McLeod, who lives near Charleston, South Carolina, is still paying off chemotherapy bills that followed her 2017 diagnosis. She also now faces an onslaught of out-of-pocket costs for follow-up monitoring and care, including regular visits to a pulmonologist and allergist.

McLeod, 45, said she had already spent $2,500 in the first two months of the year and owes an additional $1,300 from a January colonoscopy. That’s on top of the $895 monthly premium for a health insurance plan that covers her family of six.

Those costs have led McLeod to ration her other care. Despite feeling intense chest pain since February, for example, she is putting off a CT scan and a visit to a heart specialist.

“You’re forced to pick and choose as to where your priorities really need to be,” said McLeod, director of strategic programs and partnerships at the Cancer Hope Network, a nonprofit that supports cancer patients. Even in that role, she struggles to navigate the financial aftermath of surviving the disease.

The cost of postcancer care often “keeps us hostage,” she said.

McLeod is one of nearly 19 million U.S. cancer survivors, many of whom continue to need prescriptions, doctor visits, and procedures to monitor their condition and manage posttreatment side effects. Of more than 1,200 cancer patients and survivors , about 47% said they had carried medical debt, with nearly half having owed more than $5,000, according to the American Cancer Society Cancer Action Network.

Yet health policy researchers and patient advocates said the experiences of cancer survivors reveal the limits of the Trump administration’s proposals to lower premiums, which may not help patients who accumulate large medical bills year after year. The proposals center on increasing the availability of high-deductible health plans, which have lower monthly payments but require patients to pay thousands of dollars out-of-pocket before coverage kicks in.

In addition, the administration has supported allowing insurers more leeway to sell plans that are not compliant with the Affordable Care Act. Such plans could bar people who have preexisting health conditions, like a cancer diagnosis, and exclude that ACA plans are required to cover.

The administration did not answer a request for comment on how its proposals would affect cancer survivors. But its supporters say, in general, people would have more flexibility to personalize coverage and more options for plans with lower monthly fees.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank, believes patients would have better control over spending, and the option to choose what kind of care gets covered, if health plans were exempted from the ACA’s regulations. A person could opt for a plan that includes cancer treatment but not maternity care, for example.

History proves insurance coverage is not that simple, especially for people with preexisting conditions, said Jennifer Hoque, an associate policy principal with the American Cancer Society Cancer Action Network. When health plans could “pick and choose” enrollees based on preexisting conditions prior to the ACA, people needing the costliest care often struggled to find coverage, she said.

“They’re not going to choose a cancer survivor,” Hoque said of health insurers.

That was the case for Veronika Panagiotou, who said private insurers refused her coverage back in September 2013 because she had a high body mass index. Two months later, as a 25-year-old uninsured graduate student, she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she recalled, “and sent me all the bills.”

In January 2014, Panagiotou was able to buy one of the first ACA plans that went into effect. It covered chemotherapy and immunotherapy treatment, imaging, medications, hospital stays, weekly blood draws, a blood transfusion, and emergency room visits.

Now Panagiotou, 37, is cancer-free and works as director of advocacy and programs at Cancer Nation, a nonprofit advocacy group. Even though she is covered through her employer, Panagiotou said treatment-related expenses weigh heavily on her life decisions.

“Every choice I make, I think about cancer,” she said.

Chris Bond, a spokesperson for AHIP, the main health insurance trade association, said its members are working to improve access to coverage. But that can be a challenge when doctors and drugmakers are hiking prices, he said. Health plans are trying to “shield Americans from the full impact of those rising costs,” Bond said.

The Lymphoma Research Foundation has seen a 10% increase in applications to its patient aid fund this year, CEO Meghan Gutierrez said. “This trajectory suggests that financial safety nets, when they exist, are straining,” she said.

Rising prices are affecting everyone, regardless of the kind of health insurance they have, if any, said Brian Blase, president of Paragon Health Institute, a Republican-aligned think tank. “The biggest challenge for cancer patients isn’t the type of coverage,” he said. “It’s the underlying cost of care.”

Blase pointed to President Donald Trump’s as potentially helpful to cancer survivors. The Medicare Drug Price Negotiation Program, established by the Inflation Reduction Act of 2022, required the Department of Health and Human Services to negotiate prices for certain high-cost drugs, to lower prices for the federal health insurance program for people ages 65 and older. Drugs for breast, prostate, and kidney cancers are already on that list, .

Yet Hoque fears efforts to weaken ACA protections and financial support for marketplace plans will give cancer survivors — who she said tend to “hang on to insurance for dear life” — fewer options, especially between jobs or during career changes.

Erin Jones, a 31-year-old food policy researcher living in Fort Collins, Colorado, who was diagnosed with Hodgkin lymphoma as a young adult, is now cancer-free but still sees two oncologists, visits a high-risk breast clinic, and gets a breast MRI annually. Jones gets health insurance through the university where she works, and said she recently deferred acceptance to a PhD program partly due to uncertainty over affordable coverage.

“I don’t have the freedom to do the things I want to do as easily,” she said, “because I am constantly worried about health insurance.”

Costs related to surviving cancer, including monitoring for recurrence and treatment of side effects, were expected to reach $246 billion by 2030, up from $183 billion in 2015, according to .

Advancements in both detecting and curing cancer have resulted in a higher percentage of people surviving five years or more after diagnosis, according to the American Cancer Society. The number of survivors is expected to grow to more than 22 million people by 2035, .

Despite these advancements, the cost of treatment can steal the spotlight, said Ezekiel Emanuel, a co-director of the Healthcare Transformation Institute at the University of Pennsylvania and a onetime health policy adviser to former President Barack Obama.

An oncologist, Emanuel said he had observed patients make the difficult decision to delay or skip postcancer care as a result.

“Even when we triumph,” he said, “we don’t seem to be able to have a celebration.”

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact Â鶹ŮÓÅ Health News and share your story.

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But seven months later, findings from five states shared with Â鶹ŮÓÅ Health News show that the reviews have uncovered little evidence of a widespread problem.

Only U.S. citizens and some lawfully present immigrants are eligible for Medicaid, which covers health care costs for people with low incomes and disabilities, and the closely related Children’s Health Insurance Program. Both programs are administered by states.

Spokespeople from Pennsylvania’s and Colorado’s Medicaid agencies said, as of March, the states had found no one who needed to be terminated from Medicaid. That was after checking a combined 79,000 names.

Texas has reviewed records of more than 28,000 Medicaid enrollees at the Trump administration’s request and terminated coverage for 77 of them, according to Jennifer Ruffcorn, a spokesperson for the Texas Department of Human Services.

Ohio has checked 65,000 Medicaid enrollees, of which 260 people were disenrolled from the program, said Stephanie O’Grady, a spokesperson for the Ohio Department of Medicaid.

In Utah, 42 of the 8,000 enrollees identified by the Trump administration had their Medicaid coverage terminated, said Becky Wickstrom, a spokesperson for the state’s Department of Workforce Services.

In announcing the reviews, Health and Human Services Secretary Robert F. Kennedy Jr. said: “We are tightening oversight of enrollment to safeguard taxpayer dollars and guarantee that these vital programs serve only those who are truly eligible under the law.”

Leonardo Cuello, a research professor at Georgetown University’s Center for Children and Families, said the reviews ordered by the federal Centers for Medicare & Medicaid Services were unneeded because states check immigration status when people sign up.

“It is entirely predictable that all of these burdensome reviews that the federal government is forcing upon states would yield no pay dirt,” Cuello said. “The states had already done the reviews once, and CMS was just making them reverify the same information they had already checked. Making states go through the same bureaucratic process twice is incredibly wasteful and inefficient.”

CMS spokesperson Chris Krepich said in a statement to Â鶹ŮÓÅ Health News that the ongoing checks are verifying eligibility “for certain enrollees whose status could not be confirmed through federal data sources.”

“CMS provides states with regular reports for follow-up review, and states are responsible for independently verifying eligibility and taking appropriate action consistent with federal requirements,” he said.

But the findings shared with Â鶹ŮÓÅ Health News also suggest that many of the enrollees whose eligibility the Trump administration said it could not confirm are indeed U.S. citizens. O’Grady said Ohio found that, of the 65,000 names referred by the federal government, the state already had information on 53,000 confirming them as citizens and an additional 11,000 showing appropriate immigration status for Medicaid.

Caseworkers then worked on the remaining 1,000 names to review their information or reach out for more details, she said.

CMS did not answer questions about the findings from the states sampled by Â鶹ŮÓÅ Health News or provide information about responses it received from all 50 states and the District of Columbia, which were instructed to perform verification checks.

The agency also did not respond to a question about whether it’s forwarding the names of those whose Medicaid coverage was terminated to federal immigration officials.

In June, advisers to Kennedy ordered CMS to share information about Medicaid enrollees with the Department of Homeland Security, prompting a lawsuit by some states alarmed that the administration would use the information for its deportation campaign against residents living in the U.S. without authorization.

A federal judge that Immigration and Customs Enforcement workers could access information only about people in the country unlawfully in the Medicaid databases of the states that sued.

CMS continues to send states lists of names at least every few months, though state officials say the numbers have declined since the first batch last summer.

People without legal status are ineligible for federally funded health coverage, including Medicaid, Medicare, and plans through the Affordable Care Act marketplaces. Medicaid does reimburse hospitals for providing emergency care to people without legal status if they meet income and other program requirements.

Seven states and the District of Columbia provide health coverage regardless of immigration status, funding the programs with their own money.

In March 2025, CMS began financial reviews of those programs. “CMS has identified over $1.8 billion in federal funds that are being recouped through voluntary returns and deferrals of future federal Medicaid payments,” Krepich said. He did not answer how much has been collected so far or from which states.

Medicaid’s overall spending topped $900 billion in fiscal year 2024.

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It’s one of the many parts of the 25-bed rural hospital that need updating, former CEO Ron Wiens said.

He said the hospital, an essential service in its namesake town of nearly 800 residents in the state’s sprawling north-central high plains, needs at least $1 million for deferred maintenance, including a failing HVAC system. But the facility has struggled to make payroll each month and can’t afford to make all the fixes, Wiens said.

Built by farmers and ranchers in 1965, Big Sandy Medical Center began with nine beds. Today, a similar community effort — donations and grants to plug financial holes each year — keeps it afloat.

Wiens, who recently left his position at the hospital, said he wishes Big Sandy could get funding from Montana’s share of the $50 billion federal Rural Health Transformation Program to renovate the hospital and direct payments to help secure its future. The state received more than $233 million in its first-year award.

But the hospital may not get the kind of help he sought.

That’s because the five-year program focuses on new, creative ways to improve access to rural health care, not on directly funding services and renovations. And Montana is one of at least 10 states whose leaders say projects launched under the federal program could lead rural hospitals to cut services so they can continue to afford to offer emergency and other essential care.

Congressional Republicans created the fund as a last-minute sweetener to their One Big Beautiful Bill Act, signed into law last summer. The funding was intended to offset disproportionate fallout anticipated in rural communities from the law, which is expected to slash Medicaid spending .

includes programs to make it easier for rural residents to get medical care and live a healthy lifestyle. For example, it says funding can be used to start community gardens, train paramedics to make home visits, open school-based clinics, or bring mobile clinics to rural areas.

rural Montana hospitals can receive payments for implementing recommendations, “including right-sizing select inpatient services” to match demand. In some cases, it says, right-sizing might mean “downsizing.” The state says hospitals will have input and recommendations will be specific to each facility.

“That’s what has all the hospitals on pins and needles, words like restructuring, reducing inpatient beds. Everybody is going, ‘What is this going to look like?’” Wiens said.

The Montana Department of Public Health and Human Services declined to answer questions about how it will carry out its right-sizing efforts.

A Lifeline of Care

Big Sandy cattle rancher Shane Chauvet doesn’t want any services cut.

He credits Big Sandy Medical Center with saving his life after a flying piece of metal nearly cut off his arm during a windstorm a few years back.

“I looked over, saw it coming, and whack!” Chauvet recalled.

His wife drove him to the hospital, where they frantically pounded on the ER door while Chauvet’s blood pooled on the ground.

Because of the storm, staffers worked on Chauvet with no power and no ability to summon a helicopter. He was then taken by ambulance 80 miles through intense rain and hail to a larger hospital.

Chauvet understands the state’s plan doesn’t call for eliminating emergency care, but he worries that reducing other services would set off a downward spiral for the hospital and his town.

In Oklahoma, realigning clinical services could mean “shutting down service lines,” to the federal program. And in Wyoming, any facility that receives funding must agree to “reduce unprofitable, duplicative or nonessential service lines,” .

Monique McBride, business operations administrator at the Wyoming Department of Health, said the department interprets right-sizing as helping rural hospitals provide essential services — such as emergency departments, ambulance services, and labor and delivery units — while maintaining long-term, financial stability.

“This might involve limiting some elective procedures that could be done at lower cost in higher-volume facilities. The main distinction here is time-sensitive emergencies vs. ‘shoppable’ services,” she said.

A New Lease on Life?

Seven of the 10 states — Nebraska, North Dakota, Tennessee, Kansas, Nevada, South Carolina, and Washington — where rural hospital service cuts are on the table say they’ll help pay for hospitals to convert to Rural Emergency Hospitals. The recently created federal designation requires hospitals to halt inpatient services and offers enhanced payments to help them maintain emergency and outpatient care.

At least 15 additional states wrote that they’ll use the federal funding to right-size, evaluate, or adjust services — which could mean adding or taking away services, or transitioning them to a telehealth or outpatient setting.

Brock Slabach, chief operations officer of the National Rural Health Association, said, “There’s a proper concern from rural hospital administrators that this funding is not going to where it was intended.”

He said cutting services that lose money could backfire in the long run. For example, he said, halting labor and delivery care might drive more people out of small towns, further reducing hospitals’ patient numbers and revenue.

The type of hospital services that states will assess matters, said Tony Shih, a senior adviser at the Commonwealth Fund, a nonprofit focused on making health care more equitable.

“If the end result is that high-margin services are taken away from local hospitals with nothing given back in return, it can be financially harmful,” he said.

Shih noted that states’ plans to add more outpatient care could prove beneficial for patients. It’ll take time to know which states help stabilize rural hospitals, he said.

Rural hospital leaders say they know which changes would keep their facilities open and that states shouldn’t suggest or mandate service cuts and other changes on their behalf.

Josh Hannes, who oversees rural health policy at the Colorado Hospital Association, said “top-down” directives won’t work.

He said the association’s members believe they can find efficiencies and are eager to collaborate. But “a state agency shouldn’t be making those determinations,” he said.

Hannes said members are worried Colorado’s plan to classify rural health facilities as a “hub, spoke, or telehealth node” will compel service reductions. The classification will help determine “which services are sustainable locally and which are best provided regionally or through telehealth,” .

Spokespeople for the Colorado and Oklahoma health departments said no facility will be forced to end services. But Oklahoma spokesperson Rachel Klein said some facilities might choose to do so as part of a broader effort to make sure they’re meeting community needs while remaining financially stable.

“A hospital might shift certain services to a nearby regional provider with higher patient volume and specialized staff while expanding other local services,” such as primary, outpatient, or community-based care, she said.

Wiens and Darrell Messersmith, CEO of Dahl Memorial Hospital in the southeastern Montana town of Ekalaka, said they worry the only way hospitals will get their share of funding is to cut services or become Rural Emergency Hospitals that don’t offer inpatient services.

“I would hate to see things shift toward a pack-and-ship facility,” Messersmith said. “Right now, we function quite well as an inpatient facility.”

Not all Montana health leaders are worried.

Ed Buttrey, president and CEO of the Montana Hospital Association, said he thinks his state’s plan could help rural hospitals become financially sustainable and survive Medicaid cuts. Buttrey is also a Republican state lawmaker.

Chauvet, the Big Sandy rancher, said his perspective on whether remote towns like his should have a hospital is forever changed because of his accident.

“I always would say, ‘Oh, they’re nice to have,’ but now I look at the hospital and say, ‘That’s essential to our community,’” he said.

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The legislation would prohibit state and local governments from requiring crisis pregnancy centers to perform abortions, provide referrals for abortion services, or inform patients about such services or contraception options. It also would allow crisis pregnancy centers to sue the violating government entity.

Wyoming lawmakers of the Center Autonomy and Rights of Expression Act, or , on March 4. Other versions have advanced in and this year. One was in 2025. The CARE Act is “model legislation” created by the , an anti-abortion, conservative Christian legal advocacy group.

A similar proposal, the , was introduced in Congress last year but hasn’t moved out of the House Energy and Commerce Committee.

The Wyoming bill says that pregnancy centers, many of which are affiliated with religious organizations, need legal protection after facing “unprecedented attacks” following the Supreme Court’s overturning of Roe v. Wade. It says that several state legislatures have introduced bills that . Opponents of these centers say they falsely present themselves to consumers as medical clinics, though they are not subject to state and federal laws that protect patients in medical facilities.

“Across the country, government officials are increasingly, increasingly targeting pregnancy care centers,” Valerie Berry, executive director of the in Cheyenne, said at a February legislative hearing on the Wyoming bill. “This legislation is not about creating division. It’s about protecting constitutional freedoms, freedom of speech, and freedom of conscience.”

Wyoming state , a Republican, expressed concern at the hearing about granting protections to pregnancy centers that other private businesses do not have.

“They have protections in place,” he said. “My issue with this is giving extra special protections.”

In 2022, Wellspring Health Access, the only clinic in Wyoming that provides abortions, in an arson attack.

“We are the ones providing the accurate information on reproductive health care, and we suffer the consequences for that,” Julie Burkhart, the president and founder of Wellspring Health Access, told Â鶹ŮÓÅ Health News.

, a professor at the University of California-Davis School of Law, said the proposed legislation would insulate crisis pregnancy centers from having to meet the standards that medical organizations face. It would blur the line between advocacy and medical practice, she said. And such legislation provides Republicans with a potentially useful campaign message ahead of midterm elections.

“The GOP needs a messaging strategy as for how it cares about women even if it bans abortion and even if it doesn’t want to commit state resources to helping people before and after pregnancy,” Ziegler said. “The strategy is to outsource that to pregnancy counseling centers, which of course increases the incentive to protect them.”

Model Legislation

The Alliance Defending Freedom is the same group that , the 1973 court ruling that protected the right to abortion nationwide. The group drafted model legislation to establish a 15-week abortion ban that was the basis of a 2018 Mississippi law. That led to the Dobbs v. Jackson Women’s Health Organization Supreme Court case that overturned Roe.

The alliance said its attorneys were unavailable to comment on the organization’s strategy for the CARE Act. In for the bill, the group said federal, state, and local efforts are targeting pregnancy care centers in a “clear attempt to undermine and impede” their work and shut them down.

In recent years, have been targeted with vandalism and threats.

But the attacks the model legislation primarily aims to address are the legal and regulatory efforts by some states seeking more oversight of the crisis pregnancy centers, including a California law requiring centers to clearly inform patients about their services. That law was overturned when the Supreme Court ruled in favor of crisis pregnancy centers’ argument that it violated their First Amendment rights.

The Supreme Court is that will decide whether states can subpoena the organizations for donor and internal information.

It’s unlikely that crisis pregnancy centers would face such regulatory measures in the conservative states where the legislation is under consideration. One Wyoming lawmaker acknowledged that in the February committee hearing.

Differing Services

During that hearing, state , a Republican who heads the committee sponsoring the bill, presented the measure as “so important, especially with our maternity desert,” referring to a lack of access to maternity health care services.

Some crisis pregnancy centers may have a few licensed clinicians, but many do not. Many offer free resources, such as diapers, baby clothing, and other items, sometimes in exchange for participation in counseling or parenting classes.

Planned Parenthood clinics, by contrast, provide a range of health services, such as testing and treatment for sexually transmitted infections, primary care, and screenings for cervical cancer. They also are regulated as medically licensed organizations.

Since Roe was overturned, the abortion rights movement has faced significant challenges. Congressional Republicans’ One Big Beautiful Bill Act, which President Donald Trump signed into law last summer, to abortion providers. The move contributed to Planned Parenthood closing last year.

As of 2024, operated nationwide, according to a map created by researchers at the University of Georgia, compared with providing abortions at the end of 2025.

a research organization affiliated with the anti-abortion nonprofit SBA Pro-Life America, has suggested that pregnancy centers could help fill the gap left by the Planned Parenthood closures.

Ziegler said that would leave patients vulnerable to medical risks.

Centers’ Growing Power

Previous efforts in , Colorado, and Vermont to regulate crisis pregnancy centers arose from concerns over allegations of and questions about .

In 2024, in five states to investigate whether centers were misleading patients into believing that their personal information was protected under the Health Insurance Portability and Accountability Act, known as HIPAA, and to find out how the centers were using patients’ information.

Courts, including the Supreme Court, have regularly that argue the attempts at regulation are violations of their First Amendment rights to free speech and religious expression.

Crisis pregnancy centers also have seen a flood of funding since Roe was overturned.

At least , including crisis pregnancy centers, according to the Lozier Institute.

Six states distribute a portion of their federal Temporary Assistance for Needy Families funding — cash payments meant for low-income families with children — to crisis pregnancy centers. Texas, Florida, Tennessee, and Oklahoma have provided tens of millions of dollars for the organizations.

One analysis found that crisis pregnancy centers also received from 2017 to 2023, including from the 2020 relief package signed into law during Trump’s first term amid the covid pandemic.

Despite the challenges clinics that provide abortions face, Burkhart, the head of the Wellspring facility in Wyoming, said it’s important to continue offering access to people who need it. She’s helped open clinics in rural parts of other conservative states and said those clinics continue to see people walking through their doors.

“That proves to me, regardless of your religion, political party, there are times in people’s lives that people need access to qualified reproductive health care,” she said. “That includes abortion.”

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Â鶹ŮÓÅ Health News southern correspondent Sam Whitehead discussed Medicaid work requirements on WUGA’s The Georgia Health Report on March 6.

• Read Whitehead’s “New Medicaid Work Rules Likely To Hit Middle-Aged Adults Hard,” co-reported with Samantha Liss.

Â鶹ŮÓÅ Health News Colorado correspondent Rae Ellen Bichell discussed wage garnishment legislation on KUNC’s In the NoCo on March 5.

• Read Bichell’s “State Lawmakers Seek Restraints on Wage Garnishment for Medical Debt.”

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Within a few days, Reynolds became so desperate that she and her husband had to physically restrain Jonah, dumping pain medication down his throat as he screamed in pain.

“It broke our hearts,” said Reynolds, who lived in Georgetown, Kentucky, at the time. “And I remember just thinking that it shouldn’t have to come to that.”

Reynolds couldn’t find a dentist with an opening who could treat Jonah, who is autistic and often resists dental exams due to hypersensitivity and anxiety. Over the course of five days, Reynolds took Jonah twice to a nearby emergency room as he struggled with persistent pain and a fever due to a likely infected tooth with an exposed nerve. The ER had no dentists; both times, the family was sent home with only pain medication and an ice pack.

Across the nation, more children are entering ERs for preventable tooth problems. Dentists, hygienists, and researchers attributed that trend to a shortage of pediatric dental care professionals in and worsening oral hygiene since the covid-19 pandemic. Tens of thousands of kids end up in the hospital for dental emergencies each year, according to Melissa Burroughs, senior director of policy and advocacy at the national health nonprofit CareQuest Institute for Oral Health.

ER visits for tooth problems unrelated to physical injuries for children under 15 years old from 2019 to 2022, according to a report released late last year by CareQuest. And local data reflects that national trend: At Children’s Hospital Colorado in the Denver area, nontraumatic dental cases, such as cavities or gum infections, in its ER increased 175% from 2010 to 2025, according to hospital spokesperson Sarah Bonar. In Kentucky, where Jonah lives, children’s visits to the ER for dental problems rose 72% from 2020 to 2024, according to the state.

Policy changes under the Trump administration are poised to worsen the trend. President Donald Trump’s 2025 federal budget reconciliation law, known as the One Big Beautiful Bill Act, called for billions in cuts from Medicaid, which may force states to limit or drop dental coverage from the public insurance program for those with low incomes or disabilities. New eligibility requirements for Medicaid in some states could affect kids’ access to dental care, even though children are guaranteed dental coverage under the program. Research shows that when parents lose Medicaid, even kids with coverage are more likely to have and to go to a dentist.

The Trump administration has also promoted skepticism about fluoride. show that fluoride in drinking water and topical fluoride treatments dramatically reduce tooth decay and prevent cavities. In recent months, the Food and Drug Administration against the use of fluoride supplements and the Environmental Protection Agency of “potential health risks of fluoride in drinking water.” Health and Human Services Secretary Robert F. Kennedy Jr. has called fluoride a “” and “.” A 2025 study in JAMA Pediatrics linked high levels of fluoride with lower IQ in children — but only at concentrations the recommended level in public drinking water.

, a pediatric dentist at the University of Washington who studies fluoride hesitancy, worries that these anti-fluoride stances will further erode trust in fluoride treatment. Since the start of 2026, lawmakers in at least 15 states have introduced bills prohibiting or limiting fluoride in public drinking water. Utah and Florida in 2025 became the first states to enact fluoride bans.

“Will that have an effect on cavity rates?” Chi asked. “Absolutely.”

Severe Dental Cases Rise

Pediatric dentists Katherine Chin and Chaitanya Puranik said they are treating more patients like Jonah at Children’s Hospital Colorado. More severe cases have become more common, too. Puranik said he used to typically see patients with only one cavity, but now his patients are often coming in with tooth decay throughout their mouth.

During the pandemic, many dental offices , and studies show children also increased , a major risk factor for cavities. Severe cavities that lead to tooth extraction can affect , sometimes causing long-term problems with or .

Millions of people live in in the U.S., with scant dentists within driving distance. On top of that, only treat Medicaid patients, due to low reimbursement rates, which are on average of their typical dental charges, according to the American Dental Association.

Children with intellectual or developmental disabilities may especially struggle to access quality dental care. Few general dentists have sufficient pediatric training to care for kids with disabilities such as Jonah, who are easily overwhelmed or need to be sedated for an exam, , a health information nonprofit that includes Â鶹ŮÓÅ Health News. Over have special health care needs, and those children are to have unmet dental needs. Their parents are also to finding a dentist.

When he was younger, Jonah would not let his parents brush his teeth, which led to cavities in his baby teeth, his mother said. After Jonah’s first visit to the ER, Reynolds found a general dentist with an opening. But unlike a trained pediatric dentist, she said, the dentist did not know how to examine Jonah in a way he could tolerate and wasn’t prepared to provide sedation. Jonah left without treatment and was soon back in the ER when his fever returned.

ERs Rarely Provide Solutions

, a pediatrician in Washington County, Maine, said he is fielding “the most horrifying cavities” at Down East Community Hospital.

ERs are often ill-equipped to treat dental concerns, Weitz said. Similar to the ER Jonah went to in Kentucky, Down East has no dentists on staff. Weitz often finds himself prescribing antibiotics as a temporary measure.

“But a month later, they’re back again because it’s flaring up again,” Weitz said.

As a potential solution, states such as Maine and Alaska are proposing to use money from the $50 billion to develop the oral health workforce or to create specialized dental care centers, which can better serve children with special health care needs on short notice. But those initiatives won’t address the loss of coverage anticipated from Medicaid cuts. California last year in state grants to develop or expand over 120 dental facilities to serve patients with special health care needs.

Jonah’s dental emergency cost Reynolds a week of work from her job as a dog groomer and Jonah three days of third grade, plus hundreds of dollars in out-of-pocket costs.

Eventually, Reynolds found an oral surgeon who extracted the tooth. But even that went poorly, she said. When Jonah became upset over a needle stick, the surgeon threatened to hold him down, Reynolds said. She said the surgeon left quickly after the procedure and never gave her a clear diagnosis of what caused Jonah’s pain. The procedure did resolve his toothache, but Reynolds said more professionals should know how to handle cases like Jonah’s, with sensitivity to the families. Four years later, forcing Jonah to take his pain meds still lives fresh in her memory.

“That will never leave my mind,” Reynolds said.

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After Health and Human Services Secretary Robert F. Kennedy Jr. fired Centers for Disease Control and Prevention Director Susan Monarez for refusing what her lawyers called “,” Newsom to help modernize California’s public health system. He also gave a job to Debra Houry, the agency’s former chief science and medical officer, who had resigned in protest hours after Monarez’s firing.

Newsom also teamed up with fellow Democratic governors Tina Kotek of Oregon, Bob Ferguson of Washington, and Josh Green of Hawaii to form the , a regional public health agency, whose guidance would “uphold scientific integrity in public health as Trump destroys” the CDC’s credibility. Newsom argued establishing the independent alliance was vital as Kennedy leads the Trump administration’s rollback of national vaccine recommendations.

More recently, California became the a global outbreak response network coordinated by the World Health Organization, followed by Illinois and New York. Colorado and Wisconsin signaled they plan to join. They did so after President Donald Trump officially from the agency on the grounds that it had “strayed from its core mission and has acted contrary to the U.S. interests in protecting the U.S. public on multiple occasions.” Newsom said joining the WHO-led consortium would enable California to respond faster to communicable disease outbreaks and other public health threats.

Although other Democratic governors and public health leaders have openly criticized the federal government, few have been as outspoken as Newsom, who is considering a run for president in 2028 and is in his second and final term as governor. Members of the scientific community have praised his effort to build a public health bulwark against the Trump administration’s slashing of funding and scaling back of vaccine recommendations.

What Newsom is doing “is a great idea,” said Paul Offit, an outspoken critic of Kennedy and a vaccine expert who formerly served on the Food and Drug Administration’s vaccine advisory committee but was removed under Trump in 2025.

“Public health has been turned on its head,” Offit said. “We have an anti-vaccine activist and science denialist as the head of U.S. Health and Human Services. It’s dangerous.”

The White House did not respond to questions about Newsom’s stance and HHS declined requests to interview Kennedy. Instead, federal health officials criticized Democrats broadly, arguing that blue states are participating in fraud and mismanagement of federal funds in public health programs.

HHS spokesperson Emily Hilliard said the administration is going after “Democrat-run states that pushed unscientific lockdowns, toddler mask mandates, and draconian vaccine passports during the covid era.” She said those moves have “completely eroded the American people’s trust in public health agencies.”

Public Health Guided by Science

Since Trump returned to office, Newsom has criticized the president and his administration for engineering policies that he sees as an affront to public health and safety, labeling federal leaders as “extremists” trying to “weaponize the CDC and spread misinformation.” He has for erroneously linking vaccines to autism, the administration is endangering the lives of infants and young children in scaling back childhood vaccine recommendations. And he argued that the White House is unleashing “chaos” on America’s public health system in backing out of the WHO.

The governor declined an interview request. Newsom spokesperson Marissa Saldivar said it’s a priority of the governor “to protect public health and provide communities with guidance rooted in science and evidence, not politics and conspiracies.”

The Trump administration’s moves have triggered financial uncertainty that local officials said has reduced morale within public health departments and left states unprepared for disease outbreaks and . The White House last year proposed cutting HHS spending , including . Congress largely rejected those cuts last month, although funding for programs focusing on social drivers of health, such as access to food, housing, and education, .

The Trump administration announced that it would claw back in public health funds from California, Colorado, Illinois, and Minnesota, arguing that the Democratic-led states were funding “woke” initiatives that didn’t reflect White House priorities. Within days, and a judge the cut.

“They keep suddenly canceling grants and then it gets overturned in court,” said Kat DeBurgh, executive director of the Health Officers Association of California. “A lot of the damage is already done because counties already stopped doing the work.”

Federal funding has accounted for of state and local health department budgets nationwide, with money going toward fighting HIV and other sexually transmitted infections, preventing chronic diseases, and boosting public health preparedness and communicable disease response, according to a 2025 analysis by Â鶹ŮÓÅ, a health information nonprofit that includes Â鶹ŮÓÅ Health News.

Federal funds account for $2.4 billion of California’s $5.3 billion public health budget, making it difficult for Newsom and state lawmakers to backfill potential cuts. That money helps fund state operations and is vital for local health departments.

Funding Cuts Hurt All

Los Angeles County public health director Barbara Ferrer said if the federal government is allowed to cut that $600 million, the county of nearly 10 million residents would lose an estimated $84 million over the next two years, in addition to other grants for prevention of HIV and other sexually transmitted infections. Ferrer said the county depends on nearly $1 billion in federal funding annually to track and prevent communicable diseases and combat chronic health conditions, including diabetes and high blood pressure. Already, the the closure of that provided vaccinations and disease testing, largely because of funding losses tied to federal grant cuts.

“It’s an ill-informed strategy,” Ferrer said. “Public health doesn’t care whether your political affiliation is Republican or Democrat. It doesn’t care about your immigration status or sexual orientation. Public health has to be available for everyone.”

A single case of measles requires public health workers to track down 200 potential contacts, Ferrer said.

The U.S. but is close to losing that status as a result of vaccine skepticism and misinformation spread by vaccine critics. The U.S. had , the most since 1991, with 93% in people who were unvaccinated or whose vaccination status was unknown. This year, the highly contagious disease has been reported at , , and .

Public health officials hope the West Coast Health Alliance can help counteract Trump by building trust through evidence-based public health guidance.

“What we’re seeing from the federal government is partisan politics at its worst and retaliation for policy differences, and it puts at extraordinary risk the health and well-being of the American people,” said Georges Benjamin, executive director of the American Public Health Association, a coalition of public health professionals.

Robust Vaccine Schedule

Erica Pan, California’s top public health officer and director of the state Department of Public Health, said the West Coast Health Alliance is defending science by recommending a vaccine schedule than the federal government. California is part of a coalition over its decision to rescind recommendations for seven childhood vaccines, including for hepatitis A, hepatitis B, influenza, and covid-19.

Pan expressed deep concern about the state of public health, particularly the uptick in measles. “We’re sliding backwards,” Pan said of immunizations.

Sarah Kemble, Hawaii’s state epidemiologist, said Hawaii joined the alliance after hearing from pro-vaccine residents who wanted assurance that they would have access to vaccines.

“We were getting a lot of questions and anxiety from people who did understand science-based recommendations but were wondering, ‘Am I still going to be able to go get my shot?’” Kemble said.

Other states led mostly by Democrats have also formed alliances, with Pennsylvania, New York, New Jersey, Massachusetts, and several other East Coast states banding together to create the .

HHS’ Hilliard said that even as Democratic governors establish vaccine advisory coalitions, the federal “remains the scientific body guiding immunization recommendations in this country, and HHS will ensure policy is based on rigorous evidence and gold standard science, not the failed politics of the pandemic.”

Influencing Red States

Newsom, for his part, has approved a recurring annual infusion of nearly $300 million to support the state Department of Public Health, as well as the 61 local public health agencies across California, and last year authorizing the state to issue its own immunization guidance. It requires health insurers in California to provide patient coverage for vaccinations the state recommends even if the federal government doesn’t.

Jeffrey Singer, a doctor and senior fellow at the libertarian Cato Institute, said decentralization can be beneficial. That’s because local media campaigns that reflect different political ideologies and community priorities may have a better chance of influencing the public.

A Â鶹ŮÓÅ analysis found some red states are joining blue states in decoupling their vaccine recommendations from the federal government’s. Singer said some doctors in his home state of Arizona are looking to more liberal California for vaccine recommendations.

“Science is never settled, and there are a lot of areas of this country where there are differences of opinion,” Singer said. “This can help us challenge our assumptions and learn.”

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Sam Walker, 35, has severe autism and other disabilities. He is deaf and cannot speak. Sometimes when he’s frustrated, he hits himself or others.

Medicaid provides about $8,500 a month for health workers who visit his apartment in the basement of his parents’ home. The staffers help him with everyday tasks, including dressing, bathing, and eating. They also take Walker on outings, such as dining at restaurants, volunteering at Goodwill, and exercising at a recreation center or on park trails. They stick to a strict routine, which soothes him.

His parents say that without the in-home services, their son would need to move to a specialized residential facility in another state. Sending him away would break their hearts and cost taxpayers much more money. They strive to keep him home because they know change makes him anxious.

“The last thing I want is to put him into some kind of care facility, where he’ll just get kicked out,” said his mother, Leisa. The Iowa Department of Health and Human Services did not respond to Â鶹ŮÓÅ Health News’ questions about the Walkers’ case.

Federal Cuts Raise Pressure

Patient advocates say state administrators in Iowa appear to be reining in Medicaid spending by cutting what are known as home and community-based services for people with disabilities, and they’ve heard of multiple families facing battles like the Walkers’.

Disability rights advocates expect the pressure to intensify as states respond to reductions in federal Medicaid funding called for under the Trump administration’s signature tax and spending law, which passed last year.

June Klein-Bacon, CEO of the Brain Injury Association of Iowa, said the cuts and proposed rule changes appear to be part of a quiet attempt to save money in response to the state’s budget deficit and expected reductions in federal Medicaid funding.

Medicaid, jointly financed by the federal and state governments, covers people with low incomes or disabilities. Walker is one of served by “Medicaid waiver” programs, which pay for care that allows people with disabilities or who are at least 65 to live at home.

Unlike most parts of Medicaid, waiver programs are optional for states. Idaho’s governor noted that fact in January, when he suggested legislators consider cutting them. Disability rights groups fear other states will do the same. Leaders in , , and have considered such cuts this year.

Leisa Walker has heard Trump administration officials claim the national Medicaid cuts are intended to reduce waste, fraud, and abuse. That’s not how it will play out, she said. “These are real people, real families, and this causes real suffering when you do this to people,” she said. “It’s a very scary time.”

a private insurance company that manages Sam Walker’s Medicaid benefits, intends to cut his in-home care coverage by about $3,200 per month, his mother said. Company leaders told a judge they are following state officials’ direction, but they did not dispute Leisa Walker’s math.

Walker has been on the waiver program for three decades. It covers assistance from workers known as “direct service providers” — one of whom has been with him for 25 years. His parents receive no pay for the hours they spend caring for him when the aides aren’t working.

On a February morning, Leisa and Kent Walker drove an hour and a half to Des Moines for an appeal hearing. An administrative law judge sat behind a wooden desk in a conference room as the Walkers and their lawyer faced off against three representatives from Iowa Total Care, a subsidiary of the national insurer Centene Corp.

Leisa testified that her son is 6 feet tall and weighs 230 pounds. Although he knows some sign language, he has trouble communicating, she said. When he becomes frustrated or his routine is interrupted, he sometimes wails and hits himself or other people. “It’s devastating to watch,” she testified.

He’s not a bad person, she said. “He doesn’t understand how strong he is.”

She said her family would try to keep his main caregiver employed under the planned Medicaid reduction but would have to drop others who cover nights and weekends. She said no residential facility near their southern Iowa home could address her son’s complicated needs. She said a case manager told her that a Florida facility might be the closest one that could safely handle him.

Leisa Walker testified that the state’s Medicaid program would pay about $22,000 per month to put him in an institution, more than double what the program spends on his home care.

Sam Walker’s longtime psychiatrist, Christopher Okiishi, testified that Walker’s family and their support staff spent years developing a “fragile” but stable existence for him.

Lori Palm, a senior manager for Iowa Total Care, testified that Sam Walker gets about 16 hours of daily assistance financed by Medicaid. Palm said much of that time amounts to “supervision.” She said state officials recently advised her company that the program should pay mainly for “skill-building” time, not supervision.

The Walkers showed the judge a 2018 document in which a previous Iowa Medicaid director stipulated that supervision of people with disabilities is an allowable service for workers paid under the program.

Judge Rachel Morgan asked the Iowa Total Care representatives if the recent policy change was made in writing by the state Department of Health and Human Services. They said it was not and that they couldn’t specify who at the department had given them the new guidance.

The judge suggested during the hearing that for someone like Sam Walker, learning to regulate emotions could be an important form of skill-building. Three days later, the judge ruled in the Walkers’ favor, writing that the insurer’s attempt to cut care hours was improper. The insurer appealed the decision to the director of the Iowa Department of Health Human Services, who could overrule it. The dispute could eventually wind up in district court.

Iowa Total Care and the state Department of Health and Human Services did not respond to questions about the reports that many other Iowans with disabilities face reductions in care hours covered by Medicaid. Department spokesperson Danielle Sample said in an email that the agency supports home and community-based services, which, she noted, help “states save money by avoiding expensive long-term facility care.”

Spokespeople for the federal Department of Health and Human Services, which oversees Medicaid nationally, did not respond to a request for comment on the issue.

Medicaid waiver programs started in the 1980s, after President Ronald Reagan heard about an Iowa girl with a disability who was forced to live in a hospital for months because Medicaid wouldn’t pay for home care. The Republican president thought it was outrageous that the girl, had to live that way, even though home care would have been cheaper.

Members of Congress approved allowing states to use their Medicaid programs to pay for in-home care. But they made the change optional, to offer states flexibility and encourage innovation.

Designating such spending as optional “waiver programs” also made the change more politically palatable, said Kim Musheno, senior director of Medicaid policy for , which represents people with intellectual and developmental disabilities.

Prospects were much different for babies born with serious disabilities before the change, Musheno said. “Doctors instructed families to forget they existed, and to put them in an institution.”

Waivers Have Been Cut Before

All states have Medicaid waiver programs, but benefits and the number of people covered vary significantly. Applicants often wait months or years to get into the programs because of limited funding. More than 600,000 Americans were on waiting lists or “interest lists” for waiver services in 2025, , a health information nonprofit that includes Â鶹ŮÓÅ Health News.

Disability rights advocates and care providers have fought for decades to maintain funding for the programs, but a national leader said the threat feels especially severe now.

“When Medicaid is cut, people with disabilities are at the center of the impact,” said Barbara Merrill, CEO of the American Network of Community Outcomes and Resources, which represents agencies that care for people with intellectual disabilities or autism.

That’s what happened after Congress reduced Medicaid funding in 2011, according to a recent paper published by .

States could again rein in waiver programs by limiting enrollment, reducing covered services, or cutting pay for caregivers, who already are in short supply.

However, states that try to cut the in-home care programs could face legal challenges, Musheno said. The U.S. Supreme Court declared in 1999 that people with disabilities have a right to live outside of institutions if possible. The decision, in the case of , has been cited in lawsuits against states that fail to provide care options apart from nursing homes and similar facilities.

Several Iowans who belong to a Facebook group for Medicaid participants have posted in recent weeks that their families were notified of impending cuts in coverage of home care services for people with disabilities.

Sam Walker’s main caregiver, Andy Koettel, has worked with him since Walker was in fourth grade. Koettel, who works full-time, knows how to keep Walker calm in most situations and soothe him during a blowup. Their relationship took years to build, and it is a key reason Walker can continue to live at home with his parents, Koettel said.

“If I was not there, it would be incredibly difficult for all of them,” he said.

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But plans to spend those nine-digit awards aren’t all warmly received.

At least one group of Republican state lawmakers appears to have scuttled an initiative preapproved by federal officials. And at least one hospital association persuaded its state health leaders to alter who greenlights spending. Other critics are taking a more cautious approach.

That’s because the Centers for Medicare & Medicaid Services, which manages the five-year Rural Health Transformation Program, says states could lose money if they make major changes to the plans approved in their applications. Changes could also delay states’ ability to get projects rolling in time to show the agency that they’re meeting progress deadlines.

“During the application period, states were advised to only propose initiatives and state policy actions that the state deemed feasible,” said CMS spokesperson Catherine Howden, who noted that the agency will work with states case by case.

The recent pushback reflects “tension” over state plans — which were approved by the federal government — from state lawmakers and health leaders who want more input amid tight deadlines, said Carrie Cochran-McClain, chief policy officer of the National Rural Health Association, the largest organization representing rural hospitals and clinics.

Cochran-McClain said many states must pass a bill to allow federal dollars to be spent and added that because the program rolled out so quickly “there’s important work that still needs to be done in some states between the legislatures and the governors.”

State lawmakers want to have a say, she said, in “how the funding is being allocated — how the implementation will go.”

Congressional Republicans created the program as a last-minute sweetener to include in their One Big Beautiful Bill Act, signed into law last summer. The funding was intended to offset concerns about the anticipated in rural communities from the law, which is expected to slash Medicaid spending by nearly $1 trillion over a decade.

CMS officials announced first-year funding — ranging from $147 million for New Jersey to $281 million for Texas — on Dec. 29, after scoring applications. Federal officials will begin evaluating progress in late summer and announce 2027 allocations at the end of October.

A chorus of critics say the program won’t make up for harm caused by Medicaid cuts.

The program is “a complete sham,” Sen. Ron Wyden (D-Ore.) said at a rural policy conference in February.

Medicaid, a joint federal-state program for low-income and disabled Americans, serves nearly , and many rural hospitals depend on it to stay afloat.

But the rural health program tilts toward seeding innovative projects and technologies, not shoring up rural hospital finances. States can use only up to 15% of their funding to pay providers for patient care.

That hasn’t stopped some federal officials and lawmakers from framing the program as a rural hospital rescue.

For example, the White House , “President Trump secured $50 billion in funding for rural hospitals.”

Now that applications have been approved, some state Republican lawmakers — who are than Democrats are — and hospital associations are upset that the political rhetoric doesn’t match what they see.

They’re also lobbing criticisms at specific aspects of their states’ plans, including the proposed projects, what’s not included, and the spending approval process.

In Wyoming, lawmakers didn’t just criticize an initiative from their state’s application. They moved to kill it.

State Rep. John Bear, a Republican, said he and other lawmakers declined to fund “BearCare,” a proposed state-sponsored health insurance plan that patients could use only after medical emergencies. But they did approve other aspects of the rural health program.

The Wyoming Department of Health won’t “proceed with BearCare without express legislative authority to do so,” said spokesperson Lindsay Mills.

While Wyoming lawmakers removed an initiative from their state’s rural health plan, a group in Ohio wants to add something.

Ohio Rep. Kellie Deeter and other Republican lawmakers to use the maximum allowed funding for provider payments — 15% — to support 13 independent, rural hospitals.

“We understand that the rural transformation fund is not designed to be given directly to prop up hospitals,” Deeter said. “We just want to capitalize on the mechanism of the fund that can be utilized for that purpose.”

Those hospitals “operate with very, very narrow margins, and it’s just difficult and, frankly, unsustainable,” she added.

Ken Gordon, a press secretary responding for the governor’s office and the state health department, said, “It’s still very early in this process, and many details are being worked out.”

State lawmakers around the country are also trying to ensure the federal program’s dollars benefit rural areas.

In North Dakota, Rep. Bill Tveit, a Republican who lives in a town with about 2,000 residents, that would have required the state to reserve its funding for programs located more than 35 miles from urban areas and small cities.

During a hearing, lawmakers appeared sympathetic to Tveit’s concerns but quickly shot down his idea.

State Sen. Brad Bekkedahl said the North Dakota health department already committed to prioritizing funding for the most pressing rural health needs. He also said he’s concerned any significant changes could cause the state to lose funding because CMS already reviewed and approved the plan.

Meanwhile, Republican lawmakers in Michigan and North Carolina have criticized their states’ definitions of “partially rural” or “rural,” saying that counties that include urban population centers could take money from lower-density counties, according to and .

Lawmakers aren’t the only ones speaking out.

The Colorado Hospital Association to state lawmakers denouncing how the state created its plan and two of its proposed initiatives.

“Not only were Colorado’s rural hospitals’ recommendations disregarded,” president and CEO Jeff Tieman wrote, but the plan includes ideas “they actively oppose and believe will harm the communities they serve.”

The department responded to one of the association’s concerns by adding rural health leaders to the .

Meanwhile, and Nebraska, some health groups are upset that their states’ plans lack specific funding streams for rural hospitals.

Lauren LaPine-Ray, who oversees rural health policy at the Michigan Health & Hospital Association, predicted the state’s rural hospitals will compete with other organizations, such as academic centers and health clinics, for funding. She said about 65% of the group’s rural members have never applied for a state grant before.

“The rural hospitals, the ones that really need the funding the most, will not be well equipped to apply for and pull down these dollars,” LaPine-Ray said.

Jed Hansen, executive director of the Nebraska Rural Health Association, said the federal funding won’t go to “rural hospitals, rural clinics, and rural providers in a meaningful way.”

“Rural Health Transformation will not save a single hospital in our state,” he said. “I don’t think it will save a hospital nationally.”

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Jamie Estrada of Albuquerque, New Mexico, twice received injections of lidocaine in his upper spine to test if a permanent nerve ablation would treat his chronic neck pain. His pain vanished — until the numbing agent wore off about six hours later. The real zinger: His insurer was billed $28,000 for each 10-minute procedure.

Mark McCullick of Longmont, Colorado, was sent for a whole-body PET scan to find out whether his prostate cancer was back. The two-hour scan showed no evidence of cancer, but the $77,000 bill sent to the company that administered his insurance alarmed him.

Medical inflation has general inflation for years, with bills for many brief, routine procedures reaching tens of thousands of dollars.

These cases highlight the questions that haunt the American health system and the patients caught in its grip: What is a reasonable price for any health care visit or procedure, and how is it determined? How hard do insurers, the purported stewards of the patient’s hard-earned health dollars, fight to lower charges, and how closely do they scrutinize bills for accuracy?

Smith, Estrada, and McCullick’s cases are all “chargemaster” bills, calculated from the master price list that health providers place on services. Patients who have insurance don’t generally pay them. But they matter because they are often the starting point for the negotiated price the insurer agrees is reasonable to pay for the services. Patients are typically responsible for 10% to 20% of the negotiated price, their coinsurance — and when prices are this high, that can be a big number. What’s more, those negotiated rates are difficult for patients to access (until they get the bill) and seemingly arbitrary.

Also, because health insurers can offset high outlays one year by raising premiums and deductibles the next, they have little incentive to bargain hard for good deals for the patients they cover. So patients all pay unknowingly, indirectly.

In the cases of Smith and Estrada, their insurers paid the majority without questions. Penn State’s Hershey Medical Center, which treated Smith, received $61,000, or 62% of what it charged. New Mexico Surgery Center Orthopaedics, which treated Estrada, received $46,000, or 82%.

McCullick’s insurer, on the other hand, said it would pay Intermountain Health just 28% of his $77,000 bill. Then came another curveball: The hospital, which said it had gotten preauthorization, discovered after the fact that his scan was not covered. So it billed McCullick the full chargemaster rate of $77,000 — or, it offered, he could pay the cash rate of $14,259.

In an emailed statement, Chris Bond, a spokesperson for AHIP, the leading trade group for health insurers, blamed hospitals for the trouble, saying that plans are “focused on making benefits and coverage as affordable as possible for their members,” and that: “As the largest single category per premium dollar spent, increases in the cost of hospital-based care have an outsized impact on premiums.”

In a health system in which prices can vary exponentially with little transparency, how can patients afford to get sick?

‘It Makes No Sense’

Americans as a top priority for government in 2026, according to an Associated Press-NORC poll, expressing particular concern about cost, access, and insurance coverage.

The first Trump administration required insurers and hospitals to publish files containing cash, gross, and negotiated prices for various items and services. These raw, machine-readable price lists — often hundreds of pages filled with medical billing codes — to patient-customers.

Five years later, they’ve been ingested, parsed, and enriched by academics and startups, shedding light on the often-shocking disparities in prices and how they’ve come to exist.

“When we look at the data, whether it’s from a chargemaster or what insurers paid, it’s all over the map — it makes no sense,” said Marcus Dorstel, senior vice president of operations at Turquoise Health, a price transparency startup with payers and providers as clients. “The variation is huge, even in a specific area.”

When researchers at the Johns Hopkins Bloomberg School of Public Health looked at the data, they discovered that the price different insurers pay for the same billed charges “can be three or more times different at the same hospital,” said Ge Bai, a professor of health care accounting who was among the researchers.

The prices insurers pay are determined by numerous factors, including what’s in their contracts with health systems. Some health plans, such as Smith’s, automatically pay a percentage of the hospital’s billed charges, incentivizing hospitals to increase their rates. Hershey Medical Center increased its prices for 11 common hospital billing codes by an average of about 30% from 2023 to 2025, Dan Snow, a data scientist at Turquoise Health, calculated for this article. But those prices were not much different than those of other hospitals in Pennsylvania.

In other cases, an insurer might agree to pay a health system a case rate — a standard rate for a type of care, say a colonoscopy or an inpatient stay for pneumonia.

But there’s a lucrative catch, called a “carve-out,” which refers to a particular benefit that’s negotiated and paid separately. If the hospital used expensive drugs or devices, for instance, they can be billed in addition to the bundled case rate, with no limits on hospital markups. That was the case with McCullick’s PET scan; about 80% of the charge was not for the scan, but for a new kind of drug injected before the scan to detect cancer.

Most often the final prices depend on the relative negotiating power of the insurer and the health system: Which side has enough market sway to walk away if the other doesn’t meet its demands?

Such factors “can explain the price variations and patterns that we see,” Dorstel said. “In some markets insurers are price-makers, and in others they are price-takers.”

For Insurers, Paying More Is Profitable

Insurers aren’t incentivized to lower prices, because high prices mean they “get a slice of a bigger pie,” Bai said.

By law, insurers must spend 80% or 85% of premiums on patient care. But when prices rise, they can pass on the increase to customers in the form of higher premium costs and still meet their legal obligation. So higher premiums mean less money for the patient and more profit for the insurer.

For each spinal injection Estrada received, his insurance company’s contracted rate was $23,237.50. Estrada’s coinsurance was $5,166.20. With a high-deductible plan, he was asked to pay all of that more than $5,000 bill.

When he called to challenge the big bill, he said, the surgery center’s administrator told him the charges were the result of a “legacy contract” with the insurer that is “advantageous” and “favorable” to the center.

New Mexico Surgery Center Orthopaedics’ charges are many times those of the hospital where the center’s doctors admit patients, for example; there, Estrada’s insurance company’s contracted rate for the same spinal injection is just $2,058.67. And compared with the roughly $20,000 the insurer paid for each of Estrada’s injections, other insurers pay the center about $700 for the same procedure, Snow found.

The surgery center is part of a national group that owns more than 535 surgical facilities, United Surgical Partners International, which in turn is owned by Tenet Healthcare, a for-profit health conglomerate. That kind of market dominance can lend companies the negotiating power to charge — and get paid — what they want, Bai said.

The surgery center, United Surgical Partners International, and Tenet Healthcare did not reply to multiple requests for comment from Â鶹ŮÓÅ Health News.

With charges prenegotiated, insurers have little incentive to scrutinize questionable bills. When Smith asked for an itemized bill for her surgery, she discovered that she had been billed for two surgeries: one for the ectopic pregnancy removal and another because the surgeon noticed signs of endometriosis and performed a biopsy. Both were billed at the contracted rate of $37,923.

She was livid at the charges, which to her seemed like double-dipping. “That was one surgery,” she said. “There was one incision.”

A Yale University-trained lawyer, Smith consulted the federal Centers for Medicare & Medicaid Services’ , which note the two billing codes used for her surgery generally can’t be “billed together for the same patient encounter” because one more or less is bundled with the other.

Smith said she reached out to the Penn State hospital, the insurer, and even the state attorney general without resolution. So she expects she will, reluctantly, have to pay the $5,250 coinsurance that the hospital and insurer say she owes.

In response to questions from Â鶹ŮÓÅ Health News, Scott Gilbert, a spokesperson for the health system, did not respond to the specifics of this case, but wrote: “Penn State Health recognizes that health care billing can be confusing and often overwhelming for patients. The process involves many factors, including the type of care provided, where it’s delivered and the details of a patient’s insurance coverage.”

A ‘Reasonable’ Price?

After a reporter sent multiple inquiries to Intermountain Health, McCullick said an agent asked him what would be “a reasonable amount to resolve the situation.”

Sara Quale, a spokesperson for Good Samaritan Hospital, the Intermountain affiliate where he got the PET scan, wrote: “We sincerely regret the frustration this situation has caused Mr. McCullick,” noting that “we have been in consistent contact with him and will continue to follow up as needed.”

McCullick said he wants to pay his fair share but is still trying to figure out what that is — certainly less than the different self-pay prices he’s been offered, which all top $10,000. “The fluid nature of these numbers is mind blowing,” he wrote in an email.

As for Estrada, he was so angry that he decided not to go ahead with the nerve ablation. While he was being prepped for the procedure, Estrada recalled, the physician said he had “heard he might sue” and chastised him for being a troublemaker. The hospital did not respond to a request for comment on the allegations, and Estrada said he had never threatened legal action.

Estrada got off the table and put his shirt back on. “I’m not going to let this person put a big needle into my back.”

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McLeod, who lives near Charleston, South Carolina, is still paying off chemotherapy bills that followed her 2017 diagnosis. She also now faces an onslaught of out-of-pocket costs for follow-up monitoring and care, including regular visits to a pulmonologist and allergist.

McLeod, 45, said she had already spent $2,500 in the first two months of the year and owes an additional $1,300 from a January colonoscopy. That’s on top of the $895 monthly premium for a health insurance plan that covers her family of six.

Those costs have led McLeod to ration her other care. Despite feeling intense chest pain since February, for example, she is putting off a CT scan and a visit to a heart specialist.

“You’re forced to pick and choose as to where your priorities really need to be,” said McLeod, director of strategic programs and partnerships at the Cancer Hope Network, a nonprofit that supports cancer patients. Even in that role, she struggles to navigate the financial aftermath of surviving the disease.

The cost of postcancer care often “keeps us hostage,” she said.

McLeod is one of nearly 19 million U.S. cancer survivors, many of whom continue to need prescriptions, doctor visits, and procedures to monitor their condition and manage posttreatment side effects. Of more than 1,200 cancer patients and survivors , about 47% said they had carried medical debt, with nearly half having owed more than $5,000, according to the American Cancer Society Cancer Action Network.

Yet health policy researchers and patient advocates said the experiences of cancer survivors reveal the limits of the Trump administration’s proposals to lower premiums, which may not help patients who accumulate large medical bills year after year. The proposals center on increasing the availability of high-deductible health plans, which have lower monthly payments but require patients to pay thousands of dollars out-of-pocket before coverage kicks in.

In addition, the administration has supported allowing insurers more leeway to sell plans that are not compliant with the Affordable Care Act. Such plans could bar people who have preexisting health conditions, like a cancer diagnosis, and exclude that ACA plans are required to cover.

The administration did not answer a request for comment on how its proposals would affect cancer survivors. But its supporters say, in general, people would have more flexibility to personalize coverage and more options for plans with lower monthly fees.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank, believes patients would have better control over spending, and the option to choose what kind of care gets covered, if health plans were exempted from the ACA’s regulations. A person could opt for a plan that includes cancer treatment but not maternity care, for example.

History proves insurance coverage is not that simple, especially for people with preexisting conditions, said Jennifer Hoque, an associate policy principal with the American Cancer Society Cancer Action Network. When health plans could “pick and choose” enrollees based on preexisting conditions prior to the ACA, people needing the costliest care often struggled to find coverage, she said.

“They’re not going to choose a cancer survivor,” Hoque said of health insurers.

That was the case for Veronika Panagiotou, who said private insurers refused her coverage back in September 2013 because she had a high body mass index. Two months later, as a 25-year-old uninsured graduate student, she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she recalled, “and sent me all the bills.”

In January 2014, Panagiotou was able to buy one of the first ACA plans that went into effect. It covered chemotherapy and immunotherapy treatment, imaging, medications, hospital stays, weekly blood draws, a blood transfusion, and emergency room visits.

Now Panagiotou, 37, is cancer-free and works as director of advocacy and programs at Cancer Nation, a nonprofit advocacy group. Even though she is covered through her employer, Panagiotou said treatment-related expenses weigh heavily on her life decisions.

“Every choice I make, I think about cancer,” she said.

Chris Bond, a spokesperson for AHIP, the main health insurance trade association, said its members are working to improve access to coverage. But that can be a challenge when doctors and drugmakers are hiking prices, he said. Health plans are trying to “shield Americans from the full impact of those rising costs,” Bond said.

The Lymphoma Research Foundation has seen a 10% increase in applications to its patient aid fund this year, CEO Meghan Gutierrez said. “This trajectory suggests that financial safety nets, when they exist, are straining,” she said.

Rising prices are affecting everyone, regardless of the kind of health insurance they have, if any, said Brian Blase, president of Paragon Health Institute, a Republican-aligned think tank. “The biggest challenge for cancer patients isn’t the type of coverage,” he said. “It’s the underlying cost of care.”

Blase pointed to President Donald Trump’s as potentially helpful to cancer survivors. The Medicare Drug Price Negotiation Program, established by the Inflation Reduction Act of 2022, required the Department of Health and Human Services to negotiate prices for certain high-cost drugs, to lower prices for the federal health insurance program for people ages 65 and older. Drugs for breast, prostate, and kidney cancers are already on that list, .

Yet Hoque fears efforts to weaken ACA protections and financial support for marketplace plans will give cancer survivors — who she said tend to “hang on to insurance for dear life” — fewer options, especially between jobs or during career changes.

Erin Jones, a 31-year-old food policy researcher living in Fort Collins, Colorado, who was diagnosed with Hodgkin lymphoma as a young adult, is now cancer-free but still sees two oncologists, visits a high-risk breast clinic, and gets a breast MRI annually. Jones gets health insurance through the university where she works, and said she recently deferred acceptance to a PhD program partly due to uncertainty over affordable coverage.

“I don’t have the freedom to do the things I want to do as easily,” she said, “because I am constantly worried about health insurance.”

Costs related to surviving cancer, including monitoring for recurrence and treatment of side effects, were expected to reach $246 billion by 2030, up from $183 billion in 2015, according to .

Advancements in both detecting and curing cancer have resulted in a higher percentage of people surviving five years or more after diagnosis, according to the American Cancer Society. The number of survivors is expected to grow to more than 22 million people by 2035, .

Despite these advancements, the cost of treatment can steal the spotlight, said Ezekiel Emanuel, a co-director of the Healthcare Transformation Institute at the University of Pennsylvania and a onetime health policy adviser to former President Barack Obama.

An oncologist, Emanuel said he had observed patients make the difficult decision to delay or skip postcancer care as a result.

“Even when we triumph,” he said, “we don’t seem to be able to have a celebration.”

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact Â鶹ŮÓÅ Health News and share your story.

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But seven months later, findings from five states shared with Â鶹ŮÓÅ Health News show that the reviews have uncovered little evidence of a widespread problem.

Only U.S. citizens and some lawfully present immigrants are eligible for Medicaid, which covers health care costs for people with low incomes and disabilities, and the closely related Children’s Health Insurance Program. Both programs are administered by states.

Spokespeople from Pennsylvania’s and Colorado’s Medicaid agencies said, as of March, the states had found no one who needed to be terminated from Medicaid. That was after checking a combined 79,000 names.

Texas has reviewed records of more than 28,000 Medicaid enrollees at the Trump administration’s request and terminated coverage for 77 of them, according to Jennifer Ruffcorn, a spokesperson for the Texas Department of Human Services.

Ohio has checked 65,000 Medicaid enrollees, of which 260 people were disenrolled from the program, said Stephanie O’Grady, a spokesperson for the Ohio Department of Medicaid.

In Utah, 42 of the 8,000 enrollees identified by the Trump administration had their Medicaid coverage terminated, said Becky Wickstrom, a spokesperson for the state’s Department of Workforce Services.

In announcing the reviews, Health and Human Services Secretary Robert F. Kennedy Jr. said: “We are tightening oversight of enrollment to safeguard taxpayer dollars and guarantee that these vital programs serve only those who are truly eligible under the law.”

Leonardo Cuello, a research professor at Georgetown University’s Center for Children and Families, said the reviews ordered by the federal Centers for Medicare & Medicaid Services were unneeded because states check immigration status when people sign up.

“It is entirely predictable that all of these burdensome reviews that the federal government is forcing upon states would yield no pay dirt,” Cuello said. “The states had already done the reviews once, and CMS was just making them reverify the same information they had already checked. Making states go through the same bureaucratic process twice is incredibly wasteful and inefficient.”

CMS spokesperson Chris Krepich said in a statement to Â鶹ŮÓÅ Health News that the ongoing checks are verifying eligibility “for certain enrollees whose status could not be confirmed through federal data sources.”

“CMS provides states with regular reports for follow-up review, and states are responsible for independently verifying eligibility and taking appropriate action consistent with federal requirements,” he said.

But the findings shared with Â鶹ŮÓÅ Health News also suggest that many of the enrollees whose eligibility the Trump administration said it could not confirm are indeed U.S. citizens. O’Grady said Ohio found that, of the 65,000 names referred by the federal government, the state already had information on 53,000 confirming them as citizens and an additional 11,000 showing appropriate immigration status for Medicaid.

Caseworkers then worked on the remaining 1,000 names to review their information or reach out for more details, she said.

CMS did not answer questions about the findings from the states sampled by Â鶹ŮÓÅ Health News or provide information about responses it received from all 50 states and the District of Columbia, which were instructed to perform verification checks.

The agency also did not respond to a question about whether it’s forwarding the names of those whose Medicaid coverage was terminated to federal immigration officials.

In June, advisers to Kennedy ordered CMS to share information about Medicaid enrollees with the Department of Homeland Security, prompting a lawsuit by some states alarmed that the administration would use the information for its deportation campaign against residents living in the U.S. without authorization.

A federal judge that Immigration and Customs Enforcement workers could access information only about people in the country unlawfully in the Medicaid databases of the states that sued.

CMS continues to send states lists of names at least every few months, though state officials say the numbers have declined since the first batch last summer.

People without legal status are ineligible for federally funded health coverage, including Medicaid, Medicare, and plans through the Affordable Care Act marketplaces. Medicaid does reimburse hospitals for providing emergency care to people without legal status if they meet income and other program requirements.

Seven states and the District of Columbia provide health coverage regardless of immigration status, funding the programs with their own money.

In March 2025, CMS began financial reviews of those programs. “CMS has identified over $1.8 billion in federal funds that are being recouped through voluntary returns and deferrals of future federal Medicaid payments,” Krepich said. He did not answer how much has been collected so far or from which states.

Medicaid’s overall spending topped $900 billion in fiscal year 2024.

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It’s one of the many parts of the 25-bed rural hospital that need updating, former CEO Ron Wiens said.

He said the hospital, an essential service in its namesake town of nearly 800 residents in the state’s sprawling north-central high plains, needs at least $1 million for deferred maintenance, including a failing HVAC system. But the facility has struggled to make payroll each month and can’t afford to make all the fixes, Wiens said.

Built by farmers and ranchers in 1965, Big Sandy Medical Center began with nine beds. Today, a similar community effort — donations and grants to plug financial holes each year — keeps it afloat.

Wiens, who recently left his position at the hospital, said he wishes Big Sandy could get funding from Montana’s share of the $50 billion federal Rural Health Transformation Program to renovate the hospital and direct payments to help secure its future. The state received more than $233 million in its first-year award.

But the hospital may not get the kind of help he sought.

That’s because the five-year program focuses on new, creative ways to improve access to rural health care, not on directly funding services and renovations. And Montana is one of at least 10 states whose leaders say projects launched under the federal program could lead rural hospitals to cut services so they can continue to afford to offer emergency and other essential care.

Congressional Republicans created the fund as a last-minute sweetener to their One Big Beautiful Bill Act, signed into law last summer. The funding was intended to offset disproportionate fallout anticipated in rural communities from the law, which is expected to slash Medicaid spending .

includes programs to make it easier for rural residents to get medical care and live a healthy lifestyle. For example, it says funding can be used to start community gardens, train paramedics to make home visits, open school-based clinics, or bring mobile clinics to rural areas.

rural Montana hospitals can receive payments for implementing recommendations, “including right-sizing select inpatient services” to match demand. In some cases, it says, right-sizing might mean “downsizing.” The state says hospitals will have input and recommendations will be specific to each facility.

“That’s what has all the hospitals on pins and needles, words like restructuring, reducing inpatient beds. Everybody is going, ‘What is this going to look like?’” Wiens said.

The Montana Department of Public Health and Human Services declined to answer questions about how it will carry out its right-sizing efforts.

A Lifeline of Care

Big Sandy cattle rancher Shane Chauvet doesn’t want any services cut.

He credits Big Sandy Medical Center with saving his life after a flying piece of metal nearly cut off his arm during a windstorm a few years back.

“I looked over, saw it coming, and whack!” Chauvet recalled.

His wife drove him to the hospital, where they frantically pounded on the ER door while Chauvet’s blood pooled on the ground.

Because of the storm, staffers worked on Chauvet with no power and no ability to summon a helicopter. He was then taken by ambulance 80 miles through intense rain and hail to a larger hospital.

Chauvet understands the state’s plan doesn’t call for eliminating emergency care, but he worries that reducing other services would set off a downward spiral for the hospital and his town.

In Oklahoma, realigning clinical services could mean “shutting down service lines,” to the federal program. And in Wyoming, any facility that receives funding must agree to “reduce unprofitable, duplicative or nonessential service lines,” .

Monique McBride, business operations administrator at the Wyoming Department of Health, said the department interprets right-sizing as helping rural hospitals provide essential services — such as emergency departments, ambulance services, and labor and delivery units — while maintaining long-term, financial stability.

“This might involve limiting some elective procedures that could be done at lower cost in higher-volume facilities. The main distinction here is time-sensitive emergencies vs. ‘shoppable’ services,” she said.

A New Lease on Life?

Seven of the 10 states — Nebraska, North Dakota, Tennessee, Kansas, Nevada, South Carolina, and Washington — where rural hospital service cuts are on the table say they’ll help pay for hospitals to convert to Rural Emergency Hospitals. The recently created federal designation requires hospitals to halt inpatient services and offers enhanced payments to help them maintain emergency and outpatient care.

At least 15 additional states wrote that they’ll use the federal funding to right-size, evaluate, or adjust services — which could mean adding or taking away services, or transitioning them to a telehealth or outpatient setting.

Brock Slabach, chief operations officer of the National Rural Health Association, said, “There’s a proper concern from rural hospital administrators that this funding is not going to where it was intended.”

He said cutting services that lose money could backfire in the long run. For example, he said, halting labor and delivery care might drive more people out of small towns, further reducing hospitals’ patient numbers and revenue.

The type of hospital services that states will assess matters, said Tony Shih, a senior adviser at the Commonwealth Fund, a nonprofit focused on making health care more equitable.

“If the end result is that high-margin services are taken away from local hospitals with nothing given back in return, it can be financially harmful,” he said.

Shih noted that states’ plans to add more outpatient care could prove beneficial for patients. It’ll take time to know which states help stabilize rural hospitals, he said.

Rural hospital leaders say they know which changes would keep their facilities open and that states shouldn’t suggest or mandate service cuts and other changes on their behalf.

Josh Hannes, who oversees rural health policy at the Colorado Hospital Association, said “top-down” directives won’t work.

He said the association’s members believe they can find efficiencies and are eager to collaborate. But “a state agency shouldn’t be making those determinations,” he said.

Hannes said members are worried Colorado’s plan to classify rural health facilities as a “hub, spoke, or telehealth node” will compel service reductions. The classification will help determine “which services are sustainable locally and which are best provided regionally or through telehealth,” .

Spokespeople for the Colorado and Oklahoma health departments said no facility will be forced to end services. But Oklahoma spokesperson Rachel Klein said some facilities might choose to do so as part of a broader effort to make sure they’re meeting community needs while remaining financially stable.

“A hospital might shift certain services to a nearby regional provider with higher patient volume and specialized staff while expanding other local services,” such as primary, outpatient, or community-based care, she said.

Wiens and Darrell Messersmith, CEO of Dahl Memorial Hospital in the southeastern Montana town of Ekalaka, said they worry the only way hospitals will get their share of funding is to cut services or become Rural Emergency Hospitals that don’t offer inpatient services.

“I would hate to see things shift toward a pack-and-ship facility,” Messersmith said. “Right now, we function quite well as an inpatient facility.”

Not all Montana health leaders are worried.

Ed Buttrey, president and CEO of the Montana Hospital Association, said he thinks his state’s plan could help rural hospitals become financially sustainable and survive Medicaid cuts. Buttrey is also a Republican state lawmaker.

Chauvet, the Big Sandy rancher, said his perspective on whether remote towns like his should have a hospital is forever changed because of his accident.

“I always would say, ‘Oh, they’re nice to have,’ but now I look at the hospital and say, ‘That’s essential to our community,’” he said.

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The legislation would prohibit state and local governments from requiring crisis pregnancy centers to perform abortions, provide referrals for abortion services, or inform patients about such services or contraception options. It also would allow crisis pregnancy centers to sue the violating government entity.

Wyoming lawmakers of the Center Autonomy and Rights of Expression Act, or , on March 4. Other versions have advanced in and this year. One was in 2025. The CARE Act is “model legislation” created by the , an anti-abortion, conservative Christian legal advocacy group.

A similar proposal, the , was introduced in Congress last year but hasn’t moved out of the House Energy and Commerce Committee.

The Wyoming bill says that pregnancy centers, many of which are affiliated with religious organizations, need legal protection after facing “unprecedented attacks” following the Supreme Court’s overturning of Roe v. Wade. It says that several state legislatures have introduced bills that . Opponents of these centers say they falsely present themselves to consumers as medical clinics, though they are not subject to state and federal laws that protect patients in medical facilities.

“Across the country, government officials are increasingly, increasingly targeting pregnancy care centers,” Valerie Berry, executive director of the in Cheyenne, said at a February legislative hearing on the Wyoming bill. “This legislation is not about creating division. It’s about protecting constitutional freedoms, freedom of speech, and freedom of conscience.”

Wyoming state , a Republican, expressed concern at the hearing about granting protections to pregnancy centers that other private businesses do not have.

“They have protections in place,” he said. “My issue with this is giving extra special protections.”

In 2022, Wellspring Health Access, the only clinic in Wyoming that provides abortions, in an arson attack.

“We are the ones providing the accurate information on reproductive health care, and we suffer the consequences for that,” Julie Burkhart, the president and founder of Wellspring Health Access, told Â鶹ŮÓÅ Health News.

, a professor at the University of California-Davis School of Law, said the proposed legislation would insulate crisis pregnancy centers from having to meet the standards that medical organizations face. It would blur the line between advocacy and medical practice, she said. And such legislation provides Republicans with a potentially useful campaign message ahead of midterm elections.

“The GOP needs a messaging strategy as for how it cares about women even if it bans abortion and even if it doesn’t want to commit state resources to helping people before and after pregnancy,” Ziegler said. “The strategy is to outsource that to pregnancy counseling centers, which of course increases the incentive to protect them.”

Model Legislation

The Alliance Defending Freedom is the same group that , the 1973 court ruling that protected the right to abortion nationwide. The group drafted model legislation to establish a 15-week abortion ban that was the basis of a 2018 Mississippi law. That led to the Dobbs v. Jackson Women’s Health Organization Supreme Court case that overturned Roe.

The alliance said its attorneys were unavailable to comment on the organization’s strategy for the CARE Act. In for the bill, the group said federal, state, and local efforts are targeting pregnancy care centers in a “clear attempt to undermine and impede” their work and shut them down.

In recent years, have been targeted with vandalism and threats.

But the attacks the model legislation primarily aims to address are the legal and regulatory efforts by some states seeking more oversight of the crisis pregnancy centers, including a California law requiring centers to clearly inform patients about their services. That law was overturned when the Supreme Court ruled in favor of crisis pregnancy centers’ argument that it violated their First Amendment rights.

The Supreme Court is that will decide whether states can subpoena the organizations for donor and internal information.

It’s unlikely that crisis pregnancy centers would face such regulatory measures in the conservative states where the legislation is under consideration. One Wyoming lawmaker acknowledged that in the February committee hearing.

Differing Services

During that hearing, state , a Republican who heads the committee sponsoring the bill, presented the measure as “so important, especially with our maternity desert,” referring to a lack of access to maternity health care services.

Some crisis pregnancy centers may have a few licensed clinicians, but many do not. Many offer free resources, such as diapers, baby clothing, and other items, sometimes in exchange for participation in counseling or parenting classes.

Planned Parenthood clinics, by contrast, provide a range of health services, such as testing and treatment for sexually transmitted infections, primary care, and screenings for cervical cancer. They also are regulated as medically licensed organizations.

Since Roe was overturned, the abortion rights movement has faced significant challenges. Congressional Republicans’ One Big Beautiful Bill Act, which President Donald Trump signed into law last summer, to abortion providers. The move contributed to Planned Parenthood closing last year.

As of 2024, operated nationwide, according to a map created by researchers at the University of Georgia, compared with providing abortions at the end of 2025.

a research organization affiliated with the anti-abortion nonprofit SBA Pro-Life America, has suggested that pregnancy centers could help fill the gap left by the Planned Parenthood closures.

Ziegler said that would leave patients vulnerable to medical risks.

Centers’ Growing Power

Previous efforts in , Colorado, and Vermont to regulate crisis pregnancy centers arose from concerns over allegations of and questions about .

In 2024, in five states to investigate whether centers were misleading patients into believing that their personal information was protected under the Health Insurance Portability and Accountability Act, known as HIPAA, and to find out how the centers were using patients’ information.

Courts, including the Supreme Court, have regularly that argue the attempts at regulation are violations of their First Amendment rights to free speech and religious expression.

Crisis pregnancy centers also have seen a flood of funding since Roe was overturned.

At least , including crisis pregnancy centers, according to the Lozier Institute.

Six states distribute a portion of their federal Temporary Assistance for Needy Families funding — cash payments meant for low-income families with children — to crisis pregnancy centers. Texas, Florida, Tennessee, and Oklahoma have provided tens of millions of dollars for the organizations.

One analysis found that crisis pregnancy centers also received from 2017 to 2023, including from the 2020 relief package signed into law during Trump’s first term amid the covid pandemic.

Despite the challenges clinics that provide abortions face, Burkhart, the head of the Wellspring facility in Wyoming, said it’s important to continue offering access to people who need it. She’s helped open clinics in rural parts of other conservative states and said those clinics continue to see people walking through their doors.

“That proves to me, regardless of your religion, political party, there are times in people’s lives that people need access to qualified reproductive health care,” she said. “That includes abortion.”

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Â鶹ŮÓÅ Health News southern correspondent Sam Whitehead discussed Medicaid work requirements on WUGA’s The Georgia Health Report on March 6.

• Read Whitehead’s “New Medicaid Work Rules Likely To Hit Middle-Aged Adults Hard,” co-reported with Samantha Liss.

Â鶹ŮÓÅ Health News Colorado correspondent Rae Ellen Bichell discussed wage garnishment legislation on KUNC’s In the NoCo on March 5.

• Read Bichell’s “State Lawmakers Seek Restraints on Wage Garnishment for Medical Debt.”

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Within a few days, Reynolds became so desperate that she and her husband had to physically restrain Jonah, dumping pain medication down his throat as he screamed in pain.

“It broke our hearts,” said Reynolds, who lived in Georgetown, Kentucky, at the time. “And I remember just thinking that it shouldn’t have to come to that.”

Reynolds couldn’t find a dentist with an opening who could treat Jonah, who is autistic and often resists dental exams due to hypersensitivity and anxiety. Over the course of five days, Reynolds took Jonah twice to a nearby emergency room as he struggled with persistent pain and a fever due to a likely infected tooth with an exposed nerve. The ER had no dentists; both times, the family was sent home with only pain medication and an ice pack.

Across the nation, more children are entering ERs for preventable tooth problems. Dentists, hygienists, and researchers attributed that trend to a shortage of pediatric dental care professionals in and worsening oral hygiene since the covid-19 pandemic. Tens of thousands of kids end up in the hospital for dental emergencies each year, according to Melissa Burroughs, senior director of policy and advocacy at the national health nonprofit CareQuest Institute for Oral Health.

ER visits for tooth problems unrelated to physical injuries for children under 15 years old from 2019 to 2022, according to a report released late last year by CareQuest. And local data reflects that national trend: At Children’s Hospital Colorado in the Denver area, nontraumatic dental cases, such as cavities or gum infections, in its ER increased 175% from 2010 to 2025, according to hospital spokesperson Sarah Bonar. In Kentucky, where Jonah lives, children’s visits to the ER for dental problems rose 72% from 2020 to 2024, according to the state.

Policy changes under the Trump administration are poised to worsen the trend. President Donald Trump’s 2025 federal budget reconciliation law, known as the One Big Beautiful Bill Act, called for billions in cuts from Medicaid, which may force states to limit or drop dental coverage from the public insurance program for those with low incomes or disabilities. New eligibility requirements for Medicaid in some states could affect kids’ access to dental care, even though children are guaranteed dental coverage under the program. Research shows that when parents lose Medicaid, even kids with coverage are more likely to have and to go to a dentist.

The Trump administration has also promoted skepticism about fluoride. show that fluoride in drinking water and topical fluoride treatments dramatically reduce tooth decay and prevent cavities. In recent months, the Food and Drug Administration against the use of fluoride supplements and the Environmental Protection Agency of “potential health risks of fluoride in drinking water.” Health and Human Services Secretary Robert F. Kennedy Jr. has called fluoride a “” and “.” A 2025 study in JAMA Pediatrics linked high levels of fluoride with lower IQ in children — but only at concentrations the recommended level in public drinking water.

, a pediatric dentist at the University of Washington who studies fluoride hesitancy, worries that these anti-fluoride stances will further erode trust in fluoride treatment. Since the start of 2026, lawmakers in at least 15 states have introduced bills prohibiting or limiting fluoride in public drinking water. Utah and Florida in 2025 became the first states to enact fluoride bans.

“Will that have an effect on cavity rates?” Chi asked. “Absolutely.”

Severe Dental Cases Rise

Pediatric dentists Katherine Chin and Chaitanya Puranik said they are treating more patients like Jonah at Children’s Hospital Colorado. More severe cases have become more common, too. Puranik said he used to typically see patients with only one cavity, but now his patients are often coming in with tooth decay throughout their mouth.

During the pandemic, many dental offices , and studies show children also increased , a major risk factor for cavities. Severe cavities that lead to tooth extraction can affect , sometimes causing long-term problems with or .

Millions of people live in in the U.S., with scant dentists within driving distance. On top of that, only treat Medicaid patients, due to low reimbursement rates, which are on average of their typical dental charges, according to the American Dental Association.

Children with intellectual or developmental disabilities may especially struggle to access quality dental care. Few general dentists have sufficient pediatric training to care for kids with disabilities such as Jonah, who are easily overwhelmed or need to be sedated for an exam, , a health information nonprofit that includes Â鶹ŮÓÅ Health News. Over have special health care needs, and those children are to have unmet dental needs. Their parents are also to finding a dentist.

When he was younger, Jonah would not let his parents brush his teeth, which led to cavities in his baby teeth, his mother said. After Jonah’s first visit to the ER, Reynolds found a general dentist with an opening. But unlike a trained pediatric dentist, she said, the dentist did not know how to examine Jonah in a way he could tolerate and wasn’t prepared to provide sedation. Jonah left without treatment and was soon back in the ER when his fever returned.

ERs Rarely Provide Solutions

, a pediatrician in Washington County, Maine, said he is fielding “the most horrifying cavities” at Down East Community Hospital.

ERs are often ill-equipped to treat dental concerns, Weitz said. Similar to the ER Jonah went to in Kentucky, Down East has no dentists on staff. Weitz often finds himself prescribing antibiotics as a temporary measure.

“But a month later, they’re back again because it’s flaring up again,” Weitz said.

As a potential solution, states such as Maine and Alaska are proposing to use money from the $50 billion to develop the oral health workforce or to create specialized dental care centers, which can better serve children with special health care needs on short notice. But those initiatives won’t address the loss of coverage anticipated from Medicaid cuts. California last year in state grants to develop or expand over 120 dental facilities to serve patients with special health care needs.

Jonah’s dental emergency cost Reynolds a week of work from her job as a dog groomer and Jonah three days of third grade, plus hundreds of dollars in out-of-pocket costs.

Eventually, Reynolds found an oral surgeon who extracted the tooth. But even that went poorly, she said. When Jonah became upset over a needle stick, the surgeon threatened to hold him down, Reynolds said. She said the surgeon left quickly after the procedure and never gave her a clear diagnosis of what caused Jonah’s pain. The procedure did resolve his toothache, but Reynolds said more professionals should know how to handle cases like Jonah’s, with sensitivity to the families. Four years later, forcing Jonah to take his pain meds still lives fresh in her memory.

“That will never leave my mind,” Reynolds said.

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After Health and Human Services Secretary Robert F. Kennedy Jr. fired Centers for Disease Control and Prevention Director Susan Monarez for refusing what her lawyers called “,” Newsom to help modernize California’s public health system. He also gave a job to Debra Houry, the agency’s former chief science and medical officer, who had resigned in protest hours after Monarez’s firing.

Newsom also teamed up with fellow Democratic governors Tina Kotek of Oregon, Bob Ferguson of Washington, and Josh Green of Hawaii to form the , a regional public health agency, whose guidance would “uphold scientific integrity in public health as Trump destroys” the CDC’s credibility. Newsom argued establishing the independent alliance was vital as Kennedy leads the Trump administration’s rollback of national vaccine recommendations.

More recently, California became the a global outbreak response network coordinated by the World Health Organization, followed by Illinois and New York. Colorado and Wisconsin signaled they plan to join. They did so after President Donald Trump officially from the agency on the grounds that it had “strayed from its core mission and has acted contrary to the U.S. interests in protecting the U.S. public on multiple occasions.” Newsom said joining the WHO-led consortium would enable California to respond faster to communicable disease outbreaks and other public health threats.

Although other Democratic governors and public health leaders have openly criticized the federal government, few have been as outspoken as Newsom, who is considering a run for president in 2028 and is in his second and final term as governor. Members of the scientific community have praised his effort to build a public health bulwark against the Trump administration’s slashing of funding and scaling back of vaccine recommendations.

What Newsom is doing “is a great idea,” said Paul Offit, an outspoken critic of Kennedy and a vaccine expert who formerly served on the Food and Drug Administration’s vaccine advisory committee but was removed under Trump in 2025.

“Public health has been turned on its head,” Offit said. “We have an anti-vaccine activist and science denialist as the head of U.S. Health and Human Services. It’s dangerous.”

The White House did not respond to questions about Newsom’s stance and HHS declined requests to interview Kennedy. Instead, federal health officials criticized Democrats broadly, arguing that blue states are participating in fraud and mismanagement of federal funds in public health programs.

HHS spokesperson Emily Hilliard said the administration is going after “Democrat-run states that pushed unscientific lockdowns, toddler mask mandates, and draconian vaccine passports during the covid era.” She said those moves have “completely eroded the American people’s trust in public health agencies.”

Public Health Guided by Science

Since Trump returned to office, Newsom has criticized the president and his administration for engineering policies that he sees as an affront to public health and safety, labeling federal leaders as “extremists” trying to “weaponize the CDC and spread misinformation.” He has for erroneously linking vaccines to autism, the administration is endangering the lives of infants and young children in scaling back childhood vaccine recommendations. And he argued that the White House is unleashing “chaos” on America’s public health system in backing out of the WHO.

The governor declined an interview request. Newsom spokesperson Marissa Saldivar said it’s a priority of the governor “to protect public health and provide communities with guidance rooted in science and evidence, not politics and conspiracies.”

The Trump administration’s moves have triggered financial uncertainty that local officials said has reduced morale within public health departments and left states unprepared for disease outbreaks and . The White House last year proposed cutting HHS spending , including . Congress largely rejected those cuts last month, although funding for programs focusing on social drivers of health, such as access to food, housing, and education, .

The Trump administration announced that it would claw back in public health funds from California, Colorado, Illinois, and Minnesota, arguing that the Democratic-led states were funding “woke” initiatives that didn’t reflect White House priorities. Within days, and a judge the cut.

“They keep suddenly canceling grants and then it gets overturned in court,” said Kat DeBurgh, executive director of the Health Officers Association of California. “A lot of the damage is already done because counties already stopped doing the work.”

Federal funding has accounted for of state and local health department budgets nationwide, with money going toward fighting HIV and other sexually transmitted infections, preventing chronic diseases, and boosting public health preparedness and communicable disease response, according to a 2025 analysis by Â鶹ŮÓÅ, a health information nonprofit that includes Â鶹ŮÓÅ Health News.

Federal funds account for $2.4 billion of California’s $5.3 billion public health budget, making it difficult for Newsom and state lawmakers to backfill potential cuts. That money helps fund state operations and is vital for local health departments.

Funding Cuts Hurt All

Los Angeles County public health director Barbara Ferrer said if the federal government is allowed to cut that $600 million, the county of nearly 10 million residents would lose an estimated $84 million over the next two years, in addition to other grants for prevention of HIV and other sexually transmitted infections. Ferrer said the county depends on nearly $1 billion in federal funding annually to track and prevent communicable diseases and combat chronic health conditions, including diabetes and high blood pressure. Already, the the closure of that provided vaccinations and disease testing, largely because of funding losses tied to federal grant cuts.

“It’s an ill-informed strategy,” Ferrer said. “Public health doesn’t care whether your political affiliation is Republican or Democrat. It doesn’t care about your immigration status or sexual orientation. Public health has to be available for everyone.”

A single case of measles requires public health workers to track down 200 potential contacts, Ferrer said.

The U.S. but is close to losing that status as a result of vaccine skepticism and misinformation spread by vaccine critics. The U.S. had , the most since 1991, with 93% in people who were unvaccinated or whose vaccination status was unknown. This year, the highly contagious disease has been reported at , , and .

Public health officials hope the West Coast Health Alliance can help counteract Trump by building trust through evidence-based public health guidance.

“What we’re seeing from the federal government is partisan politics at its worst and retaliation for policy differences, and it puts at extraordinary risk the health and well-being of the American people,” said Georges Benjamin, executive director of the American Public Health Association, a coalition of public health professionals.

Robust Vaccine Schedule

Erica Pan, California’s top public health officer and director of the state Department of Public Health, said the West Coast Health Alliance is defending science by recommending a vaccine schedule than the federal government. California is part of a coalition over its decision to rescind recommendations for seven childhood vaccines, including for hepatitis A, hepatitis B, influenza, and covid-19.

Pan expressed deep concern about the state of public health, particularly the uptick in measles. “We’re sliding backwards,” Pan said of immunizations.

Sarah Kemble, Hawaii’s state epidemiologist, said Hawaii joined the alliance after hearing from pro-vaccine residents who wanted assurance that they would have access to vaccines.

“We were getting a lot of questions and anxiety from people who did understand science-based recommendations but were wondering, ‘Am I still going to be able to go get my shot?’” Kemble said.

Other states led mostly by Democrats have also formed alliances, with Pennsylvania, New York, New Jersey, Massachusetts, and several other East Coast states banding together to create the .

HHS’ Hilliard said that even as Democratic governors establish vaccine advisory coalitions, the federal “remains the scientific body guiding immunization recommendations in this country, and HHS will ensure policy is based on rigorous evidence and gold standard science, not the failed politics of the pandemic.”

Influencing Red States

Newsom, for his part, has approved a recurring annual infusion of nearly $300 million to support the state Department of Public Health, as well as the 61 local public health agencies across California, and last year authorizing the state to issue its own immunization guidance. It requires health insurers in California to provide patient coverage for vaccinations the state recommends even if the federal government doesn’t.

Jeffrey Singer, a doctor and senior fellow at the libertarian Cato Institute, said decentralization can be beneficial. That’s because local media campaigns that reflect different political ideologies and community priorities may have a better chance of influencing the public.

A Â鶹ŮÓÅ analysis found some red states are joining blue states in decoupling their vaccine recommendations from the federal government’s. Singer said some doctors in his home state of Arizona are looking to more liberal California for vaccine recommendations.

“Science is never settled, and there are a lot of areas of this country where there are differences of opinion,” Singer said. “This can help us challenge our assumptions and learn.”

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Sam Walker, 35, has severe autism and other disabilities. He is deaf and cannot speak. Sometimes when he’s frustrated, he hits himself or others.

Medicaid provides about $8,500 a month for health workers who visit his apartment in the basement of his parents’ home. The staffers help him with everyday tasks, including dressing, bathing, and eating. They also take Walker on outings, such as dining at restaurants, volunteering at Goodwill, and exercising at a recreation center or on park trails. They stick to a strict routine, which soothes him.

His parents say that without the in-home services, their son would need to move to a specialized residential facility in another state. Sending him away would break their hearts and cost taxpayers much more money. They strive to keep him home because they know change makes him anxious.

“The last thing I want is to put him into some kind of care facility, where he’ll just get kicked out,” said his mother, Leisa. The Iowa Department of Health and Human Services did not respond to Â鶹ŮÓÅ Health News’ questions about the Walkers’ case.

Federal Cuts Raise Pressure

Patient advocates say state administrators in Iowa appear to be reining in Medicaid spending by cutting what are known as home and community-based services for people with disabilities, and they’ve heard of multiple families facing battles like the Walkers’.

Disability rights advocates expect the pressure to intensify as states respond to reductions in federal Medicaid funding called for under the Trump administration’s signature tax and spending law, which passed last year.

June Klein-Bacon, CEO of the Brain Injury Association of Iowa, said the cuts and proposed rule changes appear to be part of a quiet attempt to save money in response to the state’s budget deficit and expected reductions in federal Medicaid funding.

Medicaid, jointly financed by the federal and state governments, covers people with low incomes or disabilities. Walker is one of served by “Medicaid waiver” programs, which pay for care that allows people with disabilities or who are at least 65 to live at home.

Unlike most parts of Medicaid, waiver programs are optional for states. Idaho’s governor noted that fact in January, when he suggested legislators consider cutting them. Disability rights groups fear other states will do the same. Leaders in , , and have considered such cuts this year.

Leisa Walker has heard Trump administration officials claim the national Medicaid cuts are intended to reduce waste, fraud, and abuse. That’s not how it will play out, she said. “These are real people, real families, and this causes real suffering when you do this to people,” she said. “It’s a very scary time.”

a private insurance company that manages Sam Walker’s Medicaid benefits, intends to cut his in-home care coverage by about $3,200 per month, his mother said. Company leaders told a judge they are following state officials’ direction, but they did not dispute Leisa Walker’s math.

Walker has been on the waiver program for three decades. It covers assistance from workers known as “direct service providers” — one of whom has been with him for 25 years. His parents receive no pay for the hours they spend caring for him when the aides aren’t working.

On a February morning, Leisa and Kent Walker drove an hour and a half to Des Moines for an appeal hearing. An administrative law judge sat behind a wooden desk in a conference room as the Walkers and their lawyer faced off against three representatives from Iowa Total Care, a subsidiary of the national insurer Centene Corp.

Leisa testified that her son is 6 feet tall and weighs 230 pounds. Although he knows some sign language, he has trouble communicating, she said. When he becomes frustrated or his routine is interrupted, he sometimes wails and hits himself or other people. “It’s devastating to watch,” she testified.

He’s not a bad person, she said. “He doesn’t understand how strong he is.”

She said her family would try to keep his main caregiver employed under the planned Medicaid reduction but would have to drop others who cover nights and weekends. She said no residential facility near their southern Iowa home could address her son’s complicated needs. She said a case manager told her that a Florida facility might be the closest one that could safely handle him.

Leisa Walker testified that the state’s Medicaid program would pay about $22,000 per month to put him in an institution, more than double what the program spends on his home care.

Sam Walker’s longtime psychiatrist, Christopher Okiishi, testified that Walker’s family and their support staff spent years developing a “fragile” but stable existence for him.

Lori Palm, a senior manager for Iowa Total Care, testified that Sam Walker gets about 16 hours of daily assistance financed by Medicaid. Palm said much of that time amounts to “supervision.” She said state officials recently advised her company that the program should pay mainly for “skill-building” time, not supervision.

The Walkers showed the judge a 2018 document in which a previous Iowa Medicaid director stipulated that supervision of people with disabilities is an allowable service for workers paid under the program.

Judge Rachel Morgan asked the Iowa Total Care representatives if the recent policy change was made in writing by the state Department of Health and Human Services. They said it was not and that they couldn’t specify who at the department had given them the new guidance.

The judge suggested during the hearing that for someone like Sam Walker, learning to regulate emotions could be an important form of skill-building. Three days later, the judge ruled in the Walkers’ favor, writing that the insurer’s attempt to cut care hours was improper. The insurer appealed the decision to the director of the Iowa Department of Health Human Services, who could overrule it. The dispute could eventually wind up in district court.

Iowa Total Care and the state Department of Health and Human Services did not respond to questions about the reports that many other Iowans with disabilities face reductions in care hours covered by Medicaid. Department spokesperson Danielle Sample said in an email that the agency supports home and community-based services, which, she noted, help “states save money by avoiding expensive long-term facility care.”

Spokespeople for the federal Department of Health and Human Services, which oversees Medicaid nationally, did not respond to a request for comment on the issue.

Medicaid waiver programs started in the 1980s, after President Ronald Reagan heard about an Iowa girl with a disability who was forced to live in a hospital for months because Medicaid wouldn’t pay for home care. The Republican president thought it was outrageous that the girl, had to live that way, even though home care would have been cheaper.

Members of Congress approved allowing states to use their Medicaid programs to pay for in-home care. But they made the change optional, to offer states flexibility and encourage innovation.

Designating such spending as optional “waiver programs” also made the change more politically palatable, said Kim Musheno, senior director of Medicaid policy for , which represents people with intellectual and developmental disabilities.

Prospects were much different for babies born with serious disabilities before the change, Musheno said. “Doctors instructed families to forget they existed, and to put them in an institution.”

Waivers Have Been Cut Before

All states have Medicaid waiver programs, but benefits and the number of people covered vary significantly. Applicants often wait months or years to get into the programs because of limited funding. More than 600,000 Americans were on waiting lists or “interest lists” for waiver services in 2025, , a health information nonprofit that includes Â鶹ŮÓÅ Health News.

Disability rights advocates and care providers have fought for decades to maintain funding for the programs, but a national leader said the threat feels especially severe now.

“When Medicaid is cut, people with disabilities are at the center of the impact,” said Barbara Merrill, CEO of the American Network of Community Outcomes and Resources, which represents agencies that care for people with intellectual disabilities or autism.

That’s what happened after Congress reduced Medicaid funding in 2011, according to a recent paper published by .

States could again rein in waiver programs by limiting enrollment, reducing covered services, or cutting pay for caregivers, who already are in short supply.

However, states that try to cut the in-home care programs could face legal challenges, Musheno said. The U.S. Supreme Court declared in 1999 that people with disabilities have a right to live outside of institutions if possible. The decision, in the case of , has been cited in lawsuits against states that fail to provide care options apart from nursing homes and similar facilities.

Several Iowans who belong to a Facebook group for Medicaid participants have posted in recent weeks that their families were notified of impending cuts in coverage of home care services for people with disabilities.

Sam Walker’s main caregiver, Andy Koettel, has worked with him since Walker was in fourth grade. Koettel, who works full-time, knows how to keep Walker calm in most situations and soothe him during a blowup. Their relationship took years to build, and it is a key reason Walker can continue to live at home with his parents, Koettel said.

“If I was not there, it would be incredibly difficult for all of them,” he said.

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But plans to spend those nine-digit awards aren’t all warmly received.

At least one group of Republican state lawmakers appears to have scuttled an initiative preapproved by federal officials. And at least one hospital association persuaded its state health leaders to alter who greenlights spending. Other critics are taking a more cautious approach.

That’s because the Centers for Medicare & Medicaid Services, which manages the five-year Rural Health Transformation Program, says states could lose money if they make major changes to the plans approved in their applications. Changes could also delay states’ ability to get projects rolling in time to show the agency that they’re meeting progress deadlines.

“During the application period, states were advised to only propose initiatives and state policy actions that the state deemed feasible,” said CMS spokesperson Catherine Howden, who noted that the agency will work with states case by case.

The recent pushback reflects “tension” over state plans — which were approved by the federal government — from state lawmakers and health leaders who want more input amid tight deadlines, said Carrie Cochran-McClain, chief policy officer of the National Rural Health Association, the largest organization representing rural hospitals and clinics.

Cochran-McClain said many states must pass a bill to allow federal dollars to be spent and added that because the program rolled out so quickly “there’s important work that still needs to be done in some states between the legislatures and the governors.”

State lawmakers want to have a say, she said, in “how the funding is being allocated — how the implementation will go.”

Congressional Republicans created the program as a last-minute sweetener to include in their One Big Beautiful Bill Act, signed into law last summer. The funding was intended to offset concerns about the anticipated in rural communities from the law, which is expected to slash Medicaid spending by nearly $1 trillion over a decade.

CMS officials announced first-year funding — ranging from $147 million for New Jersey to $281 million for Texas — on Dec. 29, after scoring applications. Federal officials will begin evaluating progress in late summer and announce 2027 allocations at the end of October.

A chorus of critics say the program won’t make up for harm caused by Medicaid cuts.

The program is “a complete sham,” Sen. Ron Wyden (D-Ore.) said at a rural policy conference in February.

Medicaid, a joint federal-state program for low-income and disabled Americans, serves nearly , and many rural hospitals depend on it to stay afloat.

But the rural health program tilts toward seeding innovative projects and technologies, not shoring up rural hospital finances. States can use only up to 15% of their funding to pay providers for patient care.

That hasn’t stopped some federal officials and lawmakers from framing the program as a rural hospital rescue.

For example, the White House , “President Trump secured $50 billion in funding for rural hospitals.”

Now that applications have been approved, some state Republican lawmakers — who are than Democrats are — and hospital associations are upset that the political rhetoric doesn’t match what they see.

They’re also lobbing criticisms at specific aspects of their states’ plans, including the proposed projects, what’s not included, and the spending approval process.

In Wyoming, lawmakers didn’t just criticize an initiative from their state’s application. They moved to kill it.

State Rep. John Bear, a Republican, said he and other lawmakers declined to fund “BearCare,” a proposed state-sponsored health insurance plan that patients could use only after medical emergencies. But they did approve other aspects of the rural health program.

The Wyoming Department of Health won’t “proceed with BearCare without express legislative authority to do so,” said spokesperson Lindsay Mills.

While Wyoming lawmakers removed an initiative from their state’s rural health plan, a group in Ohio wants to add something.

Ohio Rep. Kellie Deeter and other Republican lawmakers to use the maximum allowed funding for provider payments — 15% — to support 13 independent, rural hospitals.

“We understand that the rural transformation fund is not designed to be given directly to prop up hospitals,” Deeter said. “We just want to capitalize on the mechanism of the fund that can be utilized for that purpose.”

Those hospitals “operate with very, very narrow margins, and it’s just difficult and, frankly, unsustainable,” she added.

Ken Gordon, a press secretary responding for the governor’s office and the state health department, said, “It’s still very early in this process, and many details are being worked out.”

State lawmakers around the country are also trying to ensure the federal program’s dollars benefit rural areas.

In North Dakota, Rep. Bill Tveit, a Republican who lives in a town with about 2,000 residents, that would have required the state to reserve its funding for programs located more than 35 miles from urban areas and small cities.

During a hearing, lawmakers appeared sympathetic to Tveit’s concerns but quickly shot down his idea.

State Sen. Brad Bekkedahl said the North Dakota health department already committed to prioritizing funding for the most pressing rural health needs. He also said he’s concerned any significant changes could cause the state to lose funding because CMS already reviewed and approved the plan.

Meanwhile, Republican lawmakers in Michigan and North Carolina have criticized their states’ definitions of “partially rural” or “rural,” saying that counties that include urban population centers could take money from lower-density counties, according to and .

Lawmakers aren’t the only ones speaking out.

The Colorado Hospital Association to state lawmakers denouncing how the state created its plan and two of its proposed initiatives.

“Not only were Colorado’s rural hospitals’ recommendations disregarded,” president and CEO Jeff Tieman wrote, but the plan includes ideas “they actively oppose and believe will harm the communities they serve.”

The department responded to one of the association’s concerns by adding rural health leaders to the .

Meanwhile, and Nebraska, some health groups are upset that their states’ plans lack specific funding streams for rural hospitals.

Lauren LaPine-Ray, who oversees rural health policy at the Michigan Health & Hospital Association, predicted the state’s rural hospitals will compete with other organizations, such as academic centers and health clinics, for funding. She said about 65% of the group’s rural members have never applied for a state grant before.

“The rural hospitals, the ones that really need the funding the most, will not be well equipped to apply for and pull down these dollars,” LaPine-Ray said.

Jed Hansen, executive director of the Nebraska Rural Health Association, said the federal funding won’t go to “rural hospitals, rural clinics, and rural providers in a meaningful way.”

“Rural Health Transformation will not save a single hospital in our state,” he said. “I don’t think it will save a hospital nationally.”

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Jamie Estrada of Albuquerque, New Mexico, twice received injections of lidocaine in his upper spine to test if a permanent nerve ablation would treat his chronic neck pain. His pain vanished — until the numbing agent wore off about six hours later. The real zinger: His insurer was billed $28,000 for each 10-minute procedure.

Mark McCullick of Longmont, Colorado, was sent for a whole-body PET scan to find out whether his prostate cancer was back. The two-hour scan showed no evidence of cancer, but the $77,000 bill sent to the company that administered his insurance alarmed him.

Medical inflation has general inflation for years, with bills for many brief, routine procedures reaching tens of thousands of dollars.

These cases highlight the questions that haunt the American health system and the patients caught in its grip: What is a reasonable price for any health care visit or procedure, and how is it determined? How hard do insurers, the purported stewards of the patient’s hard-earned health dollars, fight to lower charges, and how closely do they scrutinize bills for accuracy?

Smith, Estrada, and McCullick’s cases are all “chargemaster” bills, calculated from the master price list that health providers place on services. Patients who have insurance don’t generally pay them. But they matter because they are often the starting point for the negotiated price the insurer agrees is reasonable to pay for the services. Patients are typically responsible for 10% to 20% of the negotiated price, their coinsurance — and when prices are this high, that can be a big number. What’s more, those negotiated rates are difficult for patients to access (until they get the bill) and seemingly arbitrary.

Also, because health insurers can offset high outlays one year by raising premiums and deductibles the next, they have little incentive to bargain hard for good deals for the patients they cover. So patients all pay unknowingly, indirectly.

In the cases of Smith and Estrada, their insurers paid the majority without questions. Penn State’s Hershey Medical Center, which treated Smith, received $61,000, or 62% of what it charged. New Mexico Surgery Center Orthopaedics, which treated Estrada, received $46,000, or 82%.

McCullick’s insurer, on the other hand, said it would pay Intermountain Health just 28% of his $77,000 bill. Then came another curveball: The hospital, which said it had gotten preauthorization, discovered after the fact that his scan was not covered. So it billed McCullick the full chargemaster rate of $77,000 — or, it offered, he could pay the cash rate of $14,259.

In an emailed statement, Chris Bond, a spokesperson for AHIP, the leading trade group for health insurers, blamed hospitals for the trouble, saying that plans are “focused on making benefits and coverage as affordable as possible for their members,” and that: “As the largest single category per premium dollar spent, increases in the cost of hospital-based care have an outsized impact on premiums.”

In a health system in which prices can vary exponentially with little transparency, how can patients afford to get sick?

‘It Makes No Sense’

Americans as a top priority for government in 2026, according to an Associated Press-NORC poll, expressing particular concern about cost, access, and insurance coverage.

The first Trump administration required insurers and hospitals to publish files containing cash, gross, and negotiated prices for various items and services. These raw, machine-readable price lists — often hundreds of pages filled with medical billing codes — to patient-customers.

Five years later, they’ve been ingested, parsed, and enriched by academics and startups, shedding light on the often-shocking disparities in prices and how they’ve come to exist.

“When we look at the data, whether it’s from a chargemaster or what insurers paid, it’s all over the map — it makes no sense,” said Marcus Dorstel, senior vice president of operations at Turquoise Health, a price transparency startup with payers and providers as clients. “The variation is huge, even in a specific area.”

When researchers at the Johns Hopkins Bloomberg School of Public Health looked at the data, they discovered that the price different insurers pay for the same billed charges “can be three or more times different at the same hospital,” said Ge Bai, a professor of health care accounting who was among the researchers.

The prices insurers pay are determined by numerous factors, including what’s in their contracts with health systems. Some health plans, such as Smith’s, automatically pay a percentage of the hospital’s billed charges, incentivizing hospitals to increase their rates. Hershey Medical Center increased its prices for 11 common hospital billing codes by an average of about 30% from 2023 to 2025, Dan Snow, a data scientist at Turquoise Health, calculated for this article. But those prices were not much different than those of other hospitals in Pennsylvania.

In other cases, an insurer might agree to pay a health system a case rate — a standard rate for a type of care, say a colonoscopy or an inpatient stay for pneumonia.

But there’s a lucrative catch, called a “carve-out,” which refers to a particular benefit that’s negotiated and paid separately. If the hospital used expensive drugs or devices, for instance, they can be billed in addition to the bundled case rate, with no limits on hospital markups. That was the case with McCullick’s PET scan; about 80% of the charge was not for the scan, but for a new kind of drug injected before the scan to detect cancer.

Most often the final prices depend on the relative negotiating power of the insurer and the health system: Which side has enough market sway to walk away if the other doesn’t meet its demands?

Such factors “can explain the price variations and patterns that we see,” Dorstel said. “In some markets insurers are price-makers, and in others they are price-takers.”

For Insurers, Paying More Is Profitable

Insurers aren’t incentivized to lower prices, because high prices mean they “get a slice of a bigger pie,” Bai said.

By law, insurers must spend 80% or 85% of premiums on patient care. But when prices rise, they can pass on the increase to customers in the form of higher premium costs and still meet their legal obligation. So higher premiums mean less money for the patient and more profit for the insurer.

For each spinal injection Estrada received, his insurance company’s contracted rate was $23,237.50. Estrada’s coinsurance was $5,166.20. With a high-deductible plan, he was asked to pay all of that more than $5,000 bill.

When he called to challenge the big bill, he said, the surgery center’s administrator told him the charges were the result of a “legacy contract” with the insurer that is “advantageous” and “favorable” to the center.

New Mexico Surgery Center Orthopaedics’ charges are many times those of the hospital where the center’s doctors admit patients, for example; there, Estrada’s insurance company’s contracted rate for the same spinal injection is just $2,058.67. And compared with the roughly $20,000 the insurer paid for each of Estrada’s injections, other insurers pay the center about $700 for the same procedure, Snow found.

The surgery center is part of a national group that owns more than 535 surgical facilities, United Surgical Partners International, which in turn is owned by Tenet Healthcare, a for-profit health conglomerate. That kind of market dominance can lend companies the negotiating power to charge — and get paid — what they want, Bai said.

The surgery center, United Surgical Partners International, and Tenet Healthcare did not reply to multiple requests for comment from Â鶹ŮÓÅ Health News.

With charges prenegotiated, insurers have little incentive to scrutinize questionable bills. When Smith asked for an itemized bill for her surgery, she discovered that she had been billed for two surgeries: one for the ectopic pregnancy removal and another because the surgeon noticed signs of endometriosis and performed a biopsy. Both were billed at the contracted rate of $37,923.

She was livid at the charges, which to her seemed like double-dipping. “That was one surgery,” she said. “There was one incision.”

A Yale University-trained lawyer, Smith consulted the federal Centers for Medicare & Medicaid Services’ , which note the two billing codes used for her surgery generally can’t be “billed together for the same patient encounter” because one more or less is bundled with the other.

Smith said she reached out to the Penn State hospital, the insurer, and even the state attorney general without resolution. So she expects she will, reluctantly, have to pay the $5,250 coinsurance that the hospital and insurer say she owes.

In response to questions from Â鶹ŮÓÅ Health News, Scott Gilbert, a spokesperson for the health system, did not respond to the specifics of this case, but wrote: “Penn State Health recognizes that health care billing can be confusing and often overwhelming for patients. The process involves many factors, including the type of care provided, where it’s delivered and the details of a patient’s insurance coverage.”

A ‘Reasonable’ Price?

After a reporter sent multiple inquiries to Intermountain Health, McCullick said an agent asked him what would be “a reasonable amount to resolve the situation.”

Sara Quale, a spokesperson for Good Samaritan Hospital, the Intermountain affiliate where he got the PET scan, wrote: “We sincerely regret the frustration this situation has caused Mr. McCullick,” noting that “we have been in consistent contact with him and will continue to follow up as needed.”

McCullick said he wants to pay his fair share but is still trying to figure out what that is — certainly less than the different self-pay prices he’s been offered, which all top $10,000. “The fluid nature of these numbers is mind blowing,” he wrote in an email.

As for Estrada, he was so angry that he decided not to go ahead with the nerve ablation. While he was being prepped for the procedure, Estrada recalled, the physician said he had “heard he might sue” and chastised him for being a troublemaker. The hospital did not respond to a request for comment on the allegations, and Estrada said he had never threatened legal action.

Estrada got off the table and put his shirt back on. “I’m not going to let this person put a big needle into my back.”

Bill of the Month is a crowdsourced investigation by and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? !

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