Mitchell noted that employers, which offer coverage to more than 160 million Americans, are a big player in the nation’s healthcare system — a role they came into because of “an accident of history,” she said.

“They weren’t looking to get into the healthcare business,” she continued, but “they were looking for alternatives to wages when there were limits on what they could offer, and they started with what was a pretty inexpensive offering — helping pay for hospital care — and that has now grown to be the second-largest line item in their budgets after payroll.”

Rovner and Mitchell discussed the fact that while large employers do have market power, the rest of the healthcare system banded together in response.

“There’s been this arms race of consolidation, meaning that even the largest employers in the world are smaller and don’t have the leverage many times,” Mitchell said.

Asked to identify the systemic changes large employers would like to see, Mitchell pointed to boosting primary care and referring patients to high-quality specialists. She said changes to business policies — in particular, banning anti-competitive practices and increasing price transparency — would help, too.

“We have a very real affordability crisis,” she said.

An abbreviated version of this interview aired July 16 during Episode 455 of What the Health? From ºÚÁϳԹÏÍø News: “States Start Their Medicaid Cuts.”

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The ºÚÁϳԹÏÍø News Minute is available every Thursday via direct download or the RSS feed.

July 16

Sam Whitehead reads the week’s news: Some health plans are pocketing their enrollees’ drug discounts, while many Affordable Care Act insurers want to raise rates by double digits next year.

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When Gov. Gavin Newsom, using his , refused to extradite a physician accused of prescribing and mailing abortion pills to a Louisiana woman, he said California would “not ever” allow “extremist politicians” to punish its doctors.

Newsom, who is considering a run for president, has long championed reproductive rights, but state lawmakers in the Democratically controlled California legislature know future governors might not have the same political beliefs.

Republican gubernatorial candidate Steve Hilton, a former Fox News host endorsed by President Donald Trump, has vowed to honor these types of extradition requests from other states if he’s elected, Louisiana “is trying to uphold what its people voted for, and California is undermining it.” His opponent, Democrat Xavier Becerra, has said he would deny the requests.

Legislation advancing in Sacramento is the latest chapter in a tit for tat that’s been happening between conservative and liberal states since 2022, when the U.S. Supreme Court overturned Roe v. Wade, ending federal legal protections for abortion.

by state Assembly member Rebecca Bauer-Kahan, which is being heard in committee, would take some decisions out of the governor’s hands, requiring governors to deny extradition requests for healthcare providers who prescribe abortion medication or administer gender-affirming care. It would also shield anyone in California who helped patients travel to California or another state to receive legal care. While opponents cast “shield laws” as an incursion on other states’ authority, supporters of the bill view it as insurance — even with Becerra leading Hilton 52% to 31%, according to by the University of California-Berkeley Institute of Government Studies.

Newsom spokesperson Marissa Saldivar said the governor doesn’t comment on pending legislation. Hilton and Becerra didn’t return calls for comment.

“Protecting providers from prosecution should not rely on shifting political winds or a single person’s decision,” said Alyssa Sherer, a nurse practitioner who spoke in support of the bill at a Senate committee hearing in June. Sherer is also the medical director at Hey Jane, a telehealth medication abortion provider. 

Thirteen states have banned abortion outright, and 28 other states ban abortion somewhere between six weeks and viability. At the same time, other states that allow abortion have enacted shield laws to protect doctors and nurses from liability when they prescribe across state lines.

People living in states with total abortion bans are increasingly getting abortion pills prescribed via telehealth, from 74,000 abortions in 2024 to 92,000 abortions in 2025, according to the Guttmacher Institute, citing numbers from its Monthly Abortion Provision Study.

Critics of shield laws say that states have a legitimate interest in enforcing their own statutes and that such laws represent an attempt by some states, like California, to nullify the legal decisions of others.

“If California says, ‘We’re not going to honor any other state’s laws. We’re going to ship abortion pills into your states. You can’t have a law that says abortion is illegal,’ I don’t know — that doesn’t seem like a workable situation,” said Greg Burt, who is vice president of the California Family Council and has spoken in opposition to shield laws at the State Capitol.

Twenty-one other states and Washington, D.C., have similar shield laws, but Arizona, California, Michigan, North Carolina, and Pennsylvania’s rely on an executive order, which could be reversed by a successor, according to the Guttmacher Institute.

Amanda Barrow, a senior staff attorney at the Center on Reproductive Health, Law, and Policy at UCLA Law, said passing extradition protections would put California on firmer footing, because an executive order “could be revoked by a governor who is anti-abortion or anti-gender-affirming-care.”

Hilton has said he would do just that if elected.

“Just as I wouldn’t want to see Louisiana coming in and undermining something that we voted for here in California,” the GOP candidate told KQED in January. 

During a , Becerra said he was strident about protecting reproductive rights as the state’s attorney general. “Absolutely no,” Becerra said of allowing California physicians to be extradited. 

This year, Hawai‘i to its existing shield laws. And Oregon , including banning law enforcement from cooperating with out-of-state or federal investigations into care that’s legal in the state.

But Republican legislators in conservative states have cast telehealth visits as an end run around their laws. And some have moved to restrict abortion pill access.

The governors of , , and have signed bills this year that criminalize the sale, purchase, or distribution of medication that induces an abortion. Those states make it a felony to provide medication abortion drugs to people who are seeking to end a pregnancy. The laws impose up to 10 years in prison with potentially tens of thousands of dollars in fines.

Mississippi amended the state’s controlled substances code to add abortion pills as a criminal category. Although the state already prohibits abortion broadly, the measure specifically addresses distribution, which could subject out-of-state providers to prosecution.

In January, Louisiana a California doctor, Remy Coeytaux, mailing abortion pills to a patient. Newsom denied the request. Likewise, New York Gov. Kathy Hochul denied Louisiana’s February 2025 extradition request for a .

Texas has taken a slightly different legal tact. Attorney General Ken Paxton, a Republican running for the U.S. Senate, obtained a default judgment of more than $100,000 against the New York doctor targeted by Louisiana, but a , citing New York’s shield law. Neither Paxton nor Louisiana Attorney General Liz Murrill responded to requests for comment. 

Fear of being charged with a crime for providing quality medical care is contributing to physicians leaving medicine, said Sacramento emergency room doctor Kamara Graham, who is vice president of the California chapter of the American College of Emergency Physicians, which is supporting the bill.

“It’s really conflicting and hard for us to weigh that concern of: Will I get extradited and charged and potentially be taken away from my family? Or do I do the right thing for my patient?” Graham said.

The availability of medication used in most abortions could soon change nationwide. Under the leadership of Health and Human Services Secretary Robert F. Kennedy Jr., the Food and Drug Administration it is conducting a safety review of mifepristone, one of two medications in pill form that is used in most U.S. abortions. The FDA maintains the drug is safe and effective.

If the FDA were to decide that mifepristone is not safe, such a ruling would supersede state laws, even in states where abortion is legal. If mifepristone is restricted, many telehealth groups have said they would switch to using only the other medication, misoprostol.

“The elephant in the room is whether the Trump administration, particularly after the midterms, makes some kind of move to put national limits on access to abortions,” said Mary Ziegler, a law professor at UC-Davis who has written several books on reproductive health law.

“Not everything is something that the legislature can solve for,” Ziegler said, “because there’s some uncertainty about how the federal courts are going to react to all of this.”

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If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

Eight days before my 33rd birthday in April, a social worker at a crisis clinic near Denver determined I was an imminent danger to myself. She placed me on an involuntary 72-hour mental health hold.

What came next wasn’t treatment, but a search for a bed. Clinic staffers called area hospitals with inpatient psychiatric units, asking if they had available beds. They didn’t. So, I was told I had to spend the night at the clinic, which is open 24/7. I settled into a recliner, trying to make myself comfortable as my mind drifted in a blank, disassociated haze. Sleep came in brief bursts.

Since the 1950s, the United States has seen a nationwide due in part to deinstitutionalization and the rise of antipsychotics. But that has created a critical shortage for those needing help. From 2011 to 2023, the number of hospitals with inpatient psychiatric units , according to a 2025 study. Another study from that year found that this country has 28.4 inpatient psychiatric beds per 100,000 people — not even half the 60-bed ratio researchers frequently refer to as the .

The shortage has created what the American Psychiatric Association : emergency rooms overwhelmed with people suffering from severe mental health illnesses, inpatient stays prematurely shortened to speed up bed turnover, and acutely ill individuals left without critical care.

“Where are these people going?” said , an assistant health policy professor at Rutgers University, who co-authored those 2025 studies. “For people who don’t receive this care, they don’t just go away. How is it affecting them? Society? Their families?”

Meanwhile, the White House shut down the part of the national suicide hotline catering to LGBTQ+ youth, President Donald Trump’s 2027 budget proposal calls for cuts to agencies , and Health and Human Services Secretary Robert F. Kennedy Jr. recently announced a plan to .”

A Fractured System

I was already intimately familiar with the country’s fractured mental healthcare system before I was involuntarily committed. What I had yet to experience myself, I saw through my wife: waitlists, outpatient programs stretched beyond capacity, and inpatient psychiatric care so scarce that access often depends on surviving a crisis severe enough to justify it.

She died by suicide after we had separated.

As the years passed, grief and anxiety pushed me from observer to patient.

At the crisis clinic, I woke up the following morning disoriented and groggy. In the bathroom — its door deliberately unable to latch, swinging both ways so staffers could enter in case of an emergency — I stood at the sink and watched the faucet run, trying to piece together how I had ended up here.

America’s history of treating mental illness is long and complicated.

The 19th and 20th centuries saw the removal of people with severe mental disorders from jails and — squalid facilities designed to house the poor — to state asylums that (though they ultimately became ). From the 1860s to the 1930s, the number of psychiatric hospitals increased dramatically, according to the American Psychiatric Association, and by 1955, the number of psychiatric beds in the U.S. peaked at more than half a million.

However, owing to the development of antipsychotics, the belief that psychiatric institutions were inhumane, and President John F. Kennedy’s 1963 to free thousands of Americans from a life in institutions, many state hospitals shut down. An estimated for adults and kids are left in a country where more than 14 million experience severe mental illness each year.

Two years after JFK’s legislation passed, a new policy prohibited federal Medicaid funds from covering inpatient psychiatric care in facilities . The goal was to encourage states to move patients out of large, often substandard psychiatric institutions into community-based care settings.

The consequences of these changes, however, have been far-ranging. People with severe mental illnesses are often forced to as they wait for a bed to open. The length of stay in state psychiatric hospitals , according to research by the Treatment Advocacy Center, a national organization focused on eliminating barriers to the treatment of severe mental illness. And some people with mental illness .

From 1986 to 2014, as the behavioral health crisis intensified, mental health expenditures in the U.S. rose from $32 billion to $186 billion — though the proportion of that spending allocated to inpatient care .

This period also recorded major policy shifts affecting inpatient hospitalization rates, notably the 1999 U.S. Supreme Court decision in Olmstead v. L.C. The ruling shifted care away from psychiatric facilities by mandating states to people with developmental and mental disabilities.

“The road to hell is paved with good intentions,” said Leslie Carpenter, legislative advocacy manager at the Treatment Advocacy Center. “A lot of these bills, including the Community Mental Health Act, were really well intended and ended up with adverse consequences.”

For me, that next day at the clinic passed both painfully slowly and in a blur. A staff member I hadn’t met before told me they were still reaching out to hospitals across the region. The search for a bed continued.

‘No One Wants To Pay for Any of This Care’

Last year, members of Congress introduced two bills to change the 16-bed Medicaid funding cap at inpatient psychiatric facilities, the and the , which would increase the cap to 36 beds. Both have stalled in the House.

According to the Congressional Budget Office, a federal agency that analyzes budgetary and economic issues, eliminating the 16-bed limit would increase Medicaid expenditures from 2024 to 2033.

“No one wants to pay for any of this care that people need,” said Colorado state Sen. , a Democrat who has witnessed limitations to Colorado’s mental healthcare system firsthand because her son has schizoaffective disorder.

In lieu of federal action, states are stepping up to bridge the gaps.

Colorado, 15 other states, and Washington, D.C., now operate under waivers allowing Medicaid to fund inpatient facilities for mental health treatment, according to KFF data. Seven additional states have waivers pending. One 2025 study found that these waivers may be tied to fewer hospitalizations, emergency department visits, and incarcerations .

Yet even local efforts to improve mental healthcare face resistance. In California, Colorado, Iowa, Missouri, Nebraska, and New York, locals have pushed back against proposed psychiatric facilities for minors, claiming such facilities will worsen safety and lower property values. Behavioral health advocates have disputed these claims and argued they are rooted in stigma.

That psychiatric facility in Colorado was . The state has nearly 20 inpatient beds per 100,000 people, , according to 2022 data across all 50 states plus Washington, D.C., collected by the Treatment Advocacy Center. Wyoming ranked first with 47.3 beds per 100,000 residents, although, as the least populous state, it has only 275 total inpatient beds compared with California’s 5,703. Minnesota ranked last, with only 4.3 inpatient beds per 100,000 residents.

While increasing the number of inpatient psychiatric beds is vital, mental health advocates are also calling for , such as peer support specialists and clubhouses, where people with serious mental illnesses can learn life skills and find community.

When it came time for me to use our mental health safety net, I was among the fortunate ones: At noon the day after my hold began, a bed opened at a hospital in Denver — a rare stroke of luck in a system in which many people wait days or weeks for the care they need. An ambulance transferred me to the hospital at 3 p.m., marking 21 hours into my 72-hour hold.

Two days later, on my last day at the psychiatric hospital, I stood outside the nurse’s station awaiting discharge papers.

A man I had not seen before looked at me and asked, “Are you leaving?”

“Yes,” I said. “Are you being admitted?”

“Yeah,” he responded. “This is my third time being hospitalized in a year.”

I shook his hand. “Good luck,” I said, and I walked out the door.

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In preliminary filings with state regulators, insurers are seeking a median rate increase of 14% for 2027, according to in 16 states and the District of Columbia by the Peterson-ºÚÁϳԹÏÍø System Tracker.

If those rates are ultimately approved, it would be the second-highest increase since 2018.

That would be a “triple whammy” for consumers, said Cynthia Cox, a senior vice president and the director of the Program on the ACA at KFF, because they have already had to pay higher premiums in 2026 and saw the expiration of more generous tax credits to offset their premiums at the end of last year.

President Joe Biden sought to bolster the program known as Obamacare by enacting more generous tax subsidies, driving down out-of-pocket costs for consumers and increasing enrollment to more than 20 million Americans. But under President Donald Trump, Republicans have sought to scale back taxpayer support for ACA coverage, allowing the Biden-era enhanced subsidies to expire.

As of February, ACA enrollment had fallen by about 3 million people compared with the same time last year. While Cox and other policy experts say that’s because increased costs for the plans drove out people who feel they can get by without insurance, the Trump administration asserts that much of the enrollment growth under Biden .

The main factor driving proposed premium increases for 2027, as in most years, is the rising cost and use of medical care.

There’s growing demand for costly specialty medications and for the weight loss drugs known as GLP-1s, the Peterson-KFF report notes.

But the report also said that about 4 percentage points’ worth of the premium increases insurers proposed are due to lasting effects of the expiration of enhanced subsidies. Insurers expect that with young and healthy people leaving the program rather than paying higher premiums, their remaining customers will be older, sicker, and therefore costlier on average.

 “It’s likely that the people who dropped their coverage were also the healthier people, because sicker people were probably going to try to make it work however they could, to stretch their budget to keep their health insurance,” said Cox, of KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News.

In their rate filings, some insurers also said they had to raise premiums partly because of policy changes by the Trump administration that are expected to make it harder for some people to enroll.

Together with the expiration of the larger subsidies, the new rules “account for 12.7% of the requested rate change,” the insurer UnitedHealthcare wrote in its rate filing with New York state, according to the Peterson-KFF report.

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Each year, Amgen, which makes the drug, called , sent the coupon card worth thousands of dollars, and that counted toward Gruber’s health insurance deductible and out-of-pocket maximum.

Using the card, Gruber usually met that maximum by February, leaving his health insurance to fully cover his in-network medical costs and reducing his cost for the drug to $0 for the rest of the year.

But this year, his new health insurer, , pocketed the coupon card and required Gruber to pay for the drug until he satisfied the cost-sharing requirements on his own.

If Oscar Health had applied Amgen’s coupon toward Gruber’s cost sharing, he would have been on the hook for about $3,000 in covered services. Without it, he had to use his savings to meet the plan’s $10,600 out-of-pocket maximum.

“The real insult here is that they’re taking the money that’s intended to help you,” said Gruber, who had planned to buy a home next year with his savings. “I feel desperate, pressed against the wall, and squeezed.”

Oscar Health is one of many commercial health insurers that use what are often called copay accumulator programs to keep funds that are meant to defray patients’ out-of-pocket costs for expensive specialty drugs. Over the past decade, more insurers have to reduce their prescription drug costs, according to Avalere Health, a consulting company.

Patients who rely on copay assistance from drugmakers are typically heavy users of healthcare for whom delays in treatment or worsening conditions can lead to higher costs, according to patient advocates.

, Florida market president for Oscar Health, did not comment on the specifics of Gruber’s case. He said the company uses copay accumulators to manage rising medical and prescription costs and “to keep monthly premiums as low as possible.”

Drugmakers argue that insurers and pharmacy benefit managers use copay accumulators and other strategies to delay or deny care and steer patients toward medicines that insurers prefer instead. Insurers counter that coupon cards and other patient financial assistance from drug manufacturers drive up premiums and encourage patients to use higher-priced, brand-name drugs instead of less-expensive generics.

Meanwhile, patient advocates say it’s difficult for consumers to find out if their plan uses a copay accumulator or to understand how they work. Not only do the programs make medications unaffordable for consumers, critics argue, but they allow insurers to double-dip.

“They’re collecting the money twice and they’re hurting patients,” said , executive director of the HIV+Hepatitis Policy Institute, a patient advocacy group.

“Why does it make a difference to Oscar if they get the money from a drug company or, you know, his mother or him?” he said of Gruber’s experience. “They’re still getting the money.”

Controlling Costs or Harming Patients?

Not all insurance types use copay accumulators. Medicare and Medicaid prohibit copay assistance because federal anti-kickback laws forbid drug manufacturers from offering financial incentives to influence patients’ choices. And the Internal Revenue Service prohibits such help for high-deductible plans with health savings accounts. But individual and commercial group plans can use them.

Regulation of copay accumulator programs has fallen largely to states, which oversee individual and small-group plans sold on the Affordable Care Act marketplace.

For 2026, of ACA marketplace plans have such a program, according to a review from The AIDS Institute, a nonprofit group that opposes the programs. Of the 16 insurers that sell plans on the marketplace in Florida, 10 use copay accumulator programs, the review found.

Patients who take brand-name specialty drugs for conditions such as autoimmune disorders, multiple sclerosis, diabetes, HIV, and cancer are most likely to encounter these programs. Health insurers say that making patients share the costs for specialty drugs encourages them to choose value over brand.

But Gruber doesn’t have a choice because there is no medically equivalent generic for Enbrel. Gruber’s livelihood as a trainer depends on his athleticism. The weekly injections, which he has to take for the rest of his life, prevent his joints from getting stiff. When he was diagnosed in 2010, Gruber said, he couldn’t shake hands or lift his knee to get into bed. Without treatment, he said, “I ache from my neck down to my toes.”

If manufacturers priced their drugs affordably, patients like Gruber wouldn’t need financial assistance, said , a senior vice president for AHIP, a trade association representing insurers.

“Drugmakers offer short-term ‘discounts’ to justify overcharging Americans in the long term, driving up healthcare costs for everyone,” he said in a statement. “Research shows limiting copay coupons can reduce premiums and lower consumers’ out-of-pocket costs.”

Sarah Ryan, a spokesperson for Pharmaceutical Research and Manufacturers of America, a trade association for the pharmaceutical industry, said copay assistance helps patients access medications free of charge or at reduced cost.

“Health insurance is supposed to protect patients,” Ryan said, adding that insurers and pharmacy benefit managers that refuse to count copay assistance toward cost sharing are “leaving patients facing unexpected costs and disrupting their care.”

Insurance companies already have tools to control costs without keeping financial assistance intended for patients, said , deputy executive director for The AIDS Institute.

Insurers choose what drugs to cover, whether they are medically necessary, and if a patient must try a cheaper alternative first.

“They are the ones making the decisions,” Klein said. “Now the individual is left trying to figure out how they’re going to pay for it.”

Consumers Stuck in the Middle

Before moving to Florida in 2024, Gruber said, he had bought coverage on the ACA marketplaces in Illinois and Louisiana, which prohibit copay accumulators. Gruber said he hadn’t encountered one until his experience with Oscar Health.

He complained to the office of Florida’s insurance consumer advocate, which informed him that the practice is legal in the state and that Oscar Health had disclosed its use of a copay accumulator program. Page 127 of his 168-page evidence of coverage states, “Third party assistance will not count towards your out-of-pocket maximum or deductible.”

Gruber said he selected his coverage using a tool on that listed all the Florida ACA plans that cover Enbrel. “I always choose the one with the highest deductible to get the lowest premium,” he said, “because I know I’m going to meet it.” His monthly premium is about $315 after subsidies.

Adding to Gruber’s confusion, he said, was that his patient portal with Oscar Health was counting his coupon card at first. He said he met his out-of-pocket maximum in February, and in March Oscar covered all the cost for the medication.

But when he ordered his refill for April, the pharmacy told him that Oscar would cover only $1,000 of the medication’s cost for that month. He would have to pay the remaining $6,700.

Gruber then received a letter from Oscar Health, telling him that an incorrect amount had been applied to his deductible.

“They sent me a letter that basically stated they made a mistake,” he said. “The fact that they’re allowed to sort of change things midstream is also, I think, a little galling.”

He began rationing the injections, taking them every other week instead of weekly. By May, he had dipped into his savings to pay for the drug.

States Step Up While Federal Oversight Stalls

The first state laws banning copay accumulators were adopted in 2019, and since then more states have moved to regulate the programs, said , public policy director for the Alliance for Patient Access, an advocacy group.

“The goal is to build upon that progress at the federal level and to continue to drive this momentum forward,” he said.

Twenty-six states, Washington, D.C., and Puerto Rico have adopted laws banning copay accumulators or prohibiting them for drugs that do not have a generic equivalent. Colorado also prohibits copay accumulators for drugs without a biosimilar. In states that have not banned or restricted the programs, insurance companies decide whether to use them.

But federal regulation of the programs, which would apply to all states, remains at a standstill.

A federal court in 2023 struck down a policy enacted during President Donald Trump’s first term that had permitted insurers to use copay accumulator programs. As a result, the Department of Health and Human Services reverted to that restricts their use to brand-name drugs with a medically appropriate generic equivalent.

After the court ruling, the Biden administration pledged to address copay accumulators in future rulemaking. But HHS has yet to do so, said Schmid, whose group, the HIV+Hepatitis Policy Institute, led a coalition of patient advocacy groups that sued to overturn the rule.

“The Trump administration can stop this once and for all at the national level,” Schmid said. “If they really care about patient affordability, this is something they can do.”

Bipartisan legislation in Congress called the would require financial assistance to count toward deductibles and other out-of-pocket costs on plans regulated by the federal government, including much employer-sponsored coverage.

Schmid said the bill has not gotten “enough traction on the Hill yet.”

Other ways to obtain medication don’t help patients facing copay accumulators either. The president’s , an online platform through which consumers can buy prescription drugs at a discount, requires patients to pay out-of-pocket, and the cost does not count toward their plan’s cost-sharing requirements.

Christopher Krepich, a Centers for Medicare & Medicaid Services spokesperson, said that HHS, along with the departments of Labor and the Treasury, intend to address the issue of whether copay assistance must apply toward health plan cost sharing.

Until then, he wrote, “the Departments do not intend to take any enforcement action against health insurance issuers or group health plans based on their treatment of such manufacturer assistance.”

Outside of government regulation, consumers have few protections or alternatives.

Patients who rely on expensive medications — and who have a choice in their health insurance plan — should research their coverage options and choose wisely so they’re not caught by surprise, Clingham said.

That may mean reading plan benefit explanation packages, contacting their state’s insurance regulator, or calling an insurance company to ask if their plans use copay accumulator programs.

For Gruber, the extra expense means he won’t take a vacation this year. He’s also concerned that the money he was saving for a home will now go to his medication costs instead.

“It’s the first thing I think of when I wake up in the morning,” he said. “If this happens every year, it would be financially devastating.”

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

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Too sick to work? You may have to prove it. Next year, Medicaid recipients will have to start showing documentation such as a doctor’s note to avoid a new work requirement. ºÚÁϳԹÏÍø News correspondent Sam Whitehead broke down the rule and exceptions on WAMU’s Health Hub on July 1.

Study, work, or volunteer: That’s what many people will have to do to keep their Medicaid starting next year, according to new rules issued by the Trump administration. But consumer advocates worry the new requirements will catch many recipients flat-footed.

ºÚÁϳԹÏÍø News correspondent Sam Whitehead joined WAMU’s Health Hub on July 1 to explain who will be affected, who can get an exemption, and what enrollees can start doing now to prepare.

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We’re expecting our first baby boy in end of August. And when I think about what it’s going to feel like to take care of my wife and my new son and my mom, it’s a bit overwhelming.

If you are taking care of a child and you have a parent over 65, you’re among millions across the U.S. in the same life stage.

Nearly a quarter of all American adults — and half of all adults in their 40s — fall into this “sandwich generation” category, . And being in the middle of that sandwich can feel … intense.

“I have kind of prided myself on being self-sufficient. And in this season of life, that’s almost been laughable,” said Jason McAnally, a Nashville father of two who helps care for his aging dad.

HealthQ hosts Cara Anthony of ºÚÁϳԹÏÍø News and Blake Farmer of Nashville Public Radio, both in the sandwich generation themselves, are your approachable guides to an unapproachable healthcare system. In this one-hour special about navigating health and caregiving, they tap researchers, physicians, experts, and their own personal experience to explore:

• Identity: When to start calling yourself a caregiver, and why it matters.
• FMLA: How to start a conversation with your boss about taking federally protected leave from work.
• Kids and mental health: How to know it’s time to take an anxious child to therapy.
• Early-onset cancer: What you need to know about spotting diseases that are on the rise among people under 50.

The HealthQ team acknowledges the messiness, the humor, and the beauty of this season of life. Come on the journey with us.

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This installment is part of HealthQ’s reporting on caregiving among the sandwich generation. For more, check out the series archive.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable healthcare system. It’s a collaboration between Nashville Public Radio and ºÚÁϳԹÏÍø News.

This <a target="_blank" href="/aging/healthq-special-sandwich-generation-caregiving-fmla-early-onset-cancer/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

More and more Americans are being exposed to these parasites as climate change expands the range where they can survive. That means more people are also exposed to the bevy of health conditions they can cause, such as Rocky Mountain spotted fever, the alpha-gal-triggered red meat allergy, and, most common of all, Lyme disease.

For the latter, there may be some additional protection on the horizon. Pharmaceutical companies Pfizer and Valneva they plan to seek regulatory approval for a vaccine to protect against Lyme disease. A for Lyme became available in the late 1990s but was pulled only three years later due to lawsuits, public fear of side effects, and a lack of interest.

It’s unclear whether this latest stab at a Lyme disease vaccine will get a warmer reception if it’s approved, especially in the postcovid era of vaccine skepticism.

For a sense of how it might go over with rural populations at high risk of Lyme, ºÚÁϳԹÏÍø News spoke with a group of hunters.

Few people spend more time in the woods exposed to ticks.

At the same time, as a collective, hunters , according to a survey from the Theodore Roosevelt Conservation Partnership. And these are identities increased or vaccines, according to Ashley Kirzinger, associate director for Public Opinion and Survey Research at KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News.

At the same time, few people spend more time in the woods exposed to ticks and the possibility of Lyme disease.

Left untreated, Lyme can cause a , from fevers, chills, and headaches to arthritis, shooting pains, and inflammation of the brain and spinal cord, according to the Centers for Disease Control and Prevention. About in the U.S. may be diagnosed and treated for Lyme disease each year, the CDC says; that’s at least in part because the where cases have been reported has “expanded significantly” since 1995.

So would hunters get the Lyme vaccine if it became available?

“Given my proclivity for the outdoors, absolutely,” said Jess Manganelli, one of seven hunters (and one hiker) who spoke with ºÚÁϳԹÏÍø News on a recent Saturday at the Busch Shooting Range in Weldon Spring, Missouri, just outside of St. Louis.

Of the eight, Manganelli, who had been hunting turkeys the weekend before, was the most positive toward the vaccine. Six others said they would consider it but would want more information about its safety and effectiveness as well as their risk for contracting the disease.

But Manganelli was the only one who believed she may have previously contracted Lyme disease, although she was never formally diagnosed with it. Two years ago, she experienced muscle weakness, tiredness, fatigue, swelling, and headaches after a tick bite, but when she went to urgent care she was told they didn’t test for Lyme.

Nearly all the hunters knew someone who had had Lyme disease — an old roommate, a family member, friends, a former student. Lyme can be and to treat and is often misdiagnosed at first. Many of the hunters witnessed their acquaintances navigating those challenges and struggling with sometimes debilitating symptoms.

That familiarity among the hunters in Missouri was unsurprising to author and conservationist Steven Rinella, host of the hunting show MeatEater.

“I’m a turkey hunter. In talking about turkey hunting, you talk about ticks as much as you talk about turkeys,” Rinella said. “Just the nature of turkey hunting puts you into exposure. You’re sitting for long periods of time trying to use vegetation for concealment.”

In fact, both Rinella and his older son contracted Lyme disease 13 years ago during a bluegill fishing trip in the Hudson Valley in New York. His son developed Bell’s palsy, a sudden paralysis on one side of the face, but recovered quickly after a course of oral antibiotics. Steven Rinella’s symptoms, on the other hand, lingered for months, leaving him unable to walk down stairs without a handrail or to ride a bike. He ended up receiving intravenous antibiotic treatments for a month.

“I thought my life had changed,” Rinella said, “but I recovered, as far as I know.”

That experience is one reason Rinella said he would absolutely consider getting a Lyme vaccine if it proved safe and provided considerable protection against the disease. Unlike with some other diseases, prior infection does not provide permanent immunity, so a person who has had Lyme could still benefit from a vaccine.

Knowledge of similar challenges influenced the thinking of the hunters in Missouri as well.

Jeremy Hollingshead said he may be less inclined to take a vaccine owing to his former roommate’s experience with Lyme disease, which is not to say the experience was pleasant. In fact, Hollingshead said he thinks his old pal is still dealing with lingering effects of it 10 years later. But Hollingshead has spent his whole life in the woods, and of hundreds of people he knows who have done the same, he knows of only one of them contracting Lyme.

“I know it was a bad outcome for him,” Hollingshead said, but he thinks the odds of getting Lyme himself seem pretty slim.

Meanwhile, Julian Barnes said seeing a relative struggle with Lyme makes him more open to a potential vaccine. It took a long time for doctors to come to that diagnosis, and finding a good treatment has been equally difficult.

“I would say I am vaccine-hesitant, generally speaking,” Barnes said. “But Lyme, I’ve seen the way it affects people in my life.”

“I would definitely have to really understand the vaccine, how it works,” Barnes added.

The new, four-dose vaccine candidate technically missed one of the bars set out in trials because Lyme. Still, the companies say it’s about 75% effective in reducing cases, and they plan to submit it to regulators for approval. A Pfizer spokesperson said there were no updates to share on the company’s regulatory efforts when contacted by ºÚÁϳԹÏÍø News in June.

Health and Human Services Secretary Robert F. Kennedy Jr. was a noted anti-vaccine activist before taking over as head of the agency that oversees vaccine approvals, and he’s remade it in ways that have prompted some vaccine makers to on development.

But he’s also been an advocate on Lyme disease. In May, he announced an . And during his Senate confirmation hearings, he said his family had been deeply affected by Lyme disease and that than he would to find a vaccine or treatment.

If the vaccine is approved by the FDA, an endorsement from Kennedy would go a long way, according to KFF’s Kirzinger, particularly among supporters of his Make America Healthy Again movement, who tend to be more vaccine-skeptical.

“They trust him as much as they trust their own doctors to tell them what to do with their health and for health information,” Kirzinger said. “If he comes out as a strong proponent of this vaccine and says, ‘Look what my administration did, and we made this available,’ I would imagine there would be less vaccine resistance among that group.”

Kirzinger also said this vaccine could be ripe for misinformation. New polling from KFF shows people who don’t have a trusted medical provider as well as those who use social media and AI for health information are common vaccine myths.

Only one of the hunters who spoke with ºÚÁϳԹÏÍø News said they definitely would not be interested in a Lyme vaccine if it became available.

“I kind of hand it off to God and the body he gave me. I’m pretty durable,” JP Cummings said. But even while he’s not interested in it for himself, he’s curious to see what his fellow hunters do as more information comes out.

“Hunters care about the wildlife; hunters care about health,” Cummings said. “They love the wildlife, they love their deer, and they love their fellow hunters.”

This <a target="_blank" href="/public-health/hunters-lyme-disease-vaccine-ticks-attitudes-missouri/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

WINSTON-SALEM, N.C. — Some issues, like immigration or student loans, are too divisive to unite Trinity Moravian Church.

“We’ve got quite a spread of political beliefs,” said the Rev. John Jackman, who leads this 114-year-old red-brick church near Winston-Salem’s old textile mills. Conservative Republicans sit with liberal Democrats. Supporters of President Donald Trump mix with his fierce critics. “It’s definitely a purple congregation,” Jackman said.

But four years ago, when Jackman suggested a new church mission to alleviate medical debt for residents of the wider Winston-Salem area, there was no dissent. “This is the easiest money I’ve ever raised,” he said. “All I do is tell people what we’re doing, and they write me a check.”

Few issues have been more politically explosive in recent years than healthcare, pitting Democrats and Republicans in bitter debates over the Affordable Care Act, Medicaid, and other flash points.

Yet moved by the sense that the medical debts their neighbors faced were deeply unfair, members of Trinity Moravian, no matter their politics, rushed to write $25 or $50 checks to pay off the bills.

They helped advance a movement by churches across the state and the country and inspired North Carolina government officials to tackle medical debt. The effort drew plaudits from conservative radio host Glenn Beck.

The little church’s success also highlighted a patch of common ground in American healthcare — widespread anxiety and frustration that so many patients are ending up in debt.

Earlier this year, Trinity wrapped up its eighth medical debt campaign, part of what the church calls its Debt Jubilee Project. This one raised more than $17,000. That helped retire more than $2.2 million in debt. Medical debt can be bought for pennies on the dollar because creditors believe most debts won’t be paid.

Nationwide, an estimated 100 million adults have some form of healthcare debt. More than half of U.S. adults have had such debt at some point.

At Trinity Moravian Church, which has about 200 members, it wasn’t hard to find stories of crushing medical bills.

“I see people going into debt every minute of every day,” said Catherine Coe, who works in the accounting department of a hospital system. “We’re all just one medical bill from financial ruin.”

Coe grew up coming to Trinity with her grandmother. She drifted away from the church as an adult before rejoining the congregation last year. Coe, who describes herself as a conservative, voted for Trump.

Terri Mabe, who’s been coming to Trinity for decades, is on the other side of the nation’s political divide. She said she can’t stand the president, who she said “had no real concern for the people of this country.”

Mabe, 70, has also seen medical debt up close. She used to work in the construction industry.

“In between projects you are a lot of times without a job,” she said. “Then you get sick. Next thing you know, you owe $5,000, $10,000 that you cannot pay. You’re barely paying your home bills. Then you’re like: ‘I can’t pay it. What do I do now?’”

Both Coe and Mabe said partisan differences don’t matter. “There isn’t a political divide when it comes to medical debt,” Coe said. “It all brings us together.”

Jackman said he got the idea to do something about medical debt during the pandemic, when growing numbers of people turned to the church for help.

“I was hearing about the reason they couldn’t pay their electric bill was because they’d had a few days in the hospital and then they got hit with this huge bill and it snowballed,” he recalled. “And I started hearing this again and again and again.”

Jackman learned about a nonprofit called Undue Medical Debt that buys unpaid medical bills from hospitals and debt collectors so the debts can be retired.

The church’s first campaign, in 2022, set a goal of raising $5,000 to retire about $500,000 in medical debt owed by residents of surrounding Forsyth County. The campaign hit its goal in just six weeks, fueled mostly by donations of less than $50.

Jackman, who’s been a pastor for more than four decades, attributed part of the success to an ethos of the church. “One of our ideas is that we cannot fix everything, but we have to fix what we can in the place where we’re planted,” he said.

Trinity members, no matter their political leanings, also said they see something broken in a system that pushes sick people into debt.

Paul Sluder, 78, who doesn’t identify with a political party, used to work for a credit union. He said he did a lot of debt collecting before he retired.

Most people, he said, wanted to pay what they owed. If they got sick, they often had no choice but to go into debt.

“You have kind of no control. You have to take care of yourself or your loved ones,” Sluder said. “It’s incredibly unfair, and I think the system’s out of whack.”

Polls suggest there’s a lot of common ground around medical debt.

In a for Undue Medical Debt, more than 75% of Republicans and Democrats said collection agencies shouldn’t be allowed to garnish patients’ wages to pay medical debt. And in recent years, bipartisan measures to expand protections from medical debt have passed in blue and red states.

Coe, a Republican, said she would support even more limits on how much medical debt people could be forced to carry. “Why can’t we cap medical debt at a certain dollar amount, and after that it’s either written off or forgiven?” she asked.

After completing the most recent debt campaign, Trinity hosted a special ceremony, assisted by kids from a local Scouting group.

Jackman stood before the congregation and held up a piece of paper with a long list of names, people in the county whose debt had been bought and retired by the church.

“On this day of Jubilee,” Jackman announced, “we act to forgive the debts of many of our neighbors as God has forgiven our debts.”

As the congregation stood, Jackman flicked on a lighter and burned the list of 1,631 names. The paper was consumed by yellow flame. The scouts set off confetti poppers. The choir sang, and the congregation erupted in cheers.

Afterward, members went downstairs for a spaghetti lunch in the church basement, served by the scouts.

Reflecting on the day’s festivities, many members of the congregation said they hoped their work on medical debt could inspire others to bridge political differences and work together.

“There’s just so much division, so much anger,” said Cynthia Tesh, 72.

“We need to look out for one another,” she said. “If we start looking out for one another, things will change. If we start considering other people and not just ourselves, things will change.”

This <a target="_blank" href="/insurance/medical-debt-common-ground-church-north-carolina/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">