But behind the house, the 44-year-old’s backyard garden showcases her goals for the future, one that involves a long, healthy life with her kids: collard greens, bell peppers, onions, tomatoes, red and white potatoes, kale.

Like Lowery, many in the small towns of Lumberton and nearby Pembroke are citizens of the Lumbee Tribe who have dealt with heart conditions. The mother of four struggled with obesity and had to take insulin pills and shots daily. By when her first grandchild was born, in 2024, Lowery imagined her own life ending the way her biological father’s did: Daily insulin shots for diabetes. Kidney dialysis treatments at home. Dead of a heart attack at 63. She wanted her grandkids to remember her.

“If I don’t get this weight off me, if I don’t change my eating habits, it’s going to take me over,” she recalled thinking.

So, she expanded her garden. She cut fatty foods and sugary drinks out of her diet, stopped eating fried and fast food, and started moving more. She lost 120 pounds in two years and weaned herself off the daily insulin pills.

The Lumbee Tribe of North Carolina late last year became the 575th tribe to secure federal recognition as a sovereign nation, a milestone that leaders and citizens celebrated in tears. The designation provides federal funding for an array of services, including for healthcare. , chairman of the tribe and a state representative, “the biggest benefit” would be access to the Indian Health Service — its clinics and hospitals, as well as funding that it could provide for the tribe to .

But Lumbee researchers and healthcare providers say that money won’t be enough. For decades, IHS has been , with the agency’s budget workgroup estimating that of what it needs this year. And that was before the Trump administration’s cuts to other federal agencies further pinched IHS. Slashes to the Centers for Disease Control and Prevention last year initially included laying off nearly , and President Donald Trump’s proposed 2027 budget cuts more than $150 million for a in Native American tribes.

The nearest IHS facility is more than a two-hour drive to another state for most of the 55,000 Lumbee citizens in Robeson County. The county is one of the and has some of the .

The Congressional Budget Office in 2022 estimated that the tribe could increase IHS spending by .

The tribe will have to rely on other revenue sources that are now allowed through recognition, such as a casino, to reverse the health disparities their people have faced for decades, Lumbee researchers said.

“None of us can depend on IHS alone, because we just don’t have the resources within that system,” said , a physician, a researcher at the Johns Hopkins Center for Indigenous Health, and a member of the Oglala Lakota tribe. “But it’s a great starting point.”

The IHS did not respond to questions about plans for the tribe’s health system. John Lowery did not respond to requests for an interview or a list of questions, but he said on a June podcast that he expected healthcare to be the .

‘Not Just Statistics’

Eighteen years ago, , a doctor in Lumberton and a citizen of the tribe, was working at a nearby medical center. There, she said, she was taught that patients with certain last names “are often referred directly to cardiac catheterization,” a procedure to diagnose heart conditions.

Blackburn said she realized that common Lumbee surnames carried an expectation of disease.

“Nearly two decades later, I can tell you that reality has not changed,” she told assembled tribal leadership and citizens at a public hearing.

Robeson County’s rates of heart disease, diabetes, and continue to rank among the highest in the state, Blackburn noted. In 2025, were Medicaid enrollees, the highest percentage of all counties in the state.

“But these are not just statistics to me,” she said. “These are my patients. These are our families.”

For Angie Lowery, breaking free from those statistics meant taking her health into her own hands.

She hopes a healthy diet is the answer to breaking her family’s cycle and living long enough to form relationships with her grandkids. And she brought the rest of the family with her. Her teenage daughter lost about 35 pounds. Two of her other children are now “health fanatics,” Lowery said.

Her granddaughter will be 2 in November. One Sunday morning in March, Lowery served up macaroni, cauliflower, and chickpeas for her as they spent the day together.

Lowery had supported building a casino, believing it would provide better education, infrastructure, and healthcare for her family.

“That vote, I’m thinking of my children’s future,” she said.

Casino Dreams in Limbo

Tribal citizens are deeply divided over how to reverse decades of economic decline that have led to poor living conditions, unaffordable health services, and chronic disease.

Four months after Trump signed the Lumbee Fairness Act — “I love the Lumbee Tribe” — tribal leaders gathered at a business meeting to take the first steps toward building a casino and establishing gaming as a new revenue source. Hundreds of federally recognized tribes across 29 states have used gaming as a source of revenue, in fiscal 2024, according to the latest report from the National Indian Gaming Commission.

The approach has been popular among tribal nations looking for more dollars to build up healthcare. The Choctaw Nation of Oklahoma in 1999 to build its own hospital, using roughly $25 million in gaming money, and the Eastern Band of Cherokee Indians in western North Carolina funded its own hospital in 2015 mostly with $82 million in gaming funds.

But the Lumbee Tribe’s effort to establish a casino collapsed in June.

rejected a Lumbee constitutional amendment that would have allowed tribal leaders to create infrastructure needed for a gaming business. John Lowery said that he doesn’t plan on bringing back the initiative now that it was rejected “by the majority of Lumbee voters.” His term as chairman ends in two years.

Other funding sources to provide health services for the tribe could include gas stations or hotels, he said in a call with citizens before the vote.

Lumbee and other Native health researchers said they believe a twofold system — using IHS money and additional revenue — is necessary. Funds from gaming could compensate for what IHS can’t support.

Casinos’ impact on tribal health has been debated in research for decades. that the money from gaming helps tribes build more facilities, hire more doctors, and improve social services, but unhealthy substance use and smoking increase.

“There’s going to be negative impacts,” , a social work professor at the University of North Carolina and citizen of the Lumbee Tribe, said at a June panel discussion on gaming.

, 62, a Lumbee citizen and a researcher studying Native health at UNC, said the community has felt ripple effects from systemic racism, having not been acknowledged as a tribal nation for so long, and the economic downturn following the loss of Robeson County’s manufacturing and tobacco jobs.

That history plays a part in the health statistics in Robeson today, Bell said. But with federal recognition, he said, the Lumbee people have achieved a victory they’ve fought for since 1888.

“I think about the resilience of the Lumbee people and how they’ve gone through this 100-plus-year fight for federal recognition,” Bell said. “I sort of see that as a continuation of this resilience, and how now we have this opportunity with federal recognition to bring in resources to help address those issues.”

Resolution and Uncertainty

Jada Brooks, a Lumbee citizen and UNC researcher who studies Indigenous health and lives in Robeson County, is conducting a study about heart health among Lumbee women. The initiative includes classes in which Lumbee women ages 18 to 50 signed up to discuss their health. That’s where she met Angie Lowery, who talked about her lifestyle changes with the group.

“I was just floored by, like, just the extent to which she went,” Brooks said.

She and other Lumbee researchers said federal recognition allows Lumbee citizens to be set apart in census data, paving a way to get clear information on heart health, cancer rates, diabetes diagnoses, and mental health risks.

“There’s challenges in even understanding the nuances of these complex health disparities, because a lot of data isn’t out there,” said Ryan Dial, a public health researcher at UNC and a member of the Lumbee Tribe.

But access and confidence may be the biggest barriers Lumbee people will have to overcome, Brooks said.

“I think what really matters is people feeling like they can trust the healthcare system.”

Brooks said she worried that a casino would encourage bad health habits, such as smoking and drinking.

“Let’s not create more problems for ourselves than we already have,” she said. She voted against the casino.

Like others in the tribe, Angie Lowery believes in her people’s power to help themselves, regardless of whether government steps in to help.

“Just because we’re federally recognized don’t mean that the doors are going to open up and money’s going to fall through the door like dirt,” she said.

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

The officials, all Democrats, are running at a time when the Trump administration is reducing government funding for scientific research, restricting access to some vaccines, and making it more difficult for some Americans to obtain health insurance.

Shaughnessy Naughton, president of 3.14 Action, a political action committee that recruits Democratic candidates with science and health backgrounds, said it is unusual to see so many public health leaders running for office.

“But it’s not surprising given the moment we are living in, with an arsonist running HHS working to undermine the vaccine schedule and public health at large,” she said.

Health and Human Services Secretary Robert F. Kennedy Jr. is a longtime anti-vaccine activist who disparaged public health measures implemented during the pandemic, going as far as calling the covid vaccine the “.”

Neither HHS nor the White House responded to requests for comment.

Several of the candidates benefit from name recognition built during the covid pandemic, political science scholars say, when daily news briefings from local health officials became must-see-TV for many citizens sheltering in place from the novel virus. But that cuts two ways.

While many Americans regarded public health officials as offering prudent advice and a steady voice, others criticized them for pushing school closures, mask mandates, and new, quickly created vaccines. The attacks have escalated under President Donald Trump, with Republicans targeting pandemic-era public health leaders such as Anthony Fauci and a former Fauci adviser even facing .

National polls show healthcare is for many voters this year, with Democrats most worried about costs and Republicans about fraud. But that’s no guarantee of victory. Nirav Shah, an epidemiologist who led Maine’s top public health agency through the pandemic, lost a narrow Democratic primary in the state governor’s race in June.

Here are some of the public health officials on the ballot this year:

Xavier Becerra, Running for Governor in California

Becerra, who served as HHS secretary under President Joe Biden, is the highest-ranking former health official running this cycle. He won a crowded and expensive open primary and now faces Republican Steve Hilton, a British-born former Fox News host, in the general election.

Mark Peterson, a public policy professor at the UCLA Luskin School of Public Affairs, said with the pandemic in the rearview mirror, any judgment voters may have about the federal government’s response is more likely to reflect on Biden rather than Becerra, who has no medical background and maintained a low profile as HHS secretary.

Leading the nation’s health department as the pandemic lingered, Becerra focused more on expanding access to the Affordable Care Act and Medicaid, overseeing record numbers of people enrolled in the publicly financed programs during his tenure. He did face criticism over the processing and placement of a massive influx of migrant children at the U.S.-Mexico border, as well as his agency’s response to a baby 51ÊÓƵ shortage brought on, in part, by major product recalls.

Becerra has said he now wants to be California’s “healthcare governor,” a mantle outgoing Gov. Gavin Newsom tried to claim upon taking office in 2019.

Becerra’s campaign did not respond to a request for comment.

Before becoming HHS secretary, Becerra served as California’s attorney general and sued the first Trump administration more than 100 times, leading a coalition of states against GOP efforts to gut the ACA. He also started a unit in his office focused solely on healthcare. During Becerra’s tenure, his office reached a $575 million antitrust settlement with the California hospital system Sutter Health, pursued pharmaceutical companies that delayed generic drugs, and helped block a Trump administration rule that let employers choose whether to cover .

Voters often regard decades of experience in government as a negative, Peterson said. But for the job of running the nation’s most populous state and the world’s fourth-largest economy, he added, “I think there are a lot of people out there who would like to have somebody who actually has run a big enterprise.”

In , Becerra has said California should maintain state-funded Medicaid coverage for immigrants without legal status. He is also a longtime supporter of implementing single-payer healthcare, though in recent interviews he has said it needs to be addressed at the federal level.

Amy Acton, Running for Governor in Ohio

Acton ran Ohio’s health department from February 2019 to June 2020.

During the first months of the pandemic, Acton appeared at daily news conferences with the state’s Republican governor, Mike DeWine, that were jokingly dubbed “.” She earned fans with her calm and positive demeanor while explaining her approach to keeping covid at bay.

But she also attracted critics with her recommendations to stay at home, mask up, and shut down some businesses to curb the virus’ spread. Protesters even showed up at her home.

Acton’s Republican opponent in the governor’s race, Vivek Ramaswamy, has labeled her “Dr. Lockdown” on social media. His criticism of her role in shutting down businesses could prove effective with the economy at the top of many people’s minds, said Christopher Devine, a University of Dayton political science professor.

“It’s a double-edged sword, because she also really upset some people,” Devine said of Acton’s time as the health director during the pandemic.

He said that is a tricky attack for Ramaswamy to pursue, though, because DeWine — still the sitting governor and a popular conservative figure — endorsed the covid measures Acton recommended, granting her emergency powers to sign the orders, and has since said he takes all responsibility for those actions.

For her part, Acton has done little on the campaign trail to highlight her time as the state’s public health director. Instead, she has focused more on healthcare affordability, highlighting the Trump-led cuts to Medicaid and the scaled-back subsidies for ACA plans that have resulted in dropping coverage in the state.

“I hear from families across Ohio that healthcare costs are rising and they just can’t keep up,” Acton said in an emailed statement. “That’s why I will fight to protect and expand access, reduce the price of prescription drugs, forgive medical debt holding Ohioans back, and lower premiums.”

Abdul El-Sayed, Running for U.S. Senate in Michigan

El-Sayed — who ran the health departments in the city of Detroit and Wayne County, Michigan — is one of two leading Democratic candidates for Senate. The primary is Aug. 4.

El-Sayed, a progressive, is facing off against Haley Stevens, a four-term congresswoman. They are vying to run against Republican nominee Mike Rogers, a former congressman, for the Senate seat held by retiring Democrat Gary Peters.

From 2015 to 2017, El-Sayed ran the Detroit Health Department, which and privatized as part of the city’s 2013 bankruptcy. In his role, he led efforts to test Detroit schools for lead in the wake of the Flint water crisis and provide free eyeglasses to children in public schools.

From 2022 until 2025, he ran the health department in Wayne County, the state’s most populous county, which includes Detroit. In that job, he initiated a program to retire medical debt for thousands of residents and make naloxone available in public areas to reverse the effects of opioid overdoses.

In an interview with 51ÊÓƵ Health News, El-Sayed said his public health experience helped him become an effective communicator and challenge corporations and the role they play in healthcare.

“Politics have become overrun by big money and corporations, and my training and background in public health has taught me to think about that and push back against it,” he said.

El-Sayed, who did not practice medicine after completing his residency and is not licensed to do so, has faced criticism from some in his party for calling himself a doctor.  

El-Sayed, who has endorsements from Sen. Bernie Sanders (I-Vt.) and U.S. Rep. Alexandria Ocasio-Cortez (D-N.Y.), supports “Medicare for All,” a policy favored by many progressives that would make more people eligible for the federal health program for people who are 65 and older or disabled.

David Dulio, a professor of political science at Oakland University in Rochester, Michigan, said that the broader economy, Trump’s tariffs, and trade are eclipsing healthcare this year as top concerns for voters in the state. But he added that “progressive stances such as Medicare for All are attractive in the Democratic primary electorate.”

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

The race is in Iowa, whose Medicaid program has been plagued with controversy since 2016, when the state hired national insurance companies to manage billions of dollars’ worth of benefits.

That shift was made by then-Gov. Terry Branstad, a Republican. With his executive order, Iowa joined most other states in privatizing the management of Medicaid, which covers healthcare for more than 67 million Americans with low incomes or disabilities.

The arguments have resurfaced this year during the competition to replace Republican Gov. Kim Reynolds, who was Branstad’s protégé and continued contracting with private companies to manage Medicaid benefits. Zach Lahn, the Republican candidate to succeed the retiring governor, supports the practice. Rob Sand, the Democratic candidate, wants to end it.

“It’s been a disaster,” said Sand, Iowa’s state auditor. “The number of complaints has been catastrophic.”

Pros and Cons

Supporters of privatization say the insurers, known as managed-care organizations, make Medicaid more effective and efficient. Critics contend the companies pad their profits by denying payment for crucial health services and by shortchanging agencies and professionals who provide care.

Iowa is among 41 states, plus the District of Columbia, that contract with outside companies to run at least part of their Medicaid programs. Overall, private insurers manage the benefits of more than three-quarters of Medicaid patients. Connecticut is the only state that has fully reversed course after privatizing its Medicaid system.

Sand has criticized privatized Medicaid for years. As state auditor, he alleging that the national insurers systematically deny or delay payment for services to which Medicaid participants are entitled.

He has vowed not to renew state contracts with the three insurers managing care for more than 600,000 Iowans on Medicaid, which is jointly financed by the state and federal governments. He would rather have state employees or nonprofit agencies review and pay bills from clinics, hospitals, and other healthcare providers.

Lahn told 51ÊÓƵ Health News that Sand’s pledge to resume state administration of Medicaid “is the exact wrong idea.”

Lahn is a former activist for Americans for Prosperity, a national pro-business group affiliated with the Koch family. He contends that state governments and Medicaid participants benefit when insurers compete to serve them.

“There are very few things that government does more efficiently than the private sector,” he said.

Lahn, who is a businessman and farmer, emphasized that state officials should strictly enforce contract requirements, ensuring that the insurers treat Medicaid recipients fairly and make prompt payments to care providers. He also said he would bar insurers from using artificial intelligence systems to determine whether to pay for medical claims under Medicaid. “Iowans deserve to have a human looking at their case,” he said.

Sand said in a recent interview that he doesn’t want Iowa to fully return to a “fee-for-service” Medicaid system, in which hospitals, clinics, and other healthcare agencies would effectively be paid piecemeal for whatever services they provided. Instead, he said, state employees or nonprofit organizations could take over operation of a managed-care system, in which administrators review services to help ensure Medicaid participants receive what they need without wasting public money on ineffective services.

A few months ago, Republicans controlling the Iowa Legislature considered a bill to require the state to have a privately managed Medicaid system. That proposal would have blocked future governors from unilaterally shifting back to public management of the program. But the bill

Sand, a former assistant state attorney general, said he is confident he would have legal authority as governor to stop contracting with private Medicaid managers, although he cautioned that the transition would be complicated and could take time.

A Toss-Up Race

National political observers say the Iowa governor’s race

This June, Lahn won an underdog primary campaign to beat a sitting congressman backed by President Donald Trump. Lahn gained Trump’s endorsement after winning the Republican primary. He is a vocal supporter of the Make America Healthy Again movement, led by Health and Human Services Secretary Robert F. Kennedy Jr., which aims to improve Americans’ diets and reduce environmental poisons.

Sand noted that Lahn’s past political activism included a failed 2014 attempt to defeat a proposal to cover more people under Montana’s Medicaid program.

Lahn said that at the time he worried the federal government would reduce how much money it would contribute to such Medicaid expansions, leaving states to foot much of the bill. He said he also didn’t want to see public programs such as Medicaid giving benefits to adults capable of providing for themselves. But he said those concerns have been allayed, partly by the Trump administration’s moves to require millions of Medicaid recipients to prove they are working, volunteering, or going to school.

If elected governor, he said, he would not try to reverse Iowa’s expansion of Medicaid, which happened in 2014 under Branstad.

Branstad also is the governor who decided in 2016 to hire private insurers to manage Medicaid.

Branstad, who declined to comment for this article, did not need the legislature to approve his momentous decision. He weathered controversy over the change, including allegations that the companies systematically denied payment for care that people with disabilities needed to remain in their homes.

Andy Schneider, a who studies health policy issues, said it’s understandable that many government leaders see an advantage in hiring private Medicaid management companies. Each state’s Medicaid program pays claims for hundreds of thousands or even millions of members, and administrators must scrutinize bills from thousands of hospitals, clinics, and other healthcare organizations. “That’s a heavy lift,” said Schneider, who worked in federal Medicaid administration when Barack Obama was president.

Schneider noted that Medicaid expenses are among the biggest parts of any state’s budget. The costs can vary dramatically year to year, he said, which is hard for legislators and governors to plan for. Management companies sign contracts for set amounts of money per enrollee, depending on people’s ages and health conditions. Managed-care companies say they can improve Medicaid members’ health and reduce expenses. But Schneider said have been unable to confirm or disprove those claims.

Federal law gives states flexibility in how they run their Medicaid programs, including whether they hire private insurers to manage the programs. “Unwinding those arrangements might take a little time, but there’s no question they can do it,” Schneider said.

Connecticut of private insurers to run Medicaid in 2012. to contract only with nonprofit insurers, starting in 2025, and that state’s governor doing away with private management altogether.

Gary Jessee, a former Texas Medicaid director who helped transition that state’s program into managed care, noted that most Americans’ health coverage is managed by some kind of insurance company, whether they obtain it on their own or get it through a government or employer plan.

Jessee now helps run a whose clients include Medicaid managed-care companies. He said states rarely talk about totally scrapping contracts with such companies. Instead, he said, states have options to change the contracts, including to increase oversight or limit profits.

Overall, Jessee said, managed-care companies help Medicaid enrollees obtain the services they need to stay healthy. But it’s hard to calculate how much money the companies save states, he said, because all healthcare costs have been rising, and new members of managed-care plans may at first use more services as the insurance companies encourage them to get regular checkups instead of waiting for emergencies.

Iowa’s Medicaid program is managed by three insurers: Molina Healthcare, Elevance Health subsidiary Wellpoint, and Centene subsidiary Iowa Total Care.

None responded to requests for comment for this article.

Catherine Gray of Des Moines helps run a Facebook page for families who use Iowa’s Medicaid system. Her adult son, John, is on Medicaid because of a disability. Gray said the managed-care companies have made it much harder for people to obtain services, including mental healthcare, dental care, and transportation to health appointments. Iowa’s shift to the private system was abrupt and chaotic, she said. “We know people have died,” she said.

Gray said she probably will vote for Sand for governor, even though she doesn’t agree with every nuance of his stance on Medicaid. She suspects many other Iowans who use the program will do the same. “They’ve really been put through the wringer for 10 years, and they’re exhausted.”

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

Time is precious for him. Last year, doctors told the 76-year-old former truck driver that a combination of heart failure, lung disease, and liver damage had left him with only six months to live. “That was about 11 months ago,” Vantrease said in a May interview, smiling at having, for the moment, cheated death.

In June 2025, Vantrease began hospice, which focuses on quality of life for terminally ill patients, receiving regular visits from a nurse in his home in Novato, California. Medicare is covering those services for him. His hospice caregivers reminded him of the attention his unit received from medical staff in Vietnam.

“We used to call them guardian angels,” he said, “because they took such great care of you.”

But the Trump administration’s allegations of unchecked hospice fraud in California have tainted the industry’s reputation, prompting concerns that fewer patients will seek the care they need. Health policy researchers and hospice administrators worry that the negative attention on the industry and potential for overly punitive regulations could put California patients and taxpayers on the losing end.

“The fraud situation has done a lot of damage to the reputation of hospices overall and undone a lot of the progress that had been made in destigmatizing hospice,” said Lauren Hunt, an associate professor at the University of California-San Francisco’s Philip R. Lee Institute for Health Policy Studies who focuses on hospice care. “Policymakers should pursue targeted strategies that root out fraud and abuse without overburdening the many providers who are doing the right thing.”

Hospice care is facing sweeping restrictions. The Centers for Medicare & Medicaid Services in May announced a six-month national moratorium on hospice provider enrollment in Medicare and increased oversight in California and several other states with “elevated fraud risk”: Arizona, Georgia, Nevada, Ohio, and Texas.

In a statement, CMS spokesperson Timothy Foster said state inaction on hospice programs rife with fraud drove the need for federal intervention. Foster said CMS believes the crackdown won’t affect patients’ ability to obtain services, with roughly 7,000 hospices still approved nationwide, and that it will help ensure the hospices that remain provide the care “individuals near end of life deserve.”

“Ensuring patient safety and access to quality hospices and other certified healthcare services is paramount to CMS’ work,” Foster said.

Mehmet Oz, the CMS administrator, has said also protects taxpayer money. that even as for-profit hospices have expanded, the industry has saved Medicare money by offsetting other expensive care. A 2023 University of Chicago report commissioned by industry associations estimated that Medicare patients who used hospice over hospitals in 2019 .

California has already been cracking down on the problems, with Democratic Attorney General Rob Bonta deeming hospice fraud an “” last year and asserting that The state has had its own since 2021, with crimes over the years, and implemented to curb fraud this June.

Hunt said she’s heard from California healthcare providers who are reluctant to refer patients to hospice because they’re unsure the patients will receive high-quality care and from patients who don’t know which hospice providers they can trust. California hospice organizations of any state — as of 2022, according to the California state auditor’s office. That same year, CMS nationwide.

Hospice administrators in good standing have already found themselves in the crosshairs: A found that the federal government’s new anti-fraud task force has already suspended licenses for 43 legitimate hospices.

Still, Hunt and other policy researchers welcome the efforts to target unscrupulous operators.

“While most hospices are committed to providing high-quality care, there are serious concerns about a subset that exploit patients and the system for financial gain,” she said.

The hospice industry is uniquely vulnerable to fraud because of insufficient licensing regulations and inadequate oversight, according to industry researchers. And the percentage of the population aging into Medicare is rapidly rising, with spending expected to accelerate in the next 10 years.

Most of the rapid growth in operators has been among for-profit hospices, a state auditor’s report in 2022 noted. In California, about 94% of hospice providers are now for-profit, a shift from 20 years ago, when nonprofits in California and nationally. On average, for-profit operators per patient in pretax profit and $49 more per patient-day than nonprofit hospice operators, according to one study.

Skelly Wingard, CEO of By the Bay Health, a Northern California nonprofit that provides services to Vantrease, acknowledges that fraud is a big problem in the industry. “These organizations that have exploited patients were extremely savvy,” she said.

But Wingard warns against losing sight of the bigger picture.

“Hospice, when done well, is one of the most compassionate and meaningful benefits in healthcare,” she said. “We should be working to protect that, not inadvertently erode confidence in it.”

By the Bay Health has been in business for 50 years and serves around 750 hospice patients in the Bay Area. About 89% of them are covered by Medicare, 3% by California’s Medicaid program, Medi-Cal, and the rest by commercial health plans, Wingard said.

At home in Novato, Vantrease lifts his shirt to show where a catheter was surgically implanted to drain uncomfortable fluid buildup in his abdomen. The hospital trained his wife, Paula Vantrease, a retired career counselor, to connect a suctioning device to the catheter to siphon the excess fluid. A hospice nurse from By the Bay, Blake Knier, helped her master the technique the first few times she tried it at home.

“Paula is the rock in my foundation,” Mark Vantrease said.

Knier orders all of Vantrease’s medications and rejiggers them when necessary to manage his bouts of intense nausea and pain. Every week, Knier checks the surgical incision around the catheter for infection, listens to Vantrease’s lungs, checks his blood pressure, and cleans and dresses the open wounds that sometimes form from burst blisters on his legs, a complication of the fluid buildup and weakened skin.

Knier helps usher hospice patients and their families through critical turning points. He recalled guiding one patient’s daughter through her mother’s loss of appetite.

“It’s OK if your mother isn’t eating vegetables,” he told the patient’s daughter. “Let her eat ice cream, if that’s what she wants.”

California’s emergency regulations against fraud took effect in late June. In addition to tighter prescreening of license applicants, they call for minimum professional qualifications for management, higher nurse-to-patient ratios, stricter rules around physical office space, and other restrictions.

Hunt said the new regulations are a step in the right direction but urged caution.

“The broader impact on the industry should be closely monitored, particularly to ensure that well-intentioned, high-quality providers are not placed under undue strain or forced to close,” she said.

Late one night last year, when Knier wasn’t available, another hospice nurse from By the Bay Health came promptly to the Vantreases’ home in response to an urgent call from Paula.

“I felt like I was about to die,” Mark Vantrease said, explaining he’d just had a premonition that he wouldn’t wake up in the morning. His sons were called to his bedside. The family needed reassurance. So a nurse arrived, examined him, and checked their father’s vitals.

By midnight, he was sleeping.

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

Now, the same pain had returned — on the left.

This time, Rangel was in the U.S. and lacked health insurance. In 2019, he moved to Portland, Maine, where one of his daughters lives.

As a green-card holder, he qualified to purchase health insurance through the Affordable Care Act marketplace. But he quickly realized that the premiums for someone his age were beyond his budget. He decided to go without insurance, even though it had been a priority for him.

Instead, Rangel signed up for a plan at a concierge practice where patients pay as little as $70 a month for services, including unlimited office visits and minor procedures such as stitches and biopsies.

But when Rangel was diagnosed with a hernia, surgery became unavoidable. Ben Hagopian, his primary care physician, helped him compile a list of hospitals and surgical centers to consider. Rangel has a PhD in management, a field he pursued while serving in the navy in Venezuela. Armed with that knowledge and a naturally inquisitive mind, he began researching prices.

His efforts paid off when the bill came.

The Medical Service

Rangel had what is called an , which occurs when the contents of the abdomen bulge through a weak spot in the lower abdominal wall. The condition is relatively common, particularly among older adults.

In most cases, surgery is required to fix the muscle wall and can be performed . There are three main surgical approaches to repair an inguinal hernia: open, laparoscopic, and robot-assisted. Studies have shown that the three approaches have similarly low rates of hernia recurrence and are .

Rangel underwent an open repair, an approach often preferred by physicians for recurrent hernias. He said his operation lasted less than two hours, and he walked out of the surgical center shortly afterward.

The Bill

$2,900: The flat rate Rangel ultimately paid for his hernia repair at an outpatient surgery center in Maryland, including the surgeon’s fee and anesthesia. He said he also paid around $1,800 to travel to the surgery center from his home in Maine, including airfare, meals, and lodging for him and his wife.

The Billing Problem: No Insurance — But Time To Shop

Because Rangel did not have insurance, he had no protections from high costs — except time and his ability to shop for an acceptable price for his procedure.

Rangel’s first stop was a nonprofit hospital close to home. He scheduled a consultation with a surgeon with MaineHealth, the state’s largest health system, and received an estimate showing it would cost approximately $23,000 to repair his hernia laparoscopically.

Laparoscopic procedures generally cost more because surgeons use more advanced tools. Still, the average laparoscopic inguinal hernia repair costs nearly twice as much at a hospital as it does at an ambulatory surgery center for a patient , which pays $5,280 for the hospital-based option.

“I wasn’t going to mortgage my life just to have surgery and spend the next 30 years paying off the debt,” said Rangel, now 64.

So, he kept shopping. He considered a surgical center in Oklahoma that was far cheaper, but he ultimately ruled it out because it was so far away. He also explored traveling to Universidad de los Andes in Santiago, Chile, where another of his daughters lives. There, his hernia repair would have cost about $7,000, but once he added thousands of dollars in travel expenses, that option no longer made financial sense.

Gerard Anderson, a professor who analyzes healthcare spending at the Johns Hopkins Bloomberg School of Public Health, said patients without health insurance are often the ones hit hardest by wide price variations.

A closer look at any hospital bill helps explain why. “Every hospital is different,” he said, “but generally about half of the total charge is the facility fee,” a charge added to hospital care to help cover overhead costs.

Anderson said hospitals often mark up prices far more than smaller facilities do.

Medical billing researchers say the price gap between hospitals and ambulatory surgery centers partially reflects the higher overhead costs of operating a hospital.

Hagopian, Rangel’s physician, acknowledged that hospitals have higher administrative expenses. “But that doesn’t explain the high costs.”

MaineHealth declined to comment to 51ÊÓƵ Health News, directing questions about the hospital-based procedure’s cost to Jeffrey Austin, president of the Maine Hospital Association.

Austin said that, unlike surgery centers, hospitals must absorb the costs of providing “money-losing” services, such as behavioral healthcare and care for Medicaid patients. He added that revenue generated by large hospitals in a health system supports other facilities, improving access to care.

Hospital prices, which can vary widely, are also driven by negotiations with insurers and market concentration. For uninsured patients, those list prices can become the starting point for negotiations — or the full amount owed.

Anderson noted that standardized payment rates exist for Medicare and Medicaid but not for most privately priced medical services. “In the private sector, providers can charge whatever they want.”

The Resolution

Rangel has another daughter in Argentina, a son in Venezuela, and other family in Spain. But he decided to stop looking around the globe for a good price, because he finally found what he was looking for in Maryland.

In April, he traveled to the Affordable Hernia Surgery center in Rockville, where he said “an efficient, well-coordinated system” guided him through the entire process.

“I received professional and very human care,” Rangel said. He was fully recovered within two weeks, as his surgeon predicted, he said.

The surgery center charged Rangel a flat fee for his hernia repair. The added travel expenses for the two-day trip with his wife went toward airline tickets, transportation, meals, and one night in a hotel.

Rangel said he paid about $4,700 total.

Alan Kravitz, the surgeon who performed Rangel’s operation, said the price difference uninsured patients face compared with insured patients is far from fair. “In the predatory and strategic world of U.S. healthcare pricing, uninsured patients generally get charged more than providers would accept from Medicare or commercial insurance.”

Kravitz then pulled out an estimate another patient had received for an inguinal hernia repair from a different large health system. The price: $37,000.

The Takeaway

Without insurance, many patients are on their own to negotiate.

“With the help of their primary physicians, patients can dig into prices and compare their options to avoid falling into medical debt,” Rangel said.

That approach, however, is most feasible for elective procedures with several surgical options offering comparable outcomes.

Patients facing medical emergencies do not have the luxury of comparing prices before seeking care, though many hospitals offer cash-pay discounts or charity care for those paying without insurance.

Billing analysts say patients who do have time to shop should look beyond cost alone. They recommend checking the quality of hospitals and surgical centers by reviewing publicly available ratings and patient reviews. that higher prices do not necessarily translate into a better quality of care, but it’s also important to select a reputable care provider.

Comparison shopping for medical care can be time-consuming. But for patients facing elective procedures, the effort can pay off — sometimes saving thousands of dollars.

“This was a learning experience for me,” Rangel said, “and I hope it will be for other people, too.”

Bill of the Month is a crowdsourced investigation by 51ÊÓƵ Health News 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? Tell us about it!

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

The federal government is capping the amount graduate students can borrow. The Department of Education says the new rules are designed to help curb student debt and pressure schools to lower tuition. But some loan experts fear those good intentions could leave many at the mercy of private lenders with higher interest rates. Saddling healthcare graduate students with pricier debt burdens can narrow their career choices.

51ÊÓƵ Health News correspondent Lauren Sausser joined WAMU’s Health Hub on July 22 to explain how the loan caps could make healthcare provider shortages worse or compromise the diversity of the workforce. Plus, she discusses how some states are pushing back against the new rules.

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

The Consumer Product Safety Commission, responsible for tracking and issuing recalls of dangerous products sold in the U.S., began discreetly pressuring hospital executives this year to share personally identifiable health data with a private contractor. But hospital lawyers and other industry experts have questioned the agency’s authority to collect, its ability to safeguard such a swath of sensitive information, and whether it has followed the legal process to overhaul its surveillance system.

After 51ÊÓƵ Health News asked the CPSC about the new system, the the program on July 21. Left unmentioned, however, is the alarm it has raised among hospital executives, as well as the nature and extent of the agency’s data demands.

In a stark departure from its product-focused mission, the agency’s goal is to obtain millions of Americans’ medical records from emergency room visits for most injuries, from a broken bone to a childhood vaccine reaction or even a suicide attempt, according to documents and emails obtained by 51ÊÓƵ Health News, as well as interviews with five people involved or familiar with the discussions.

A CPSC official also insisted in the emails that the institutions provide all ER patients’ identifiable information — such as names, addresses, diagnoses, and other personal details — to the contractor, Konza Health, for analysis. In correspondence with , Konza representatives described participation as “mandatory” or “required.”

As a condition of viewing the correspondence, 51ÊÓƵ Health News agreed not to republish some of the emails it obtained.

The CPSC wants at least 100 hospitals to start sending detailed medical records by the end of this year, according to an .

“The whole thing is troubling,” said Sharona Hoffman, a professor of health law at Case Western Reserve University who noted that giving a private entity access to a sweeping collection of data will introduce risks to patient privacy. “If this company really is collecting identifiable information, that is worrisome for patients.”

The new project was launched amid upheaval at the traditionally independent agency, which is without a governing board since President Donald Trump fired the CPSC’s three Democratic board members. Nearly 1 in 5 career staffers left the CPSC in the first 16 months of the new administration, according to a 51ÊÓƵ Health News analysis of federal workforce data.

The initiative also comes as the Trump administration has sought unprecedented access to millions of Americans’ medical records, with the Office of Personnel Management requesting federal workers’ sensitive health information and Health and Human Services Secretary Robert F. Kennedy Jr. using a private organization to collect more medical records for his studies on vaccines and autism.

Steve Roney, CPSC spokesperson, said in an emailed statement on July 10 that the CPSC is “modernizing” its surveillance system. Asked whether the CPSC will file complaints against hospitals that do not participate, he said only that while the previous system “operated as a voluntary program, the ability of hospitals to opt out limited the sample size and usefulness of the data.”

Roney also acknowledged that the agency had not yet notified the public, as “required by law.”

Federal law requires the agency to provide notice and a public comment period before requesting information from 10 or more entities, a step it has not taken despite plans for 100 hospitals to join the surveillance system. 51ÊÓƵ Health News independently confirmed with over a dozen hospitals that they had been approached.

Federal public health authorities that private health data be reported. But CPSC officials have that if hospitals decline to share data with the new surveillance system, they could be subject to strict penalties from a data-sharing regulation known as “information blocking.”

Yet some hospital executives say they are reluctant to share patients’ sensitive data because they’re concerned about a different violation — that of .

AI Takes Over

Dozens of ERs across the country already participate in the CPSC’s voluntary National Electronic Injury Surveillance System, or NEISS, through which trained hospital workers report injuries involving consumer products, almost always stripped of patients’ identifiable information. The system helps the CPSC identify products, such as baby loungers, toys, and household appliances, with a pattern of injuring consumers.

The new injury surveillance program goes much further.

At a toy industry trade event in February, acting CPSC Chairman Peter Feldman said the agency is “investing in AI-enabled workflows that improve the quality and quantity of injury surveillance data, while also building up digital infrastructure to handle a massive new volume of electronic health records.”

Konza Health, a Kansas-based organization that runs the state’s health data exchange, will automatically pull and analyze medical records of all patient visits from ERs nationwide. Konza won a worth up to $15.9 million with the CPSC last fall.

In email correspondence with hospital technology officials, Konza Health President and CEO Laura McCrary also has described ERs’ participation as “required,” stipulating that they share patients’ records with identifying information.

McCrary told 51ÊÓƵ Health News by email that the company is not using AI to process the records it receives, saying instead that Konza will use “advanced analytic parsing and filtering capabilities.” Roney, the CPSC spokesperson, did not answer questions about the .

For years, agency officials moving away from human contractors and automating NEISS to save time and money.

But without workers on-site, hospital staffers may no longer receive training to determine what clinical information is important to include for the CPSC. In short, the changes could dilute the quality of the product safety data the agency collects.

“They want to suck in as much data as possible, but I’m not sure how thoughtful they’re being about what is collected and what is actually needed by the agency,” said former CPSC chair Alexander Hoehn-Saric, one of the Democratic appointees Trump fired last year.

Wanted: Injuries From Vaccines and Stingrays

The CPSC’s new data collection appears to contradict its own 214-page , which instructs hospitals not to include identifiable information “such as names, birthdates, or addresses” when reporting cases.

The agency is supposed to receive patients’ identifying information only when needed for follow-up investigations, which happens in fewer than 1% of reported cases, according to the manual.

The CPSC has also historically limited the records it collects to minimize privacy violations in case of a data breach.

The risk is not hypothetical: From 2017 to 2019, the agency improperly released personal health information of around 30,000 people, a disclosure that a top Republican at the time

Konza, however, will receive even more sensitive information on many more people. McCrary said in a statement that Konza will remove patients’ names, addresses, and medical information “not needed by CPSC” before sharing records with the agency.

Leaving a private organization to collect sensitive information introduces risks, including that it could be stolen or used for business purposes, said Hoffman, the Case Western professor.

“Very often, they will use information for marketing because now they’re going to know what conditions people have,” she said.

Roney said that its contract with Konza, which has not been made public, prohibits the organization from selling or marketing the data it collects.

The CPSC’s manual also identifies types of ER visits that should not be reported to the CPSC, which has jurisdiction over only certain consumer products. Excluded injuries are those caused by food, illegal drugs, medical devices, alcohol, or plants, as well as injuries that did not involve consumer products — such as a cut from a rock or broken bones from a fall on the ground — and suicide attempts by adults.

But in a to one hospital and reviewed by 51ÊÓƵ Health News, Konza set no such limits on the information it would gather from ER records and said it would hold on to patient health information for at least 30 days.

In an email sent to hospital technology officials, McCrary wrote that Konza would provide the CPSC with records when a patient is treated in the ER for any of more than 10,000 conditions. The expansive list of diagnostic codes Konza provided in the email includes injuries that do not involve consumer products.

Child injuries resulting from “poisoning by” vaccines or contact with stingrays, neither of which is regulated by the CPSC, are included in the list.

A limited number of hospitals once shared deidentified data on all injuries — regardless of product involvement — through the NEISS using the Centers for Disease Control and Prevention’s injury-tracking program. But the CDC halted that data collection, after funding and staffing were cut last year, and has not restarted it.

Pressure on Hospitals

CPSC Chief Data Officer Elizabeth Puchek, who joined the agency late last year after engineering U.S. Citizenship and Immigration Services’ data system, has told hospitals in emails that they must seek an exemption from the program if they decline to share patients’ emergency room records with Konza.

The CPSC’s targeted outreach has included some of the nation’s largest urban and rural health systems, as well as small, publicly owned hospitals.

Staff members at Mary Greeley Medical Center in Ames, Iowa, said that Konza and federal officials told them their participation in the new program was mandatory. The hospital, which has long participated in NEISS, signed a new contract in April to share its ER records with Konza.

Yet the hospital is reevaluating its participation after being notified that the funds it received to participate in NEISS were “no longer available,” spokesperson Steve Sullivan said.

Several hospital executives, lawyers, and others have raised doubts about the CPSC’s claimed authority.

Harborview Medical Center spokesperson Susan Gregg said the Seattle hospital’s emergency room has “voluntarily submitted de-identified data for many years, but we are not obligated to report this information.”

In Boston, Mass General Brigham has declined to participate in the new program, with spokesperson Kelly Mitchell saying that “to protect patient privacy, we are unable to provide these medical records.”

Henry Ford Health in Detroit; St. Luke’s in Boise, Idaho; and Sanford Health based in Sioux Falls, South Dakota — which together handle over a million ER visits a year — are among the health systems that have been approached but not yet entered into an agreement with Konza, according to representatives. Several of the nation’s busiest hospital systems targeted for the program — including the Mayo Clinic in Minnesota, Yale New Haven Hospital in Connecticut, Nationwide Children’s Hospital and the Cleveland Clinic in Ohio, and Baylor Scott & White Health in Texas — declined to answer questions about whether they’re participating.

Hoehn-Saric, the agency’s former chairman, said he was surprised that the CPSC would insist that hospitals provide identifiable records from all emergency room visits.

“This idea that they can simply demand patient information from a hospital and that the hospital would provide it — I really don’t understand the basis for that,” he said.

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

“The national security might be something worth paying for,” Sen. Bill Cassidy of Louisiana, chairman of the Senate Health, Education, Labor, and Pensions Committee, said July 22 in an exclusive interview with 51ÊÓƵ Health News.

The U.S., which has grappled with drug shortages in recent years, relies primarily on China to produce the active ingredients in many antibiotics, according to in JAMA Health Forum. Domestic facilities have closed or shifted to producing other drugs.

“Do we want China to have that sort of leverage for these drugs to be produced principally, maybe 99%, over there, and we don’t have access to them if tension rises between the two countries?” said Cassidy, who is a physician.

On July 21, Trump said in a that he would give generic drug companies two years to move production back to the U.S., after which he would impose 100% tariffs on imported products, rising to 200% the following year. Generic drugs make up an estimated 90% of all prescriptions filled in the U.S.

Cassidy, who has served in Congress , lost his bid for reelection in May after Trump endorsed a Republican primary challenger, Rep. Julia Letlow.

Last month, more than 16 months after his vote to confirm Robert F. Kennedy Jr. as head of the Department of Health and Human Services, on CBS News’ Face the Nation that the secretary broke promises he made to the senator, including that he would not change the federal recommendations for childhood vaccines.

Asked whether he would summon Kennedy again to discuss those promises, Cassidy said he had asked for him to appear before his committee but had not heard back about whether he would do so. Kennedy in April to discuss the Trump administration’s fiscal 2027 budget request for HHS.

Cassidy told 51ÊÓƵ Health News that when he agreed to vote to advance Kennedy’s nomination, he trusted that Kennedy would keep his word about not disparaging vaccines.

“If they agree to guardrails and disregard those guardrails, you can judge me,” Cassidy said. “You may decide my judgment wasn’t very good, but I don’t think you can say I acted in bad faith.”

Regardless, Cassidy added, Kennedy was going to exert influence in the administration, and he thought it would be better for Kennedy to be in an official post, where his work would be subject to oversight.

“I’m pretty sure that RFK was going to have the president’s ear whether he was in office or not,” he said.

While Kennedy’s efforts to roll back federal vaccine recommendations are being blocked by courts, this week reported that the number of measles cases confirmed in the U.S. so far in 2026 has exceeded the total for 2025 — making it the highest number of cases in 35 years.

Cassidy, a principal author of the 2020 No Surprises Act targeting surprise medical bills, also said he doesn’t think Congress needs to make modifications to the law in the wake of reports that doctors and other healthcare providers are winning huge payouts under the arbitration system the law created. The No Surprises Act was intended to shield patients from receiving big bills for receiving medical care they didn’t know was outside their health plan’s network.

An analysis by this week found that providers were awarded nearly $15 billion in disputed claims in 2025, more than triple the 2024 figure of $4.08 billion.

“The initial step to make sure that people are getting their best deal is price transparency,” Cassidy said.

The HELP Committee on July 22 overwhelmingly approved advancing the Patients Deserve Price Tags Act, a bipartisan bill that would further expand the requirements that hospitals, insurers, and other healthcare providers make prices public and available to patients and employers. A House committee advanced a similar bill this week, also with bipartisan support, but it remains unclear whether either measure will be approved by the full House and Senate.

The interview — in which Cassidy also discussed his — was part of the “How Would You Fix It?” series featuring Julie Rovner, 51ÊÓƵ Health News’ chief Washington correspondent and host of the What the Health? podcast.

An abbreviated version of this interview aired July 23 in Episode 456 of What the Health? From 51ÊÓƵ Health News: “A Shrinking Safety Net.”

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

For the first time in a quarter century, the U.S. no longer meets a main criterion for having eliminated measles as a public health threat. That status hinges on sporadic outbreaks fizzling out within a year. Utah’s outbreak has lasted for longer, since .

Nearly 400 people have been hospitalized with measles in the U.S. this year and last, three people have died, and at least three suffered with .

This month, the Centers for Disease Control and Prevention is set to finalize a comprehensive study of the nation’s measles situation, examining data from January 2025 through June 2026.

“I don’t think we could say with a straight face that there hasn’t been transmission over the past 12 months,” said a CDC scientist with knowledge of the agency’s measles report. (51ÊÓƵ Health News agreed not to name the researcher, who is concerned about retaliation.) The researcher said a national committee of measles specialists will review the CDC’s internal report, which then goes to the Pan American Health Organization, a group that evaluates the measles elimination status of countries throughout North, South, and Central America and the Caribbean.

PAHO will make at an annual meeting this fall, but scientists say the writing is on the wall. “The assessment for elimination isn’t until November, but that is a scheduling issue, basically,” said Anne Schuchat, who led the CDC’s immunization and respiratory disease group from 2006 to 2015.

“It’s just so sad, because some people will get brutally ill,” she said of measles’ return. “This is a wake-up call.”

Pediatricians in Utah have been on the front lines as measles and other vaccine-preventable ailments have returned to the U.S. In interviews with 51ÊÓƵ Health News, six doctors shared insights on this new era of vaccine hesitancy — and what could be done to turn the situation around.

The conversations have been edited for clarity.

On Unvaccinated Children Hospitalized With Measles Complications

Emilie Morris, a hospital pediatrician in Salt Lake County and Utah County: When children come in, they’re often bent over. We call it tripoding, which is particular to upper respiratory infections and airway swelling. They have a rash — viruses cause rashes all the time — but in this context, the kid is hunched over, mouth open, drooling, crying, maybe not even producing tears, because they’re so dehydrated. Really labored breathing, kind of tugging in their belly, tugging between their ribs. Their eyes look kind of glazed over. It’s like they’re seeing through you.

Nathan Money, a hospital pediatrician in Salt Lake County and Utah County: If the child has a fever or trouble breathing, and they’re unvaccinated, I have to be way more aggressive from a medical standpoint, because they are at higher risk of having life-threatening illnesses. I have to do more blood work, or lumbar punctures to rule out meningitis. I have to do things which are painful, and it’s traumatic for the families.

I tell them, “Because your child doesn’t have vaccines, I have to be more worried about conditions like sepsis or meningitis, so therefore I need to do more workup.” The last thing I want to do is miss something. These are parents who love their children. They always tell me, “Do what you need to do to make sure my child is safe.”

On Treating Unvaccinated Children Hospitalized for Measles

Trahern W. Jones, a pediatric infectious disease specialist based in Salt Lake City: So I’m coming into a room and just hearing the most awful barking cough, just a cough and a high-pitch stridor as the child is trying to breathe. And he’s just coughing so hard it just makes you feel short of breath. He looks like he’s been beaten down for days, but he can’t rest, because the cough keeps him awake.

The parents tell me they’re not anti-vaccine, but in the past, somebody they know had a reaction to a vaccine — or something they thought was a reaction to a vaccine — and so they paused vaccines when the child was a baby. They were planning to catch up later.

In another case, the parent was stunned by how awful it was. I asked them what they knew about measles before their child was sick, and they said the only person who’d ever taught them anything about measles was their grandmother who had taken care of her kids with measles ages ago. That’s something I’ve heard from other parents. It’s such an awful illness. Even the best possible course is going to be one of the worst diseases most children ever go through.

There are multiple facets to it. Physically, the child has been beat down for multiple days by this virus. The parents don’t get to sleep, because they’re nursing their child. Then there’s the emotional component because the parent is regretting not getting the vaccine, not realizing how bad this was, and then feeling deeply ashamed, trying to reconcile with family members who are really upset at them for not getting their child vaccinated.

Morris: One child was from a family that was uninsured because they didn’t feel that they would need to use the medical system. They were faced with the high burden of cost of our healthcare system. The cost was playing into the parents’ decision on whether or not their child should receive necessary medical care. I said something like: “Please don’t go home. Your child needs oxygen. She has pneumonia. We will figure out a way to pay for this, because we acknowledge what we do is expensive.”

On top of that, the parent had several other children in the home who weren’t vaccinated. It was past the period where we could intervene with vaccines to try to prevent infection, so then our recommendation was to quarantine their children at home for 21 days: “Don’t interact with anybody else in your community. Don’t go to the grocery store, even with a mask. Please take this seriously.”

It takes time for parents to understand the level of concern I have, even when their child is physically ill in the hospital requiring ongoing care. It’s pretty indicative of the breakdown of trust between physicians and families. I say, “This is the gravity or severity of your child’s situation and how serious we need to be about protecting other people.”

It’s frustrating. How can I make people understand I have a very genuine concern for their child? And I know they share that concern, but maybe it’s not the same degree of concern, because they don’t understand the illness and how severe it can become.

Money: It’s heartbreaking to see these children struggling to survive when measles could have been easily prevented by a safe mechanism that is readily available and well studied. These are well-meaning parents who love their children, who have gotten bad information from federal leadership or from online sources. The saddest part to me is when I am caring for a child and the parent says, “I didn’t know that this could get so bad.”

---

On Conversations With Parents Who Don’t Vaccinate Their Children

Tim Duffy, a pediatrician in Salt Lake County: A lot of families aren’t aggressively anti-vax, but they’re hesitant. Younger parents who grew up in the digital age have done their research — “research” in quotation marks — for months. And they keep getting confirmation of their concerns on social media. They think they’re doing what’s best for their child.

I’ve told families: “You could do nothing I say as a pediatrician. You could sleep your child on their stomach. You could not put them in a car seat or, when they’re older, not use seat belts. You could do nothing I say, and for your individual child, they will probably be OK. But from my standpoint, where I’m taking care of thousands of kids, within a system that takes care of hundreds of thousands of kids, we will have bad outcomes. These children will show up at our facilities, and it’s so sad.”

Pediatrician in southern Utah whom 51ÊÓƵ Health News agreed not to name, because of concerns about harassment after being targeted by anti-vaccine activists in the past: A lot of parents are concerned about autism. I’ve told them that I’d be very concerned if there was any evidence that what we’re doing is causing autism. But if vaccines were causing autism, we should see more cases of autism in vaccinated kids compared to unvaccinated kids, and we’re just not seeing that.

I’ve also had families who say they want to be natural, or that they’re concerned about what is in the shots. A frequently asked question is: “Did you vaccinate your children?” I say that knowing what I know, I’m confident giving this to my kids. They’re all vaccinated.

---

On the Influence of Politics on Vaccine Hesitancy

Jones: Vaccines have become a political football. That wasn’t true 20 years ago. But now it’s used to drive a wedge between groups of people, which is unfortunate. Vaccines are one of the main reasons why we don’t have to worry about losing our kids.

Southern Utah pediatrician: People don’t know who to believe. If politics comes up, I tell parents that my messaging on vaccines is not politically motivated. When parents ask about changes to the vaccine schedule, I’m transparent. [In January, the Department of Health and Human Services reducing the number of vaccines given to children. A few months later, a federal judge blocked those changes.]

I’ve said there was a process for the approval of immunizations through ACIP [the Advisory Committee on Immunization Practices], which is made up of scientists, public health experts, and doctors, and all those people were let go, and a new panel was selected. A couple of individuals changed the recommendation outside of the time-tested, evidence-based process for evaluating vaccines. That raises concerns for me as a doctor. I tell parents that the American Academy of Pediatrics, the American Academy of Family Physicians, and several other professional organizations have issued statements saying that these changes are not based on evidence.

Ellie Brownstein, a pediatrician in Salt Lake County and president-elect of the Utah chapter of the American Academy of Pediatrics: I avoid talking about politics, but what’s being said has added another layer to our work. One family asked me about changes to vaccine recommendations, so instead of just telling them what immunizations are due, I talk with them about why physicians and researchers have followed a different schedule for years, about the reasoning and the science behind it. I explain that I trust these experts over someone without a lot of experience.

Money: People are not vaccinated, because they’ve lost trust in the medical community. They’re placing trust elsewhere. Rebuilding trust is a complicated process, but it comes from consistent messaging at every level, from the pediatrician to local health departments to community leaders, city leadership, district leadership, religious leadership, educational leadership.

We need consistent messaging from state leadership, which has been pretty absent. I want to see commercials on TV about the safety of the MMR [measles, mumps, and rubella] vaccine and the dangers of the measles, sponsored by my state leadership. I’d like to see this on billboards and in schools, in public buildings and grocery stores. I want to go to a sports event and see messages about the measles and the MMR vaccine. Right now, people have to go out of their way to find information from reputable sources.

We also need policy changes to support vaccination. This train is going in the wrong direction, and it can feel like a helpless situation, because we’re just not seeing the public messaging and leadership that’s needed to turn this around.

---

Advice on Talking With Parents Who Don’t Vaccinate Their Children

Jones: Approach them with as much compassion as you possibly can. Ask open-ended questions to learn about their experiences that led them to have these concerns. I think it’s really important to not come down on them, citing facts and figures and pointing to guidelines on why they need to get their kids vaccinated. But try to direct their attention to the fact that you’re a real person with your own real experiences and knowledge. I point out to families that I have my own kids, and I would never recommend something for your kids that I wouldn’t do for mine.

Southern Utah pediatrician: I’ve learned that if you come down hard, you’re going to lose people who need care. My number one goal now is to build bridges and maintain a relationship with families, because that’s what’s going to allow me to convince some of them.

I approach people differently depending on where they are. Parents who are very skeptical or anti-vax will say no when I tell them their child is due for immunizations. I’ll say: “Fine. You guys get to choose. You’re the parents. But I’m curious to know what your reasoning is.” Sometimes they’re just like, “It’s something I’ve decided.” They don’t want to have a conversation.

It’s a good day if I can have a conversation with someone who doesn’t want to vaccinate, even if I don’t convince them. I try to help them think through things rather than shoving anything down their throat. When they’re done talking, I’ll ask, “Can I share my perspectives on this?” Some will say yes enthusiastically, and others will say yes because they’re being polite.

A lot of parents aren’t sure what to do, and those are the people I focus most of my time on. I focus our conversation on their specific concerns, and I’m open about specific side effects that different immunizations can have. For example, I’ll tell them that some children get a fever after a vaccine, which is OK. The fever is not harmful, but it can make babies feel crummy as their body is building up antibodies against viruses and bacteria.

Brownstein: I don’t like the idea of excluding unvaccinated kids from my practice. I know some do that. But what that does is it ends any future discussion. I can’t keep talking with parents about vaccines if I kick them out of my practice, and if these parents find like-minded doctors, this situation will get worse.

---

On Being on the Front Lines of Measles’ Comeback in the U.S.

Money: I wish that people could see what I see. Everyone else sees what people post on Instagram. Or they think, “Someone I know had measles when they were a kid and they were fine.” But as a hospital-based pediatrician, I see what happens when things go poorly. I see what happens when children with measles aren’t able to breathe on their own, and they’re in a hospital bed with a cannula in their nose, struggling to breathe, an IV in their arm because they can’t drink on their own. And the child is terrified, and the parents are scared that their child might die.

It’s heartbreaking as a pediatrician and as a father to know that the entire situation could have been easily prevented.

Duffy: Even though parents say vaccination is their choice, I still feel personally responsible if something bad happens that’s preventable, because I feel like I didn’t say the right thing, I didn’t ask the right questions. Maybe I let it drop because of the look on a parent’s face.

Morris: Every pediatrician I know cares so deeply about what they do. Sometimes people forget that we are human beings practicing this discipline, and we bring all our concerns for our community into this space. I’m trying to navigate a lot of complex human emotions, like how it feels to hold grief with a family when something bad happens that was preventable — which is the worst situation, because you think, “Could I have done something differently?”

Jones: I think we’ll see more diseases start coming back that we thought we had gotten rid of. I think it’s going to take dramatic changes to actually prevent those outcomes. I’m not necessarily seeing those changes being done by those in power.

I think of that quote from The Lord of the Rings. It’s something like, you don’t get to choose the time that you’re born into, but you get to choose what you’re going to do about it. And if there’s any comfort that I have, it’s in knowing that there are right decisions to make and that I’m going to make them, and I’m going to help others make them, too.

This article first appeared on 51ÊÓƵ Health News and is republished here under a .

More than a decade ago, Noon said, she was diagnosed with adult-onset Still’s disease, a rare type of inflammatory arthritis that can cause rashes, debilitating pain, and fevers. The disease upended her life.

She had been living a typical suburban life in Michigan, shuttling her two kids to activities like cheerleading, choir practice, and track. She was active in the PTA. She managed a bank.

She went from that to crawling to the bathroom because she was in so much pain, “just crying all day long” from being so sick.

Noon, who is disabled, said she couldn’t work for eight years — a time marked by hospital stays that stretched for weeks.

“I honestly thought I was going to die,” Noon said.

So it was a shock when Michigan denied her application for Medicaid benefits last year after she lost private insurance. Worse yet, it came down to an IT error, according to an attorney who helped Noon overturn the denial.

“I can’t afford my medical care. I have to have insurance,” said Noon, who has returned to working.

Deloitte, a multibillion-dollar global consulting firm, has operated Michigan’s Medicaid eligibility system under contracts worth roughly $768 million since 2006, according to contracts reviewed by 51ÊÓƵ Health News. Nationwide, Deloitte dominates this important slice of government business: At least 25 states have awarded the company contracts to build or run computer systems that control access to safety net benefits such as Medicaid.

Michigan’s system has incorrectly directed people with disabilities into skimpier benefits that cover limited care or has denied coverage completely, a 51ÊÓƵ Health News investigation found. Similar problems were at the center of a class-action suit in Tennessee, , and have occurred in Texas, according to interviews and state records.

The 51ÊÓƵ Health News investigations are based on statements from state officials, allegations and declarations in court documents, emails obtained through public records requests, state government information provided to Medicaid enrollees and applicants, and interviews with attorneys and patients or their caregivers.

In an emailed statement, Deloitte spokesperson Karen Walsh said it found “no system anomalies causing routine denials of Medicaid for people with disabilities.”

“There are many reasons why someone may no longer be eligible for a benefit they once received or believe they deserve,” Walsh said. “All of the eligibility systems we support are owned by the states and built to their unique specifications. We will continue to work at the direction of our state clients.”

Lynn Sutfin, a spokesperson for Michigan’s Department of Health and Human Services, said it “is not aware of any widespread or systemic issues” within Bridges, Michigan’s eligibility system for Medicaid, SNAP, and other benefits, “related to disability‑based eligibility pathways.” 

Since 2006, Deloitte’s contracts with the state have said the company is responsible for development, implementation, maintenance, operations, and enhancements to the Michigan system.

Computer system problems foreshadow trouble as states prepare to roll out the most significant and complicated changes to their Medicaid programs in years. Those changes, dictated by President Donald Trump’s landmark One Big Beautiful Bill Act, have states rushing to update their Medicaid computer systems.

Nationwide, on Medicaid have a disability, according to 51ÊÓƵ.

“When these administrative systems get overloaded, everyone gets impacted,” said Pamela Herd, a University of Michigan professor who researches bureaucratic obstacles to accessing government benefits. “The systems are going to be really, really strained.” 

In Michigan, Noon was eligible for Medicaid through a program that provides coverage to disabled adults who work. But the state’s computer system didn’t register that she is disabled and said she earned too much to qualify, according to documents reviewed by 51ÊÓƵ Health News and interviews with Noon and Anastassia Kolosova, a disability rights attorney who helped her.

Without Medicaid coverage, Noon paid hundreds of dollars out-of-pocket for prescriptions, after scrounging for discount coupons. She takes some of the drugs twice a day.

Without them, “I’m toast,” she said. It was stressful “not knowing if my medicine’s going to be $50 or $500 this month, because it changes constantly.”

Noon said her doctor agreed to fewer visits to avoid medical bills.

“It was kind of a nightmare,” Noon said.

‘I Just Wanted To Give Up’

Medicaid, a safety net health program jointly run by the federal government and states, people with low incomes or disabilities. State governments rely on companies like Deloitte to design and operate computer systems that assess whether people qualify for Medicaid or food aid through the Supplemental Nutrition Assistance Program, commonly known as food stamps.

That technology has a history of errors that deprive eligible people of benefits, earlier 51ÊÓƵ Health News investigations have shown. As reported previously, Kenneth Smith, a Deloitte executive who leads its national human services division, said Medicaid eligibility technology is state-owned and agencies “direct their operation” and “make decisions about the policies and processes that they implement.”

“They’re not Deloitte systems,” he said, noting Deloitte is one player among many who together administer Medicaid benefits.

States are under immense pressure to update their eligibility systems on a tight schedule to adhere to requirements in the Republicans’ sweeping 2025 tax and spending law. Companies including Deloitte, Accenture, and Optum are being paid millions in taxpayer funds to make the changes, which are projected to strip Medicaid from roughly 7.5 million people and SNAP from 2.4 million people by 2034.

Many coverage restrictions in the new federal law don’t apply to seniors, children, or people who are disabled, such as Noon. Nonetheless, the law’s demands on state agencies and the computer systems they oversee will disrupt benefits, advocates for Medicaid enrollees and other healthcare experts said in interviews.

The same systems also need to correctly classify why someone is eligible for Medicaid — and therefore which rules and restrictions apply.

The law’s SNAP restrictions began to take effect in 2025, and major Medicaid provisions begin later this year, generally after the midterm elections.

Kolosova is a supervising attorney with Disability Rights Michigan, a legal advocacy organization for people with disabilities. She said she has been unable to get a meeting with Michigan officials to understand the underlying problem that deprived Noon of health coverage.

State records show Deloitte has held contracts for at least 14 years for Bridges, Michigan’s eligibility system for Medicaid, SNAP, and other benefits. In its attempts to secure more business, the company often cites its nationwide footprint in Medicaid operations.

“Deloitte understands Bridges,” and its history in Michigan makes the company “the ideal vendor,” the firm said in its . Given Deloitte’s work on similar systems in 31 other states, , “Michigan benefits from our technical expertise drawn from across the nation.”

But advocates who work with people with disabilities say Michigan’s computer system has failed to recognize when certain adults should receive Medicaid benefits.

Problems aren’t unique to the Great Lakes State. Medicaid beneficiaries who brought a against Tennessee in 2020 said the state’s Deloitte-built system “does not reliably test for eligibility” for several categories of people with disabilities. The firm’s is worth $1.12 billion over a decade.

A federal judge in 2024 , ruling that Tennessee violated federal law and the U.S. Constitution. The lawsuit does not name Deloitte as a defendant.

In Michigan, a from the state’s Office of the Auditor General said government agencies “did not provide effective project administration” and failed to ensure that the state could “independently maintain and operate Bridges” because “the contractor did not transfer knowledge and skills” to state officials, according to the audit.

The auditor’s report said that, as a result, Deloitte’s original contract — valued at roughly $70 million — ballooned by $50 million over the initial cost, a 71% increase. State records show Michigan would go on to add millions more, bumping the cost of Deloitte’s initial contract to $124.1 million.

The audit said maintaining the contract would result “in significant additional costs.”

Sutfin said that “the state is now fully capable of operating and maintaining Bridges independently.”

Deloitte’s in Michigan — worth $197.4 million — is set to expire in 2030.

Noon applied for Medicaid in August, she and Kolosova said. In September, the Michigan Department of Health and Human Services sent a notice denying her coverage, citing incorrect income information and stating she wasn’t disabled, according to Kolosova and state documents reviewed by 51ÊÓƵ Health News.

Noon said that when she called the state for help, state workers “didn’t know anything about” the Medicaid program she had applied to, Freedom to Work.

“I can’t tell you how many times I just wanted to give up,” she said.

For some people with disabilities, Medicaid is supposed to count only half their earnings when assessing whether they should receive benefits. That didn’t happen. Kolosova said she thinks Michigan’s eligibility system didn’t identify Noon as disabled, even though the state “already had all the information they needed” to show she was.

By failing to recognize her disability, the state used the wrong income 51ÊÓƵ and said Noon earned too much to qualify for Medicaid, she added. Deloitte and Michigan declined to respond to a detailed list of questions about Noon’s experience.

Kolosova said Disability Rights Michigan has seen a growing number of calls from people about Freedom to Work benefit denials. “Maybe two or three a month,” she said.

“There’s something wrong with the system if they’re relying on individual caseworkers to catch this,” Kolosova said. “The system needs to work.”

Enrolled in the Wrong Coverage

Noon’s experience isn’t the first time in recent years that people with disabilities have been denied benefits by Deloitte-run eligibility systems.

In Texas in 2023, Lilly Livingston, who has Down syndrome and is now 22, was abruptly cut off from Medicaid benefits, according to Livingston’s mother, Marie. She has undergone numerous surgeries to reconstruct her severely misaligned jaw, which caused sleep apnea and impaired her speech and chewing ability. She relied on an array of Medicaid services, including speech and occupational therapy.

When Livingston lost benefits, she was wrongly enrolled in Healthy Texas Women, a limited program that provides breast and cervical cancer screenings and family planning services.

“Trying to fix that was a nightmare,” Marie Livingston said.

Terry Anstee, an attorney with Disability Rights Texas, intervened.

In a September 2023 email with the subject line “URGENT,” Anstee begged a Texas Medicaid eligibility worker for help.

Some unknown “error” had occurred and stripped Livingston of her benefits, Anstee said in an email he sent to a state Medicaid staffer. “Lilly has had 2 major surgeries, and her recovery is contingent on Medicaid.”

It was clear that Livingston qualified for Medicaid through multiple paths, Anstee said: “It never made any sense.”

Deloitte declined to respond to a detailed list of questions about Livingston’s case. Jennifer Ruffcorn, a spokesperson for Texas Health and Human Services, confirmed that Livingston was erroneously enrolled in Healthy Texas Women. However, Ruffcorn said, Livingston did not experience a lapse in Medicaid coverage in 2023.

Anstee disputed the state’s characterization: “A glance in the system by a Texas HHS press officer or other staff 3 years after the fact may not tell the full story or show the issues that Ms. Livingston endured in August and September 2023. Ms. Livingston experienced lapses in coverage.”

The problem Livingston encountered in Texas was also reported in Michigan.

In 2024, mental health services advocates in Michigan raised red flags about a similar error: People with disabilities were being enrolled in a limited Medicaid program covering sexual health and family planning services. Plan First covers only services and treatment for sexually transmitted infections. It doesn’t provide the comprehensive coverage that people with disabilities require.

But some enrollees were “being automatically enrolled in Plan First,” Malcolm Kletke, a lobbyist representing the Community Mental Health Association of Michigan and other mental health providers, wrote to a Michigan health official, according to emails obtained by 51ÊÓƵ Health News through a public records request.

These enrollees had “long received Medicaid due to their disability,” and getting enrolled in the wrong plan meant losing access to “services essential to their recovery and quality of life,” Kletke wrote in September 2024 to Amy Epkey, a senior deputy director of the Michigan Department of Health and Human Services.

In fact, the state’s own records show that Medicaid enrollment for those with disabilities did decline.

Over roughly four years, enrollment in the Medicaid category that includes people with disabilities , according to the Michigan House Fiscal Agency, which provides nonpartisan analysis to lawmakers. The drop was unusual given people generally leave the program because of death or having recovered from a temporary disability, and it’s unlikely those numbers would balloon, said Robert Sheehan, who was the mental health association’s CEO at the time.

Sutfin said the state examined the decline in enrollment and found “several contributing factors, including post‑covid renewal patterns, changes in beneficiary circumstances and movement to other coverage categories.”

After inquiries from 51ÊÓƵ Health News, the Michigan health department acknowledged in April that it had made changes to “address concerns raised by advocates.”

Michigan’s computer system now prevents approval of Plan First benefits until all other coverage options are evaluated, Sutfin told 51ÊÓƵ Health News. Sutfin said the changes were implemented but “not to correct system errors.”

Sutfin said the state submitted a change request to Deloitte to address this problem. The fix was implemented in January 2025.

Until presented with Kletke’s email, the state had denied there were problems related to Plan First.

Even after the state addressed that issue, other problems persisted.

Noon’s coverage denial notice arrived in September. She fought with the state for months to reverse its decision, “paying cash for all of the medicines through these appeals over and over and over again.”

It was only in January that she was approved.

“I literally cried,” Noon said. “It was a really big deal.”

This article first appeared on 51ÊÓƵ Health News and is republished here under a .