a settlement in which KP agreed to fix deficiencies the department found and to invest an additional $150 million in projects intended to enhance access to mental health care, not just for KP members, around California.
Officials at the National Union of Healthcare Workers, which represents some 2,400 KP mental health workers in the ongoing Southern California contract talks, say the HMO could easily invest enough to become a paragon of high-quality mental health care if it wanted to.
Greg Tegenkamp, the lead union negotiator, says KP could "lead the way to do the right thing."
Kaiser Permanente says it already is doing the right thing, even as it acknowledges past shortcomings. In a recent statement, it said it has invested over $1 billion in new treatment spaces and more mental health providers since 2020.
"We've grown our workforce and increased our network of skilled therapists so that any Kaiser Permanente member who needs an appointment is able to get timely, high-quality, clinically appropriate care," the company says.
In addition to higher wages and lower patient loads, workers want more time to complete follow-up tasks outside sessions and the reinstatement of a pension that was eliminated for those hired in Southern California after 2014.
Kaiser Permanente says that it already pays its mental health workers in Southern California about 18% above the market rate and that the current proposal would raise pay even more. KP recently raised its proposed wage increase by a modest amount, according to union officials.
KP refutes reports from workers about long wait times for patients seeking mental health appointments. It says the average wait time is 48 hours for urgent appointments and six business days for nonurgent ones, "which is better than the state's requirement" of no more than 10 days.
But workers say KP patients still face long delays for follow-up appointments.
"It's really hard for our patients to get regular, frequent appointments," says Kassaundra Gutierrez-Thompson, a KP therapist in Southern California who is on strike. Gutierrez-Thompson says she's seen it from both sides, since she is also a patient who sees a KP psychiatrist for depression and recently faced a big rescheduling delay after one of her appointments was canceled without notice.
As a provider, Gutierrez-Thompson says, she and her colleagues are expected to see patients "back-to-back-to-back." She says some of her colleagues developed urinary tract infections when they couldn't get to the bathroom. One even started wearing adult diapers, she says.
"The working conditions are like a factory," Gutierrez-Thompson says. "We do such human work, but they would love for us to be robots with no needs and just see patients all day."
Valentino Valdez was given his birth certificate, his Social Security card, a T-shirt, and khaki pants when he was released from a Texas prison in 2019 at age 21. But he didn't have health insurance, mental health medications, or access to a doctor, he said.
Three years later, he landed in an inpatient hospital after expressing suicidal thoughts.
After more than a decade cycling through juvenile detention, foster care placements, and state prisons, Valdez realizes now that treatment for his mental health conditions would have made life on his own much easier.
"It's not until you're put in, like, everyday situations and you respond adversely and maladaptive," he said, "you kind of realize that what you went through had an effect on you."
"I was struggling with a lot of mental stuff," said Valdez, now 27.
For years, people like Valdez have often been left to fend for themselves when seeking health care services after their release from jail, prison, or other carceral facilities. Despite this population's high rate of mental health problems and substance use disorders, they often return to their communities with no coverage, which increases their chances of dying or suffering a lapse that sends them back behind bars.
A new federal law aims to better connect incarcerated children and young adults who are eligible for Medicaid or the Children's Health Insurance Program to services before their release. The goal is to help prevent them from developing a health crisis or reoffending as they work to reestablish themselves.
"This could change the trajectory of their lives," said Alycia Castillo, associate director of policy for the Texas Civil Rights Project. Without that treatment, she said, many young people leaving custody struggle to reintegrate into schools or jobs, become dysregulated, and end up cycling in and out of detention facilities.
Medicaid has historically been prohibited from paying for health services for incarcerated people. So jails, prisons, and detention centers across the country have their own systems for providing health care, often funded by state and local budgets and not integrated with a public or private health system.
The new law is the first change to that prohibition since the Medicare and Medicaid Act's inception in 1965, and it came in a spending bill signed by President Joe Biden in 2022. It took effect Jan. 1 this year, and requires all states to provide medical and dental screenings to Medicaid- and CHIP-eligible youths 30 days before or immediately after they leave a correctional facility. Youths must continue to receive case management services for 30 days after their release.
More than 60% of young people who are incarcerated are eligible for Medicaid or CHIP, according to a September 2024 report from the Center for Health Care Strategies. The new law applies to children and young adults up to age 21, or 26 for those who, like Valdez, were in foster care.
Putting the law into practice, however, will require significant changes to how the country's thousands of correctional facilities provide health care to people returning to communities, and it could take months or even years for the facilities to be fully in compliance.
"It's not going to be flipping a switch," said Vikki Wachino, founder and executive director of the Health and Reentry Project, which has been helping states implement the law. "These connection points have never been made before," said Wachino, a former deputy administrator of the Centers for Medicare & Medicaid Services.
The federal CMS under the Biden administration did not respond to a question about how the agency planned to enforce the law.
It's also unclear whether the Trump administration will force states to comply. In 2018, President Donald Trump signed legislation requiring states to enroll eligible youths in Medicaid when they leave incarceration, so they don't experience a gap in health coverage. The law Biden signed built on that change by requiring facilities to provide health screenings and services to those youths, as well as ones eligible for CHIP.
Even though the number of juveniles incarcerated in the U.S. has dropped significantly over the past two decades, more than 64,000 children and young adults 20 and younger are incarcerated in state prisons, local and tribal jails, and juvenile facilities, according to estimates provided to KFF Health News by the Prison Policy Initiative, a nonprofit research organization that studies the harm of mass incarceration.
A 'Neglected Part of the Health System'
The federal Bureau of Justice Statistics estimates that about a fifth of the country's prison population spent time in foster care. Black youths are nearly five times as likely as white youths to be placed in juvenile facilities, according to the Sentencing Project, a nonprofit that advocates for reducing prison and jail populations.
Studies show that children who receive treatment for their health needs after release are less likely to reenter the juvenile justice system.
"Oftentimes what pulls kids and families into these systems is unmet needs," said Joseph Ribsam, director of child welfare and juvenile justice policy at the Annie E. Casey Foundation and a former state youth services official. "It makes more sense for kids to have their health care tied to a health care system, not a carceral system."
Yet many state and local facilities and state health agencies nationwide will have to make a lot of changes before incarcerated people can receive the services required in the law. The facilities and agencies must first create systems to identify eligible youths, find health care providers who accept Medicaid, bill the federal government, and share records and data, according to state Medicaid and corrections officials, as well as researchers following the changes.
In January, the federal government began handing out around $100 million in grants to help states implement the law, including to update technology.
Some state officials are flagging potential complications.
In Georgia, for example, the state juvenile justice system doesn't have a way to bill Medicaid, said Michelle Staples-Horne, medical director for the Georgia Department of Juvenile Justice.
In South Dakota, suspending someone's Medicaid or CHIP coverage while they are incarcerated instead of just ending it is a challenge, Kellie Wasko, the state's secretary of corrections, said in a November webinar on the new law. That's a technical change that's difficult to operationalize, she said.
State Medicaid officials also acknowledged that they can't force local officials to comply.
"We can build a ball field, but we can't make people come and play ball," said Patrick Beatty, deputy director and chief policy officer for the Ohio Department of Medicaid.
States should see the law as a way to address a "neglected part of the health system," said Wachino, the former CMS official. By improving care for people transitioning out of incarceration, states may spend less money on emergency care and on corrections, she said.
"Any state that is dragging its feet is missing an opportunity here," she said.
'Our System Is Making People Worse'
The Texas Department of Family Services took custody of Valdez when he was 8 because his mother's history of seizures made her unable to care for him, according to records. Valdez said he ran away from foster care placements because of abuse or neglect.
A few years later, he entered the Texas juvenile justice system for the first time. Officials there would not comment on his case. But Valdez said that while he was shuffled between facilities, his antidepressant and antipsychotic medications would be abruptly stopped and his records rarely transferred. He never received therapy or other support to cope with his childhood experiences, which included sexual abuse, according to his medical records.
Valdez said his mental health deteriorated while he was in custody, from being put in isolation for long periods of time, the rough treatment of officials, fears of violence from other children, and the lack of adequate health care.
"I felt like an animal," Valdez said.
In August, the U.S. Department of Justice released a report that claims the state exposes children in custody to excessive force and prolonged isolation, fails to protect them from sexual abuse, and fails to provide adequate mental health services. The Texas Juvenile Justice Department has said it is taking steps to improve safety at its facilities.
In 2024, 100% of children in Texas Juvenile Justice Department facilities needed specialized treatment, including for problems with mental health, substance use, or violent behavior, according to the department.
Too often, "our system is making people worse and failing to provide them with the continuity of care they need," said Elizabeth Henneke, founder and CEO of the Lone Star Justice Alliance, a nonprofit law firm in Texas.
Valdez said trauma from state custody shadowed his life after release. He was quick to anger and violence and often felt hopeless. He was incarcerated again before he had a breakdown that led to his hospitalization in 2022. He was diagnosed with post-traumatic stress disorder and put on medication, according to his medical records.
"It helped me understand that I wasn't going crazy and that there was a reason," he said. "Ever since then, I'm not going to say it's been easy, but it's definitely been a bit more manageable."
Of the more than 11,000 EMS agencies in the U.S. that provide ground transport to acute care hospitals, only about 1% carry blood.
This article was published on Monday, February 10, 1015 in KFF Health News.
One August afternoon in 2023, Angela Martin's cousin called with alarming news. Martin's 74-year-old aunt had been mauled by four dogs while out for a walk near her home in rural Purlear, North Carolina. She was bleeding heavily from bites on both legs and her right arm, where she'd tried to protect her face and neck. An ambulance was on its way.
"Tell them she's on Eliquis!" said Martin, a nurse who lived an hour's drive away in Winston-Salem. She knew the blood thinner could lead to life-threatening blood loss.
When the ambulance arrived, the medics evaluated Martin's aunt and then did something few emergency medical services crews do: They gave her a blood transfusion to replace what she'd lost, stabilizing her sinking blood pressure.
The ambulance took her to the local high school, and from there a medical helicopter flew her to the nearest trauma center, in Winston-Salem. She needed more units of blood in the helicopter and at the hospital but eventually recovered fully.
"The whole situation would have been different if they hadn't given her blood right away," Martin said. "She very well might have died."
More than 60,000 people in the U.S. bleed to death every year from traumatic events like car crashes or gunshot wounds, or other emergencies, including those related to pregnancy or gastrointestinal hemorrhaging. It's a leading cause of preventable death after a traumatic event.
But many of those people likely wouldn't have died if they had received a blood transfusion promptly, trauma specialists say. At a news conference last fall, members of the American College of Surgeons estimated that 10,000 lives could be saved annually if more patients received blood before they arrived at the hospital.
"I don't think that people understand that ambulances don't carry blood," said Jeffrey Kerby, who is chair of the ACS Committee on Trauma and directs trauma and acute care surgery at the University of Alabama-Birmingham Heersink School of Medicine. "They just assume they have it."
Of the more than 11,000 EMS agencies in the U.S. that provide ground transport to acute care hospitals, only about 1% carry blood, according to a 2024 study.
The term "blood deserts" generally refers to a problem in rural areas where the nearest trauma center is dozens of miles away. But heavy traffic and other factors in suburban and urban areas can turn those areas into blood deserts, too. In recent years, several EMS agencies throughout the country have established "pre-hospital blood programs" aimed at getting blood to injured people who might not survive the ambulance ride to the trauma center.
With blood loss, every minute counts. Blood helps move oxygen and nutrients to cells and keeps organs working. If the volume gets too low, it can no longer perform those essential functions.
If someone is catastrophically injured, sometimes nothing can save them. But in many serious bleeding situations, if emergency personnel can provide blood within 30 minutes, "it's the best chance of survival for those patients," said Leo Reardon, the Field Transfusion Paramedic Program director for the Canton, Massachusetts, fire department. "They're in the early stages of shock where the blood will make the most difference."
There are several roadblocks that prevent EMS agencies from providing blood. Several states don't allow emergency services personnel to administer blood before they arrive at the hospital, said John Holcomb, a professor in the division of trauma and acute care surgery at UAB's Heersink School.
"It's mostly tradition," Holcomb said. "They say: ‘It's dangerous. You're not qualified.' But both of those things are not true."
On the battlefields in the Middle East, operators of military medical facilities would maintain that only nurses and doctors could do blood transfusions, said Randall Schaefer, a U.S. Army trauma nurse who was deployed there and now consults with states on implementing pre-hospital blood programs.
But in combat situations, "we didn't have that luxury," Schaefer said. Medical staff sometimes relied on medics who carried units of blood in their backpacks. "Medics can absolutely make the right decisions about doing blood transfusions," she said.
A quick response made a difference: Soldiers who received blood within minutes of being injured were four times as likely to survive, according to military research.
Civilian emergency services are now incorporating lessons learned by the military into their own operations.
But they face another significant hurdle: compensation. Ambulance service payments are based on how far vehicles travel and the level of services they provide, with some adjustments. But the fee schedule doesn't cover blood products. If EMS responders carry blood on calls, it's usually low-titer O whole blood, which is generally safe for anyone to receive, or blood components — liquid plasma and packed red blood cells. These products can cost from $80 to $600 on average, according to Schaefer's study. And payments don't cover the blood coolers, fluid warming equipment, and other gear needed to provide blood at the scene.
On Jan. 1, the Centers for Medicare & Medicaid Services began counting any administration of blood during ambulance pre-hospital transport as an "advanced life support, level 2" (ALS2) service, which will boost payment in some cases.
The higher reimbursement is welcome, but it's not enough to cover the cost of providing blood to a patient, which can run to more than $1,000, Schaefer said. Agencies that run these programs are paying for them out of their own operating budgets or using grants or other sources.
Blood deserts exist in rural and urban areas. Last August, Herby Joseph was walking down the stairs at his cousin's house in Brockton, Massachusetts, when he slipped and fell. The glass plate he was carrying shattered and sliced through the blood vessels in his right hand.
"I saw a flood of blood and called my cousin to call 911," Joseph, 37, remembered.
The ambulance team arrived in just a few minutes, evaluated him, and called in the Canton-based Field Transfusion Paramedic Program team, which began administering a blood transfusion shortly thereafter. The program serves 30 towns in the Boston area. Since the transfusion program began last March, the team has responded to more than 40 calls, many of them related to car accidents along the ring of interstate highways surrounding the area, Reardon said.
Brockton has a Level 3 trauma center, but Joseph's injuries required more intensive care. Boston Medical Center, the Level 1 trauma center where the EMS team was taking Joseph, is about 23 miles from Brockton, and depending on traffic it can take more than a half hour to get there.
Joseph was given more blood at the medical center, where he remained for nearly a week. He eventually underwent three surgeries to repair his hand and has now returned to his warehouse job.
Although Boston has several Level 1 trauma centers, the region south of the city is pretty much a trauma desert, said Crisanto Torres, one of the trauma surgeons who cared for Joseph.
Boston Medical Center partners with the Canton Fire Department to operate the field transfusion program. It's an important service, Torres said.
"You can't just put up a new Level 1 trauma center," he said. "This is one way to blunt the inequity in access to care. It buys patients time."
SALINAS, Calif. — This coastal valley made famous by the novelist John Steinbeck is sometimes known affectionately as "America's salad bowl," though the planting and harvesting is done mostly by immigrants from Mexico.
For Taylor Farms, a major global purveyor of packaged salads and cut vegetables, that's made it a logical place to pioneer a novel type of health care for its workforce, one that could have broad utility in the smartphone era: cross-border medical consultations through an app.
The company is among the first customers of a startup called MiSalud, which connects Spanish-speaking Taylor Farms employees to physicians and mental health therapists in Mexico. Providers aren't licensed in the U.S. and can't prescribe medications but instead serve as health coaches who can dispense advice and work with a U.S.-based doctor if needed.
Amy Taylor, who has led the company's wellness initiative since 2014 and is the daughter-in-law of company founder Bruce Taylor, said about 5,600 of Taylor Farms' 6,400 employees who work where MiSalud is currently available have signed up for the app, and 2,300 have used the app at least once. The service is free for employees and up to three family members.
Amy Taylor said the company hopes the app, which is part of a broader wellness program, can help employees stay healthier while keeping health care and other labor costs in check. She plans a full evaluation once the program has been in place for two years.
The health of farmworkers is a major concern for the state's agricultural economy. A 2022 study led by researchers from the University of California-Merced evaluated the health of more than 1,200 farmworkers and found that 37% of men and 47% of women reported having at least one chronic condition, including common conditions such as diabetes, high blood pressure, and anxiety.
Taylor said her company's employees, ranging from fieldworkers and drivers to retail packaging and office staff, mirror the study's findings. She said predominant health concerns among workers include obesity, high blood pressure, diabetes, and mental health.
"These are the people who are feeding America healthy food," Taylor said of the company's employees. "They should also be healthy."
MiSalud — or "My Health" — was the inspiration of Bismarck Lepe, a serial entrepreneur and Stanford graduate, who hails from a migrant farmworker family. Until age 6, when his family settled in Oxnard, California, they would travel between Mexico, California, and Washington state to harvest fruit. He saw that family and friends often delayed health care until they could return to Mexico because the U.S. system was too difficult to navigate, and insurance coverage too expensive or hard to find.
"My mother still prefers to get her health care in Mexico," Lepe said. "It's easier for her."
Lepe and co-founders Wendy Johansson and Cindy Blanco Ochoa launched MiSalud Health in 2021 with $5 million from a venture capital fund backed by Melinda French Gates' Pivotal Ventures, which focuses on social-impact investing. It has since added Samsung Next and Ulu Ventures as investors.
MiSalud started out by offering consultations with Mexican physicians for individuals who downloaded the app, Johansson said. But people keen enough to find the app, download it, and sign up for the program themselves weren't ultimately those who needed it most, and in 2023 the company pivoted to offering its service to companies as an employee benefit. (Individuals can still use it too.)
Besides Taylor Farms, the company counts the California city of Lynwood among about a dozen other clients, according to Johansson. MiSalud touted that nearly 40% of employees served by its platform say that without the app they would either have ignored their health concerns or waited until they could travel to Mexico to see a doctor.
Paul Brown, a UC-Merced professor of health economics who contributed to the university's farmworker health study, warned that telehealth consultations aren't adequate substitutes for in-person care by a primary care physician or a specialist. However, "to the extent that these types of programs can kind of link people into more standard care, that's good," he added.
Brown said MiSalud's approach could be more effective if policies changed to allow Mexican doctors to more easily treat patients in the U.S. A California program begun in 2002 allows Mexican doctors to travel to the Salinas Valley and other heavily Latino communities and treat patients, but cross-border telemedicine, even between states, remains limited.
Even so, Taylor Farms employees say the app has been helpful. Rosa "Rosita" Flores, a line supervisor with the company's retail operations, said she decided to give MiSalud a try after co-workers raved about it.
A recent company wellness fair, partly sponsored by MiSalud, had alerted her to the importance of monitoring her blood sugar and blood pressure levels, so she booked an appointment on the app to discuss it. "The app is very easy to use," she said in Spanish. When she had to cancel a video chat after her daughter got sick, the health coaches followed up by text.
Proponents of cross-border medicine say the approach helps bridge linguistic and cultural barriers in health care. Almost half of all U.S. immigrants — about two-thirds of whom are native Spanish speakers — have limited proficiency in English, and research has repeatedly shown that language barriers often discourage people from seeking care.
For example, Alfredo Alvarez, a MiSalud health coach who is a licensed physician in Mexico, pointed to belief in el mal de ojo, or the "evil eye" — the idea that a jealous or envious glance by someone can cause harm, especially to children. An American doctor might be dismissive of the notion, but he understands.
"This isn't uncommon here," he said of Mexico. "It's a belief in traditional medicine."
It's not that Alvarez encourages his socios, or members, to pass an egg over the child or make the child wear a special bracelet — traditional ways of diagnosing and treating el mal de ojo. Rather, he acknowledges their traditions and steers them to evidence-based medicine.
MiSalud's coaches can try to break stereotypes as well. For example, Alvarez said, a Mexican reverence for machismo can translate to the idea that "men don't do doctor visits." Meanwhile, he said, women may overlook their health in prioritizing other family members' needs.
Coaches also try to remove the stigma around seeking mental health treatment. "A lot of our socios have been extremely uncomfortable with or wary of mental health professionals," said Rubén Benavides Crespo, a MiSalud mental health coach who is a licensed psychologist in Mexico.
The app tries to break through by making it easy to book counseling appointments and asking questions such as whether someone has trouble sleeping, rather than invoking more worrisome or potentially stigmatizing terms like anxiety or depression.
MiSalud representatives say the app saw a 50% increase in requests for mental health support following the November presidential election. A more common request, however, is grief counseling, often following the loss of a loved one.
"Loss requires adaptation," Benavides said.
For Sam Chaidez, director of operations for a Taylor Farms location in Gonzales, MiSalud is a welcome addition for weight management. The son of fieldworkers, Chaidez graduated from UC-Davis and returned to the Salinas Valley to work for the company in 2007.
In 2019, Chaidez, a new parent at the time, began to understand his risk for diabetes and other health problems because of Taylor Farms' wellness program. Through diet and exercise and, more recently, coaching by MiSalud, Chaidez has shed 150 pounds.
Chaidez encourages co-workers to walk with him at lunch, and he credits MiSalud coaches for helping him keep the weight off and stay healthy. "It's been a great help," he said.
Gloria Sachdev has spent years challenging the healthcare industry, trying to bring down the high cost of care.
It's working, even in an unlikely place: Indiana, which has had some of the nation's highest hospital prices. Over the past few years, Indiana lawmakers have passed bills pushed by Sachdev that target complex and sometimes wonky health policy issues.
Sachdev, 55, trained as a pharmacist and for years led a coalition of Indiana businesses. In her quest to shake up the status quo, she sparked the creation of a national report on hospital pricing. She won over powerful Republican donor Al Hubbard, who has championed her proposals. She's convened healthcare experts from across the country to tackle cost transparency. In turn, all this has elevated her profile in Indiana and beyond.
Now, this disruptor has ascended to a position of power in the Hoosier State. Indiana's new Republican governor, Mike Braun, appointed her to a newly created Cabinet position overseeing the state's healthcare agencies.
Republican leaders in Indiana have been receptive to Sachdev's work, persuaded by her argument that the free-market approach of limited government intervention, long favored by the GOP, doesn't work with healthcare.
"I believe in a free market, too," she said.
But healthcare isn't like a grocery store where shoppers have lots of options in the cereal aisle and can see the prices. Too often, Indiana patients are left with few choices and no price transparency, Sachdev said. That messaging has resonated with Indiana Republicans, she said, because they see it in their own communities.
A decade ago, when she began representing frustrated employers as chief executive of the Employers' Forum of Indiana, she asked the businesses within that coalition to identify their biggest pain point: "They unanimously said healthcare affordability."
Sachdev had spent years training as a pharmacist, pursuing a career in healthcare like her father. He was a researcher at the University of Oklahoma who made advances in decoding cystic fibrosis, a life-threatening genetic disorder that damages the lungs.
In her own career, Sachdev said, she has always sought answers to seemingly simple questions, driven by data and her belief that sound policy stems from rigorous analysis of the available evidence. So to examine the employers' concerns, she sought to find out how healthcare prices in Indiana compared with those in other states. No such data existed at the time.
She cold-called Chapin White, then an economist at the Rand Corp. research organization, and persuaded him to help her find the answer. After some initial studies of Indiana, Rand published a study in 2019 that analyzed the prices paid by private health plans to more than 1,500 hospitals across the nation.
The results shocked her: Indiana landed at the top of the list, with the highest hospital prices among the 25 states initially studied. Sachdev was incredulous that her adopted state had earned such a dubious distinction. "We're not New York City," she said.
The results emboldened her — and state lawmakers — to take action. "When we're highlighted like that, it certainly requires our attention," said Chris Garten, the majority floor leader in the Indiana Senate and a former chair of the General Assembly's oversight task force on healthcare costs.
The push for transparency also gained momentum nationally, leading President Donald Trump to issue an executive order in his first term that required hospitals to publicly disclose prices.
"Gloria was the catalyst for getting this started," said Brown University economist Christopher Whaley, one of the other authors of the price transparency report while at Rand.
Consolidation has fueled higher prices in medical care. But Indiana is an outlier in how it chose to respond to consolidation, at least among red states, said Katie Gudiksen, executive editor of The Source on Healthcare Price and Competition, an online resource from the University of California Law-San Francisco.
Over the past few years, Indiana legislators have enacted laws to combat consolidation, banning large hospital systems from tacking on extra fees, restricting employers from imposing non-compete contracts on primary care physicians, and requiring healthcare companies to report pending mergers to the state's attorney general.
Sachdev called the move to ban extra fees in some hospitals a major victory. Across the U.S., hospitals may add an extra charge to a bill, known as a facility fee, even when the visit happens outside the hospital at an affiliated doctor's office. Indiana's law not only lowers prices, she said, but also removes an incentive for hospitals to buy up physician practices for the purpose of tacking on a facility fee.
"All of our efforts are really in this space of increasing competition," she said.
Last spring, Sachdev drew national medical pricing experts to Indianapolis for a conference on healthcare transparency. Celebrity entrepreneur Mark Cuban, a critic of high prices in the industry, was a keynote speaker.
At the conference, the latest installment of the Rand report was unveiled. Indiana had fallen from the top spot to the state with the ninth-highest prices.
Last fall, however, a hospital merger threatened to undo some of Sachdev's wins in Indiana. Rival hospitals in Terre Haute were seeking to merge. The deal would have left the city and those in the surrounding rural areas with a hospital monopoly, and such consolidations elsewhere have been shown to raise medical prices.
Under the state's Certificate of Public Advantage law, the deal would have been shielded from federal anti-monopoly restrictions. Two dozen states have had COPA laws on their books at some point, despite warnings from the Federal Trade Commission that such hospital mergers can become difficult to control and may decrease the overall quality of care.
The deal faced immense pushback. Doctors, health economists, and the FTC called on the Indiana Department of Health to deny Union Health's application to merge with HCA Healthcare-owned Terre Haute Regional Hospital.
In an opinion piece in The Indianapolis Star, Sachdev urged regulators to consider the harm that came after similar mergers elsewhere.
"The evidence shows how deals, like the one in Terre Haute, can crush communities," Sachdev wrote with Zack Cooper, a health economist and associate professor at Yale University.
"I was thrilled," Sachdev said. "The writing was on the wall that it would have been denied."
Now, Indiana state Sen. Ed Charbonneau, a Republican and chair of the Senate health committee, has introduced a bill to repeal the state's COPA law. Indiana would become the sixth state to roll back such a law.
Describing Sachdev as aggressive and analytical, Charbonneau said she regularly shares her thoughts about the COPA law and other healthcare issues. "Gloria is not at all reluctant to come and talk to me or call me or text me," he said.
When Braun appointed her as secretary of health and family services, he said in a statement that her "proven track record of transforming healthcare delivery and costs makes her the ideal choice to lead Indiana's health initiatives."
Braun's healthcare agenda targets prices that "are robbing Hoosiers' paychecks," according to his campaign platform, which adds, "Without intervention, the strain will only get worse."
In his second week as governor, Braun signed multiple executive orders seeking to increase transparency, directing state agencies to review the practices of pharmacy benefit managers and evaluate pricing. He also has said he plans to build on the legislature's "ambitious work" of tackling affordability. With Republicans in control of the legislature, Braun is unlikely to encounter political gridlock, a reality that excites Sachdev.
"I've been working from the ground up, and we've made progress," she said. "If I'm helping Gov. Braun from the top down, we can make faster, greater progress."
WALHALLA, S.C. — Nestled in the foothills of the Blue Ridge Mountains, a small primary care clinic run by Clemson University draws patients from across the region. Many are Hispanic and uninsured, and some are willing to travel from other counties, bypassing closer healthcare providers, just to be seen by Michelle Deem, the clinic's bilingual nurse practitioner.
"Patients who speak Spanish really prefer a Spanish-speaking provider," Deem said. "I've gotten to know this community pretty well."
Clemson doesn't operate an academic medical center, nor does it run a medical school. Arguably, the public university is best known for its football program. Yet, with millions of dollars earmarked from the state legislature, it has expanded into delivering healthcare, with clinics in Walhalla and beyond. School leaders are attempting to address gaps in rural and underserved parts of a state where health outcomes routinely rank among the worst in the country.
"Some of these communities have such high need," said Ron Gimbel, director of Clemson Rural Health, which operates four clinics and a fleet of mobile health units as part of the university's College of Behavioral, Social and Health Sciences. "They have so many barriers that impact their ability to be healthy."
Clemson Rural Health is one of several programs attempting to meet this need in the state.
State lawmakers nationwide are spending millions of dollars to address a rural healthcare crisis long in the making. For more than a decade, though, Republican-controlled legislatures in most Southern states have refused billions in federal funds that would provide public health insurance coverage to more low-income adults. These are the same states where racial health disparities and health outcomes are often worse than in other regions.
Nearly every state has extended Medicaid coverage for women in the months after they give birth. But 10 states haven't fully expanded Medicaid coverage with federal money made available under the 2010 Affordable Care Act. Seven of these states — Alabama, Florida, Georgia, Mississippi, South Carolina, Tennessee, and Texas — are in the South. With few exceptions, adults without children in these states don't qualify for Medicaid coverage, regardless of their income level.
Georgia Gov. Brian Kemp and South Carolina Gov. Henry McMaster, both Republicans, recently announced plans to expand Medicaid in limited ways to include some parents. The South Carolina plan would impose work requirements on some of these newly eligible Medicaid beneficiaries, while the Georgia plan would allow some parents of young children to skirt the state's existing Medicaid work rules. Both plans require federal approval.
Jonathan Oberlander, a professor and health policy scholar at the University of North Carolina, said he doesn't expect to see any of the remaining states rushing to fully expand Medicaid. Before Donald Trump took office on Jan. 20, Republicans in Washington had already expressed their intention to dramatically cut spending for Medicaid, which covers 72 million people at a cost of nearly $900 billion.
"There's a large gray cloud hanging over Medicaid expansion right now, and that's because there's so much uncertainty about what the Trump administration and congressional Republicans are going to do," Oberlander said.
Even so, in South Carolina this year the advocacy group CoverSC plans to lobby the General Assembly to pass a bill to adopt Medicaid expansion, said Beth Johnson, regional government relations director for the American Cancer Society Cancer Action Network and a CoverSC board member. The state's legislative session began Jan. 14.
If such a measure were approved, the federal government would cover 90% of the state's Medicaid expansion costs and South Carolina would be expected to pay 10%, or an estimated $270 million during the first year, according to a 2024 report by the Milken Institute School of Public Health at George Washington University.
Across all 10 non-expansion states — which, outside the South, also include Kansas, Wisconsin, and Wyoming — about 1.5 million people fall into a coverage gap, according to 2024 estimates from KFF, the health information nonprofit that includes KFF Health News. That means they do not qualify for Medicaid coverage or financial assistance to buy insurance through the federal marketplace.
Many of the people who would qualify for Medicaid if these states were to expand eligibility are gig workers, Johnson said. They play music, drive for Uber, or deliver pizza, and they typically don't qualify for health insurance through their jobs.
"They are providing services that we all appreciate," she said. "And they simply can't afford health insurance."
In some South Carolina communities, Clemson Rural Health attempts to fill this gap by providing primary care, cancer screenings, nutrition education, and diabetes management for uninsured patients free of charge or at reduced rates. Only about half of the patients seen by Clemson Rural Health have health insurance, Gimbel said, compared with 92% of the U.S. population.
During the current state fiscal year, Clemson Rural Health has been underwritten by a $2.5 million contract, its largest source of funding, from the state Department of Health and Human Services, which administers Medicaid in South Carolina and operates with a budget approved by state lawmakers.
That's a relatively small amount of money compared with the $47.5 million the state legislature has given to the Medical University of South Carolina in recent years to move into rural communities. MUSC has served Charleston for most of its 200-year history, but since 2019 it has expanded across the state by purchasing, building, or partnering with seven rural hospitals — some on the brink of closure — and one freestanding emergency department. MUSC is set to open an additional rural hospital this year.
Other states have made similar investments. The University of Georgia, for example, has established a new medical school, partly to send more physicians into underserved and rural areas. The Georgia General Assembly kicked in half the cost of a new $100 million building for medical education and research in Athens.
Meanwhile, the Tennessee General Assembly passed a budget last year that included $81 million for a variety of rural health initiatives.
Outside the South, state legislatures in Colorado, Nevada, West Virginia, and elsewhere have made recent investments in rural health, in addition to expanding Medicaid eligibility.
Some of this spending has been prompted by a wave of rural hospital closures — more than 100 since 2010, according to the Cecil G. Sheps Center for Health Services Research at the University of North Carolina.
It's not yet clear what long-term impact some of these initiatives will have — for instance, whether the Clemson program will "reduce premature mortality, decrease preventable hospitalizations, and improve overall quality of life," as it aims to do, according to its website. Some public health experts point out that bolstering the number of rural clinics, hospitals, and doctors in the South won't matter much if patients can't afford to make an appointment.
"Lack of ability to pay is one of the greatest barriers," said Adams, the Office of Rural Health chief.
Oberlander said conservative lawmakers often consider projects such as building new rural clinics more politically palatable than expanding Medicaid coverage.
"The further away you get from the ACA, the less polarized the politics of healthcare," he said.
South Carolina Senate President Thomas Alexander, a Republican who lives in Walhalla, said the General Assembly is willing to invest in some rural health initiatives to improve healthcare access.
"Just because you expand Medicaid doesn't mean you've expanded access to the services," Alexander said. "I want to focus on expanding access to the services."
Gimbel would not comment on Medicaid expansion in South Carolina, and he said it's too soon to know how federal Medicaid changes under the Trump administration might affect funding for Clemson Rural Health, which currently receives money from the state's Medicaid agency. But making the Clemson program financially solvent might take several more years, he said.
"If rural health was profitable," he said, "we wouldn't have a rural health problem."
President Donald Trump ratcheted up his administration’s reversal of transgender rights on Tuesday with an executive order that seeks to intervene in parents’ medical decisions by prohibiting government-funded insurance coverage of puberty blockers or surgery for people under 19.
This article was published on Friday, January 31, 2025 in KFF Health News.
President Donald Trump ratcheted up his administration’s reversal of transgender rights on Tuesday with an executive order that seeks to intervene in parents’ medical decisions by prohibiting government-funded insurance coverage of puberty blockers or surgery for people under 19.
Trump’s order, titled “Protecting Children From Chemical and Surgical Mutilation,” is certain to face legal challenges and would require congressional or regulatory actions to be fully enacted. But transgender people and their advocates are concerned it will nonetheless discourage prescriptions and medical procedures they consider to be lifesaving in some cases, while complicating insurance coverage for gender-affirming care.
“It can’t be understated how harmful this executive order is, even though it doesn’t do anything on its own,” said Andrew Ortiz, a senior policy attorney at the Transgender Law Center. “It shows where the administration wants to go, where it wants the agencies to put their efforts and energies.”
The order is one of several Trump has issued, less than two weeks since taking office, that target the trans community. He has directed his administration to recognize only the male and female sex — and to abandon the term “gender” altogether. He ordered the State Department to issue passports identifying Americans only by their genders assigned at birth. He has encouraged the Justice Department to prosecute teachers and other school officials who help trans children transition, including by using their preferred names. And he signed an order that’s expected to lead to transgender people being banned from military service.
“We’re terrified. We cry every day. Hurting my family and my kid is winning politics for Republicans right now,” said the parent of a transgender child who lives in Missouri and asked not to be identified for fear of being targeted. “Every bone in my body is telling me I can’t keep my child safe from my government anymore, I can’t keep my family safe.”
About 300,000 American children ages 13-17 identify as transgender, according to the Williams Institute at the UCLA School of Law, which researches sexual orientation and gender identity law and public policy. But the number who seek gender-affirming care is believed to be far fewer. An examination by Reuters and Komodo Health of about 330 million health insurance claims filed from 2017 to 2021 found that fewer than 15,000 patients ages 6 to 17 with a diagnosis of gender dysphoria had received gender-affirming hormone therapy and fewer than 5,000 had started puberty-blocking medications — though the annual number of such patients more than doubled over the five-year span.
Trump’s order seeking to disrupt insurance coverage for young people, the Williams Institute said in a brief, “will likely at least limit the availability of gender-affirming care or make it more difficult to access in the short term and could increase risk for both providers and recipients of the care.”
Much of what the order calls for would require rule changes or other federal guidance, which can take weeks to months. Though it is mostly directed toward government health insurance programs, the order could have private-sector implications, too, and is likely to face litigation from states or advocacy organizations.
Specifically, the directive intends to limit insurance coverage for hormonal or surgical treatments that help young people transition.
It directs the secretary of the Department of Health and Human Services to “take all appropriate steps” to end insurance coverage of such treatments. It specifically names several government programs such as Tricare, which serves the military and its dependents; Medicare and Medicaid; federal and postal health benefit programs; and the Foreign Service Benefit Plan.
“The aim here is clearly targeted at federally funded plans, such as Medicare and Medicaid, but there’s a lack of clarity as to whether it would impact other plans, such as exchange plans, where essential health benefits are required,” said Lindsey Dawson, director of LGBTQ Health Policy at KFF, the health policy research, polling, and news organization that includes KFF Health News.
State Medicaid programs vary widely in their rules around transgender care, with a variety of limits or restrictions on what types of care can be covered for minors in just over half the states, according to a map provided by the Colorado-based Movement Advancement Project, a nonprofit think tank.
While little is likely to happen immediately from the order — one of more than 100 issued by the president since his inauguration last week — it could, nonetheless, have a chilling effect on medical professionals.
The order directs the Department of Justice to work with Congress to promote legislation that would allow children and parents a “private right of action” — the ability to file a lawsuit — against medical professionals who provide transgender care.
And the Justice Department was also directed to consider the application of existing laws to those who provide or promote access to gender care.
In addition, one section of the order directs agencies to “take appropriate steps to ensure that institutions receiving Federal research or education grants end the chemical and surgical mutilation of children,” a move that could affect hospitals or medical schools.
Julian Polaris, a partner at the consulting firm Manatt, said the order “displays the federal government’s willingness to use federal programs to restrict access to disfavored services even to providers and patients outside those federal programs.”
The move drew immediate criticism from groups supporting LBGTQ+ people’s rights.
“It is unconscionable that less than 24 hours after trying to take away Head Start programs and school meals for kids, President Trump issued an order demonizing transgender youth and spreading dangerous lies about gender-affirming care,” Alexis McGill Johnson, president and CEO of Planned Parenthood Federation of America, wrote in a press release.
Because it defines “youths” as those under age 19, the order would apply the directives to medical treatments provided to 18-year-olds, who otherwise are considered adults in making legal choices, voting, or serving in the military.
“There’s also just a problem with not seeing young people as capable in making decisions around their health and their futures, and so blurring that line and trying to move it up and taking more control over more people is obviously concerning,” Ortiz said. “But having the line hard at 18 also doesn’t make it any better.”
Ortiz noted that the order contains misinformation about medical care for young people who are transitioning and targets a small subset of U.S. residents: transgender youths in families that can access and afford gender-affirming care.
“That should be concerning to everybody,” he said, “that they are pulling out populations to target, to say that, ‘We don’t think that you deserve access to best-practice medical care.’”
Trump’s order explained that the action was necessary because such medical treatment could cause young people to regret the move later, once they “grasp the horrifying tragedy that they will never be able to conceive children of their own or nurture their children through breastfeeding.”
KFF Health News Midwest correspondent Bram Sable-Smith contributed to this report.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.