Kaiser Health News

Emily Gebel was trying to figure out why she was having trouble breastfeeding. That’s when she felt a lump.

Gebel, a mother of two children, went to her primary care doctor in Juneau, Alaska, who referred her for testing, she said.

Her 9-month-old was asleep in her arms when she got the results.

“I got the call from my primary care nurse telling me it was cancer. And I remember I just sat there for probably at least another half an hour or so and cried,” Gebel said.

Juneau, the state capital, has about 31,700 residents, who are served by the city-owned Bartlett Regional Hospital. But Gebel said she has several friends who have also had cancer, all of whom recommended she seek treatment out of town because they felt bigger cities would have better care.

She opted for treatment in Seattle, the closest major American city to Alaska. She underwent surgery at Virginia Mason Medical Center in September 2022. In January, she began chemotherapy at Lifespring Cancer Treatment Center, a stand-alone clinic that she said she selected because it offers a lower-dose chemotherapy.

During chemo, she learned she had stage 4 breast cancer, she said.

Commuting to Seattle for chemo every week — nonstop flights last as long as two hours and 45 minutes — became tiring. So Gebel began treatment at Bartlett Regional Hospital after her Seattle doctor taught hospital staffers there how to administer her chemo regimen.

Then the bill came.

The patient: Emily Gebel, 37, insured through her husband’s employer by Premera Blue Cross. She was previously covered by Moda Health.

Medical service: One round of metronomic chemotherapy, which involves regular infusions at lower but more frequent doses and over a longer period than traditional chemotherapy.

Service provider: Bartlett Regional Hospital and Lifespring Cancer Treatment Center. The hospital is a tax-exempt facility owned by the city and borough of Juneau, though most of its revenue comes from the services it provides, according to hospital officials. Lifespring is a stand-alone, doctor-owned cancer clinic in Seattle.

Total bill: The prices for Emily’s chemo infusions at Bartlett Regional Hospital varied week to week. A hospital bill showed one infusion in July was listed at $5,077.28 — more than three times the price for a similar mix of drugs at the Seattle clinic, $1,611.24.

What gives: In the United States, the price for the same medical service can vary based on where it is received. And for those living in remote areas like Alaska, the price difference can put care further out of reach.

Emily’s firsthand experience with this disparity began after her husband, Jered, requested a cost estimate from Bartlett Regional Hospital. It said Emily’s chemo would cost around $7,500 per weekly infusion, more than 4½ times what she had been charged in Seattle.

“The email came through with the bill estimate, and it’s like, ‘Oh my goodness, this has to be wrong,'” Jered said.

Jered said Emily had met her annual out-of-pocket maximum, meaning her insurance would cover the costs of her treatment, but from the start, the disparity just bothered him.

When Emily received a bill for a few rounds of her weekly chemo treatments, it showed that the hospital charged more than triple what the Seattle clinic did for a round of chemo, asking higher prices for every related service and medication she received that week.

The hospital charged about $1,000 for the first hour of chemo infusion, which is more than twice the rate at the Seattle clinic. One of Emily’s drugs cost $714, more than three times the price at the clinic.

It was even the tiniest things: The hospital charged $19.15 for Benadryl, about 22 times the clinic’s price of 87 cents.

Staff at Lifespring Cancer Treatment Center, the Seattle clinic, did not reply to requests for comment.

Sam Muse, the hospital’s former chief financial officer who no longer works there, said Bartlett Regional Hospital officials determined prices by looking at average wholesale prices and what other facilities in the region charge. Muse said the hospital had to account for high operating costs.

“Anything that we charge certainly has to take into consideration … the cost of just supplying healthcare in a rural setting like Juneau,” Muse said. “We’re not accessible by road at all, only ferry or plane.”

Juneau’s isolated geography makes reaching many resources a challenge. The city is part of the Alaska Panhandle, a narrow, island-speckled sliver of the state wedged between Canada, the Pacific Ocean, and Glacier Bay National Park & Preserve. Neither Anchorage nor Vancouver, its nearest major cities, is close by.

The hospital — the only one in the city and largest in the panhandle — treats a small number of cancer patients, at least a few hundred last year, Muse said. Its two oncologists live outside the city and fly into Juneau six times a month, said Erin Hardin, a hospital spokesperson.

Bartlett spent nearly $11 million last year to pay and fly in nurses, doctors, and other staffers who live outside the city, Muse said.

We’re “trying to find that happy medium between keeping care here and keeping costs down and how do we do that in a sustainable way for the long term,” Muse said.

Even though research shows Alaskans seek emergency care and are admitted to the hospital less often than many Americans, they had the third-highest health care expenditures per capita in 2020.

“Alaska is special in that it’s small, it’s remote, therefore it’s more expensive,” said Mouhcine Guettabi, an associate professor of economics at the University of North Carolina-Wilmington who studied health care costs in Alaska when he taught there.

Guettabi said hospitals often need to offer higher wages to recruit doctors and nurses willing to live in Alaska, which has a higher cost of living than most states.

Towns or entire regions may have few specialists and only one hospital, creating a dearth of competition that may drive up costs, Guettabi said. It’s also more expensive to ship items there, including medical supplies.

But Alaska’s costs are higher even when taking all those factors into account, Guettabi said. In Anchorage, for instance, prices for medical items increased nearly three times faster from 1991 through 2017 than prices overall.

Alaska also has a unique policy that may be increasing prices. Its “80th percentile rule” was enacted in 2004 to limit the amount of money patients pay when treated by providers outside their health insurers’ network. But like many experiments meant to rein in costs, the rule has instead been increasing health care spending, according to a study by Guettabi.

“Critics think the rule may be adding to that soaring spending, partly because over time providers could increase their charges — and insurance payments would have to keep pace,” the study noted.

The resolution: Emily received a bill from the hospital in September, more than five months after beginning treatment there.

It said Emily owed about $3,100 even though a previous explanation of benefits said she’d met her out-of-pocket limit.

Jered said he contacted hospital billing officials, who discovered that a medicine had been incorrectly coded and told Jered that Emily’s charge was zero.

“We know how hard it is to pay these ridiculous medical bills,” Jered said. “If I’m able to push back a little bit against this massive system, well, hey, maybe other people can, too. And who knows, maybe eventually health care prices can come down.”

Emily said she’s glad Jered knows how to handle the financial aspects of her care. Like many Americans, she could have just paid or ignored the incorrect bills, risking being sent to collections.

“I can’t imagine the amount of time I would have to spend on it while juggling parenting and also dealing with completing treatment, going through the sickness that goes along with that, and just generally feeling very run down,” she said.

The takeaway: Alaska government officials, nonprofits, and experts have suggested methods to lower the cost of health care. The state is considering repealing the 80^th percentile rule and implementing value-based care, which emphasizes paying providers based on health outcomes.

But what should Alaskans and other patients do in the meantime? If you live in a high-cost state, you might check out prices at a health care system in a state next door.

In any case, get ready to advocate for yourself.

Jered learned about medical billing by following the Bill of the Month series and reading “Never Pay the First Bill,” a book by Marshall Allen, a former ProPublica reporter.

Request itemized bills and make sure the codes match the services you received, Jered said. Note any prices that seem outrageous. If you have concerns, arrange an in-person meeting with an official in the provider’s finance department. If that’s not possible, a phone call is better than email. Make sure to document all conversations, so you have a record.

Come prepared with your documents and evidence, including the rate paid by Medicare, the federal insurance system for those 65 and older. Ask the official to explain the reasons for the codes and pricing before contesting anything. You can sometimes negotiate high-priced services down. And remember that the person you’re speaking with isn’t to blame for your health care costs.

“Don’t come at them angry, don’t come at them as viewing them as the enemy — because they’re not,” Jered said. “They are working within the same broken system.”

Emmarie Huetteman of KFF Health News edited the digital story, and Taunya English of KFF Health News edited the audio story. NPR’s Will Stone edited the audio and digital story.

KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.

Copyright 2023 KFF Health News. To see more, visit KFF Health News.

For the first time since 2019, congressional gridlock is poised to at least temporarily shut down big parts of the federal government — including many health programs.

If it happens, some government functions would stop completely and some in part, while others wouldn’t be immediately affected — including Medicare, Medicaid and health plans sold under the Affordable Care Act. But a shutdown would complicate the lives of everyone who interacts with any federal health program, as well as the people who work at the agencies administering them.

Here are five things to know about the potential impact to health programs:

1. Not all federal health spending is the same.

“Mandatory” spending programs, like Medicare, have permanent funding and don’t need Congress to act periodically to keep them running. But the Department of Health and Human Services is full of “discretionary” programs — including at the National Institutes of Health, Centers for Disease Control and Prevention, community health centers and HIV/AIDS initiatives — that must be specifically funded by Congress through annual appropriations bills.

The appropriations bills (there are 12 of them, each covering various departments and agencies) are supposed to be passed by both chambers of Congress and signed by the president before the start of the federal fiscal year, Oct. 1. This almost never happens. In fact, according to the Pew Research Center, Congress has passed all the appropriations bills in time for the start of the fiscal year only four times since the modern budget process was adopted in the 1970s; the last time was in 1997.

Congress usually keeps the lights on for the government by passing short-term funding bills, known as “continuing resolutions,” or CRs, until lawmakers can resolve their differences on longer-term spending.

This year, however, a handful of conservative Republicans in the House have said they won’t vote for any CR, in an attempt to force deeper spending cuts than those agreed to this spring in a bipartisan bill to raise the nation’s borrowing authority. House Speaker Kevin McCarthy and his allies could join with Democrats to keep the government running, but that would almost certainly cost McCarthy his speakership. Several of the rebellious conservatives are already threatening to force a vote to oust him.

2. The Biden administration decides what stays open.

The White House Office of Management and Budget is responsible for drawing up contingency plans in case of a government shutdown and publishes one for each federal department. The plan for Health and Human Services estimates that 42 percent of its staff would be furloughed in a shutdown and 58 percent retained.

The general rule is that two types of activities may continue absent annual spending authority from Congress. One is activities needed “for safety of human life or the protection of property.” At HHS, that would include caring for patients at the hospital on the campus of the National Institutes of Health — though new patients generally would not be admitted — as well as the agency’s laboratory animals, and CDC investigations of disease outbreaks.

Other activities that may continue are those with funding sources that aren’t dependent on annual appropriations. Medicare and Social Security, for example, are entitlements funded by taxes and premiums. Drug approvals at the Food and Drug Administration are largely funded by user fees paid by drugmakers, so approvals in process can continue but there are questions about whether new approval processes could start.

Also unaffected are programs that have been funded in advance by Congress. For example, the Indian Health Service is already funded through the 2024 fiscal year.

3. What happens to enrollment in Medicare and Affordable Care Act plans?

It depends on how long the shutdown lasts. In the short term, mandatory spending programs would be mostly, but not completely, unaffected by a government shutdown. Benefits would continue under programs like Medicare, Medicaid and the Affordable Care Act, and doctors and hospitals could continue to submit bills and get paid. But federal staff not considered “essential” would be furloughed.

That means initial Medicare enrollment could be temporarily stopped. According to the Committee for a Responsible Federal Budget, an independent group that tracks federal spending, during the 1995-96 federal shutdown, “more than 10,000 Medicare applicants were temporarily turned away every day of the shutdown.”

A shutdown shouldn’t much affect Medicare’s annual open enrollment period, which starts Oct. 15 and allows current beneficiaries to join or change private Medicare Advantage or prescription drug plans. That’s because much of the funding to help seniors and other beneficiaries choose or change Medicare health plans has already been allocated.

Rebecca Kinney, who runs the HHS office that oversees the federal program that counsels Medicare beneficiaries about their myriad choices, said Friday that funding for both the 1-800-MEDICARE hotline and federally funded state counseling agencies has already been distributed for this year, so neither would be affected, at least in the short run.

The same is true for Affordable Care Act plans, which open for enrollment on Nov. 1. The HHS contingency documents say the Centers for Medicare & Medicaid Services, which oversees the federal health exchange, HealthCare.gov, “will continue Federal Exchange activities, such as eligibility verification,” using fees paid by insurers left over from the previous year.

Still, about half of CMS staff would be furloughed in a shutdown. That could complicate a lot of other activities there, starting with drug price negotiations set to begin Oct. 1. HHS Secretary Xavier Becerra told reporters at the White House last week that a shutdown would likely push back the timeline for negotiations.

A shutdown would also threaten HHS oversight of the Medicaid “unwinding” process, as states reevaluate the eligibility of those enrolled in the program for low-income people. State workers would be unaffected, according to the Georgetown University Center for Children and Families, so eligibility reviews will continue regardless. But because of federal furloughs, “technical assistance to help states address unwinding problems and adopt mitigation strategies could cease,” wrote the center’s Kelly Whitener and Edwin Park. “Efforts to determine if there are further renewal processes that are out of compliance with federal requirements could be limited or ended.”

4. What if the shutdown is prolonged?

More programs could be affected. For example, the HHS shutdown contingency document says that “CMS will have sufficient funding for Medicaid to fund the first quarter” of fiscal year 2024. The government has never been shut down long enough to know what would happen after that. The 2013 shutdown, which included HHS, lasted just over two weeks. Most of the agency wasn’t affected by the 2018-19 shutdown because its annual appropriations bill had already been signed into law. (The FDA is funded under the appropriations bill that covers the Agriculture Department rather than the one that funds HHS.)

5. Do federal employees get paid during a shutdown?

It depends. Employees whose programs are funded continue to work and be paid. Those considered “essential” but whose programs are not funded would continue to work, but they wouldn’t get paid until after the shutdown ends. A 2019 law now requires federal workers to get back pay when funding resumes, which was not always the case. However, federal contractors, including those who work in food service or maintenance jobs, have no such guarantee.

KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.

Gary Flook served in the Air Force for 37 years, as a firefighter at the now-closed Chanute Air Force Base in Illinois and the former Grissom Air Force Base in Indiana, where he regularly trained with aqueous film forming foam, or AFFF — a frothy white fire retardant that is highly effective but now known to be toxic.

Flook volunteered at his local fire department, where he also used the foam, unaware of the health risks it posed. In 2000, at age 45, he received devastating news: He had testicular cancer, which would require an orchiectomy followed by chemotherapy.

Hundreds of lawsuits, including one by Flook, have been filed against companies that make firefighting products and the chemicals used in them.

And multiple studies show that firefighters, both military and civilian, have been diagnosed with testicular cancer at higher rates than people in most other occupations, often pointing to the presence of perfluoroalkyl and polyfluoroalkyl substances, or PFAS, in the foam.

But the link between PFAS and testicular cancer among service members was never directly proven — until now.

A new federal study for the first time shows a direct association between PFOS, a PFAS chemical, found in the blood of thousands of military personnel and testicular cancer.

Using banked blood drawn from Air Force servicemen, researchers at the National Cancer Institute and Uniformed Services University of the Health Sciences found strong evidence that airmen who were firefighters had elevated levels of PFAS in their bloodstreams and weaker evidence for those who lived on installations with high levels of PFAS in the drinking water. And the airmen with testicular cancer had higher serum levels of PFOS than those who had not been diagnosed with cancer, said study co-author Mark Purdue, a senior investigator at NCI.

“To my knowledge,” Purdue said, “this is the first study to measure PFAS levels in the U.S. military population and to investigate associations with a cancer endpoint in this population, so that brings new evidence to the table.”

In a commentary in the journal Environmental Health Perspectives, Kyle Steenland, a professor at Emory University’s Rollins School of Public Health, said the research “provides a valuable contribution to the literature,” which he described as “rather sparse” in demonstrating a link between PFAS and testicular cancer.

More studies are needed, he said, “as is always the case for environmental chemicals.”

Not ‘Just Soap and Water’

Old stocks of AFFF that contained PFOS were replaced in the past few decades by foam that contains newer-generation PFAS, which now also are known to be toxic. By congressional order, the Department of Defense must stop using all PFAS-containing foams by October 2024, though it can keep buying them until this October. That’s decades after the military first documented the chemicals’ potential health concerns.

A DoD study in 1974 found that PFAS was fatal to fish. By 1983, an Air Force technical report showed its deadly effects on mice.

But given its effectiveness in fighting extremely hot fires, like aircraft crashes and shipboard blazes, the Defense Department still uses it in operations. Rarely, if ever, had the military warned of its dangers, according to Kevin Ferrara, a retired Air Force firefighter, as well as several military firefighters who contacted KFF Health News.

“We were told that it was just soap and water, completely harmless,” Ferrara said. “We were completely slathered in the foam — hands, mouth, eyes. It looked just like if you were going to fill up your sink with dish soap.”

Photos released by the Defense Visual Information Distribution Service in 2013 show personnel working in the foam without protective gear. The description calls the “small sea of fire retardant foam” at Travis Air Force Base in California “non-hazardous” and “similar to soap.”

“No people or aircraft were harmed in the incident,” it reads.

There are thousands of PFAS chemicals, invented in the 1940s to ward off stains and prevent sticking in industrial and household goods. Along with foam used for decades by firefighters and the military, the chemicals are in makeup, nonstick cookware, water-repellent clothing, rugs, food wrappers, and a myriad of other consumer goods.

Known as “forever chemicals,” they do not break down in the environment and do accumulate in the human body. Researchers estimate that nearly all Americans have PFAS in their blood, exposed primarily by groundwater, drinking water, soil, and foods. A recent U.S. Geological Survey study estimated that at least 45% of U.S. tap water has at least one type of forever chemical from both private wells and public water supplies.

Health and environmental concerns associated with the chemicals have spurred a cascade of lawsuits, plus state and federal legislation that targets the manufacturers and sellers of PFAS-laden products. Gary Flook is suing 3M and associated companies that manufactured PFAS and the firefighting foam, including DuPont and Kidde-Fenwal.

Congress has prodded the Department of Defense to clean up military sites and take related health concerns more seriously, funding site inspections for PFAS and mandating blood testing for military firefighters. Advocates argue those actions are not enough.

“How long has [DoD] spent on this issue without any real results except for putting some filters on drinking water?” said Jared Hayes, a senior policy analyst at the Environmental Working Group. “When it comes to cleaning up the problem, we are in the same place we were years ago.”

On a Mission to Get Screening

The Department of Veterans Affairs does not recommend blood testing for PFAS, stating on its website that “blood tests cannot be linked to current or future health conditions or guide medical treatment decisions.”

But that could change soon. Rep. Dan Kildee (D-Mich.), co-chair of the congressional PFAS Task Force, in June introduced the Veterans Exposed to Toxic PFAS Act, which would require the VA to treat conditions linked to exposure and provide disability benefits for those affected, including for testicular cancer.

“The last thing [veterans] and their families need to go through is to fight with VA to get access to benefits we promised them when they put that uniform on,” Kildee said.

Evidence is strong that exposure to PFAS is associated with health effects such as decreased response to vaccines, kidney cancer, and low birth weight, according to an expansive, federally funded report published last year by the National Academies of Sciences, Engineering, and Medicine. The nonprofit institution recommended blood testing for communities with high exposure to PFAS, followed by health screenings for those above certain levels.

It also said that, based on limited evidence, there is “moderate confidence” of an association between exposure and thyroid dysfunction, preeclampsia in pregnant women, and breast and testicular cancers.

The new study of Air Force servicemen published July 17 goes further, linking PFAS exposure directly to testicular germ cell tumors, which make up roughly 95% of testicular cancer cases.

Testicular cancer is the most commonly diagnosed cancer among young adult men. It is also the type of cancer diagnosed at the highest rate among active military personnel, most of whom are male, ages 18 to 40, and in peak physical condition.

That age distribution and knowing AFFF was a source of PFAS contamination drove Purdue and USUHS researcher Jennifer Rusiecki to investigate a possible connection.

Using samples from the Department of Defense Serum Repository, a biobank of more than 62 million blood serum specimens from service members, the researchers examined samples from 530 troops who later developed testicular cancer and those of 530 members of a control group. The blood had been collected between 1988 and 2017.

A second sampling collected four years after the first samples were taken showed the higher PFOS concentrations positively associated with testicular cancer.

Ferrara does not have testicular cancer, though he does have other health concerns he attributes to PFAS, and he worries for himself and his fellow firefighters. He recalled working at Air Combat Command headquarters at Joint Base Langley-Eustis in Virginia in the early 2010s and seeing emails mentioning two types of PFAS chemicals: PFOS and perfluorooctanoic acid, or PFOA.

But employees on the base remained largely unfamiliar with the jumble of acronyms, Ferrara said.

Even as the evidence grew that the chemicals in AFFF were toxic, “we were still led to believe that it’s perfectly safe,” Ferrara said. “They kept putting out vague and cryptic messages, citing environmental concerns.”

When Ferrara was working a desk job at Air Combat Command and no longer fighting fires, his exposure likely continued: Joint Base Langley-Eustis is among the top five most PFAS-contaminated military sites, according to the EWG, with groundwater at the former Langley Air Force Base registering 2.2 million parts per trillion for PFOS and PFOA.

According to the EPA, just 40 parts per trillion would “warrant further attention,” such as testing and amelioration.

The Defense Department did not provide comment on the new study.

Air Force officials told KFF Health News that the service has swapped products and no longer allows uncontrolled discharges of firefighting foam for maintenance, testing, or training.

“The Department of the Air Force has replaced Aqueous Film Forming Foam, which contained PFAS, with a foam that meets Environmental Protection Agency recommendations at all installations,” the Air Force said in a statement provided to KFF Health News.

Both older-generation forever chemicals are no longer made in the U.S. 3M, the main manufacturer of PFOS, agreed to start phasing it out in 2000. In June, the industrial giant announced it would pay at least $10.3 billion to settle a class-action suit.

Alarmed over what it perceived as the Defense Department’s unwillingness to address PFAS contamination or stop using AFFF, Congress in 2019 ordered DoD to offer annual testing for all active-duty military firefighters and banned the use of PFAS foam by 2024.

According to data provided by DoD, among more than 9,000 firefighters who requested the tests in fiscal year 2021, 96% had at least one of two types of PFAS in their blood serum, with PFOS being the most commonly detected at an average level of 3.1 nanograms per milliliter.

Readings between 2 and 20 ng/mL carry concern for adverse effects, according to the national academies. In that range, it recommends people limit additional exposure and screen for high cholesterol, breast cancer, and, if pregnant, high blood pressure.

According to DoD, 707 active and former defense sites are contaminated with PFAS or have had suspected PFAS discharges. The department is in the early stages of a decades-long testing and cleaning process.

More than 3,300 lawsuits have been filed over AFFF and PFAS contamination; beyond 3M’s massive settlement, DuPont and other manufacturers reached a $1.185 billion agreement with water utility companies in June.

Attorneys general from 22 states have urged the court to reject the 3M settlement, saying in a filing July 26 it would not adequately cover the damage caused.

For now, many firefighters, like Ferrara, live with anxiety that their blood PFAS levels may lead to cancer. Flook declined to speak to KFF Health News because he is part of the 3M class-action lawsuit. The cancer wreaked havoc on his marriage, robbing him and his wife, Linda, of “affection, assistance, and conjugal fellowship,” according to the lawsuit.

Congress is again trying to push the Pentagon. This year, Sen. Jeanne Shaheen (D-N.H.) reintroduced the PFAS Exposure Assessment and Documentation Act, which would require DoD to test all service members — not just firefighters — stationed at installations with known or suspected contamination as part of their annual health checkups as well as family members and veterans.

The tests, which aren’t covered by the military health program or most insurers, typically cost from $400 to $600.

In June, Kildee said veterans have been stymied in getting assistance with exposure-related illnesses that include PFAS.

“For too long, the federal government has been too slow to act to deal with the threat posed by PFAS exposure,” Kildee said. “This situation is completely unacceptable.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The rush in conservative states to ban abortion after the overturn of Roe v. Wade is resulting in a startling consequence that abortion opponents may not have considered: fewer medical services available for all women living in those states.

Doctors are showing — through their words and actions — that they are reluctant to practice in places where making the best decision for a patient could result in huge fines or even a prison sentence. And when clinics that provide abortions close their doors, all the other services offered there also shut down, including regular exams, breast cancer screenings, and contraception.

The concern about repercussions for women’s health is being raised not just by abortion rights advocates. One recent warning comes from Jerome Adams, who served as surgeon general in the Trump administration and is now working on health equity issues at Purdue University in Indiana.

In a recent tweet thread, Adams wrote that “the tradeoff of a restricted access (and criminalizing doctors) only approach to decreasing abortions could end up being that you actually make pregnancy less safe for everyone, and increase infant and maternal mortality.”

Medical ‘brain drain’

An early indication of that impending medical “brain drain” came in February, when 76% of respondents in a survey of more than 2,000 current and future physicians say they would not even apply to work or train in states with abortion restrictions. “In other words,” wrote the study’s authors in an accompanying article, “many qualified candidates would no longer even consider working or training in more than half of U.S. states.”

Indeed, states with abortion bans saw a larger decline in medical school seniors applying for residency in 2023 compared with states without bans, according to a study from the Association of American Medical Colleges. While applications for OB-GYN residencies are down nationwide, the decrease in states with complete abortion bans was more than twice as large as those with no restrictions (10.5% vs. 5.2%).

That means fewer doctors to perform critical preventive care like Pap smears and screenings for sexually transmitted diseases, which can lead to infertility.

Care for pregnant women specifically is at risk, as hospitals in rural areas close maternity wards because they can’t find enough professionals to staff them — a problem that predated the abortion ruling but has only gotten worse since.

In March, Bonner General Health, the only hospital in Sandpoint, Idaho, announced it would discontinue its labor and delivery services, in part because of “Idaho’s legal and political climate” that includes state legislators continuing to “introduce and pass bills that criminalize physicians for medical care nationally recognized as the standard of care.”

Amplified risks

Heart-wrenching reporting from around the country shows that abortion bans are also imperiling the health of some patients who experience miscarriage and other nonviable pregnancies. Earlier this year, a pregnant woman with a nonviable fetus in Oklahoma was told to wait in the parking lot until she got sicker after being informed that doctors “can’t touch you unless you are crashing in front of us.”

A study from University of Buffalo researchers in the Women’s Health Issues journal finds that doctors practicing in states that restrict abortion are less likely than those in states that allow abortion to have been trained to perform the same early abortion procedures that are used for women experiencing miscarriages early in pregnancy.

But it’s more than a lack of doctors that could complicate pregnancies and births. States with the toughest abortion restrictions are also the least likely to offer support services for low-income mothers and babies. Even before the overturn of Roe, a report from the Commonwealth Fund, a nonpartisan research group, found that maternal death rates in states with abortion restrictions or bans were 62% higher than in states where abortion was more readily available.

Women who know their pregnancies could become high-risk are thinking twice about getting or being pregnant in states with abortion restrictions. Carmen Broesder, an Idaho woman who chronicled her difficulties getting care for a miscarriage in a series of viral videos on TikTok, told ABC News she does not plan to try to get pregnant again.

“Why would I want to go through my daughter almost losing her mom again to have another child?” she said. “That seems selfish and wrong.”

Make birth free?

The anti-abortion movement once appeared more sensitive to arguments that its policies neglect the needs of women and children. An icon of the anti-abortion movement — Rep. Henry Hyde (R-Ill.), who died in 2007 — made a point of partnering with liberal Rep. Henry Waxman (D-Calif.) on legislation to expand Medicaid coverage and provide more benefits to address infant mortality in the late 1980s.

Few anti-abortion groups are following that example by pushing policies to make it easier for people to get pregnant, give birth, and raise children. Most of those efforts are flying under the radar.

This year, Americans United for Life and Democrats for Life of America put out a joint position paper urging policymakers to “make birth free.” Among their suggestions are automatic insurance coverage, without deductibles or copays, for pregnancy and childbirth; eliminating payment incentives for cesarean sections and in-hospital deliveries; and a “monthly maternal stipend” for the first two years of a child’s life.

“Making birth free to American mothers can and should be a national unifier in a particularly divided time,” says the paper. Such a policy could not only make it easier for people to start families, but it could address the nation’s dismal record on maternal mortality.

But a make-birth-free policy seems unlikely to advance very far or very quickly in a year when the same Republican lawmakers who support a national abortion ban are even more vehemently pushing for large federal budget cuts in the debt ceiling fight.

That leaves abortion opponents at something of a crossroads: Will they follow Hyde’s example and champion policies that expand and protect access to care? Or will women’s health suffer under the movement’s victory?

KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.

Copyright 2023 KFF Health News. To see more, visit KFF Health News.

After spending 38 years in the Alabama prison system, one of the most violent and crowded in the nation, Larry Jordan feels lucky to live long enough to regain his freedom.

The decorated Vietnam War veteran had survived prostate cancer and hepatitis C behind bars when a judge granted him early release late last year.

“I never gave up hope,” says Jordan, 74, who lives in Alabama. “I know a lot of people in prison who did.”

At least 6,182 people died in state and federal prisons in 2020, a 46% jump from the previous year, according to data recently released by researchers from the UCLA Law Behind Bars Data Project.

“During the pandemic, a lot of prison sentences became death sentences,” says Wanda Bertram, a spokesperson for the Prison Policy Initiative, a nonprofit that conducts research and data analysis on the criminal justice system.

Now, Jordan worries about his longevity. He struggles with pain in his legs and feet caused by a potentially life-threatening vascular blockage, and research suggests prison accelerates the aging process.

2 million Americans in jail or prison

Life expectancy fell in the United States in 2021 for the second year in a row, according to the Centers for Disease Control and Prevention. That decline is linked to the devastating effect of covid-19 and a spike in drug overdoses.

Some academic experts and activists say the trend also underscores the lasting health consequences of mass incarceration in a nation with roughly 2 million imprisoned or jailed people, one of the highest rates in the developed world.

A Senate report last year found the U.S. Department of Justice failed to identify more than 900 deaths in prisons and local jails in fiscal year 2021. The report said the DOJ’s poor data collection and reporting undermined transparency and congressional oversight of deaths in custody.

Thousands of people like Jordan are released from prisons and jails every year with conditions such as cancer, heart disease, and infectious diseases they developed while incarcerated. The issue hits hard in Alabama, Louisiana, and other Southeastern states, which have some of the highest incarceration rates in the nation.

Behind bars far longer

A major reason the U.S. trails other developed countries in life expectancy is because it has more people behind bars and keeps them there far longer, says Chris Wildeman, a Duke University sociology professor who has researched the link between criminal justice and life expectancy.

“It’s a health strain on the population,” Wildeman says. “The worse the prison conditions, the more likely it is incarceration can be tied to excess mortality.”

Mass incarceration has a ripple effect across society.

Incarcerated people may be more susceptible than the general population to infectious diseases such as covid and HIV that can spread to loved ones and other community members once they are released. The federal government has also failed to collect or release enough information about deaths in custody that could be used to identify disease patterns and prevent fatalities and illness inside and outside of institutions, researchers says.

Over a 40-year span starting in the 1980s, the number of people in the nation’s prisons and jails more than quadrupled, fueled by tough-on-crime policies and the war on drugs.

Federal lawmakers and states such as Alabama have passed reforms in recent years amid bipartisan agreement that prison costs have grown too high and that some people could be released without posing a risk to public safety.

The changes have come too late and not gone far enough to curb the worst effects on health, some researchers and activists for reform say.

Still, no one has proven that incarceration alone shortens life expectancy. But research from the early 2000s did show the death rate for people leaving prison was 3.5 times higher than for the rest of the population in the first few years after release. Experts found deaths from drug use, violence, and lapses in access to health care were especially high in the first two weeks after release.

Another study found that currently or formerly incarcerated Black people suffered a 65% higher mortality rate than their non-Black peers. Black people also make up a disproportionately high percentage of state prison populations.

“Operating in the dark”

The enactment in 2000 of the Death in Custody Reporting Act, and its reauthorization in 2014, required the DOJ to collect information about deaths in state and local jails and prisons.

The information is supposed to include details on the time and location of a death, demographic data on the deceased, the agency involved, and the manner of death.

But a recent report from the Government Accountability Office found that 70% of the records the DOJ received were missing at least one required data point. Federal officials also lacked a plan to take corrective action against states that didn’t meet reporting requirements, the GAO found.

The deficiency in data means the federal government can’t definitively say how many people have died in prisons and jails since the covid-19 pandemic began, researchers say.

“Without data, we are operating in the dark,” says Andrea Armstrong, a professor at the Loyola University New Orleans College of Law, who has testified before Congress on the issue.

Armstrong says federal and state officials need the data to identify institutions failing to provide proper health care, nutritious food, or other services that can save lives.

The DOJ did not make officials available for interviews to answer questions about the GAO report.

In a written statement, agency officials said they were working with law enforcement and state officials to overcome barriers to full and accurate reporting.

“The Justice Department recognizes the profound importance of reducing deaths in custody,” the statement said. “Complete and accurate data are essential for drawing meaningful conclusions about factors that may contribute to unnecessary or premature deaths, and promising practices and policies that can reduce the number of deaths.”

Department officials said the agency is committed to enhancing its implementation of the Death in Custody Reporting Act and that it has ramped up its efforts to improve the quality and quantity of data that it collects.

The DOJ has accused Alabama, where Jordan was incarcerated, of failing to adequately protect incarcerated people from violence, sexual abuse, and excessive force by prison staff, and of holding prisoners in unsanitary and unsafe conditions.

One of the longest sentences in Alabama history

Jordan served 38 years of a 40-year sentence for reckless murder stemming from a car accident, which his lawyer argued in his petition for early release was one of the longest sentences in Alabama history for the crime. A jury had found him guilty of being drunk while driving a vehicle that crashed with another, killing a man. If he were convicted today instead, he would be eligible to receive a sentence as short as 13 years behind bars, because he has no prior felony history, wrote Alabama Circuit Judge Stephen Wallace, who reviewed Jordan’s petition for early release.

With legal help from Redemption Earned, an Alabama nonprofit headed by a former state Supreme Court chief justice, Jordan petitioned the court for early release.

On Sept. 26, 2022, Wallace signed an order releasing Jordan from prison under a rule that allows Alabama courts to reconsider sentences.

A few months later, Jordan says, he had surgery to treat a vascular blockage that was reducing blood flow to his left leg and left foot. A picture shows a long surgical scar stretching from his thigh to near his ankle.

The Alabama Department of Corrections refused an interview request to answer questions about conditions in the state’s prisons.

Jordan says his vascular condition was excruciating. He said he did not receive adequate treatment for it in prison: “You could see my foot dying.”

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Copyright 2023 Kaiser Health News. To see more, visit Kaiser Health News.

PÜTTLINGEN, Germany — Almost every day, Dr. Eckart Rolshoven sees the long shadow of coal mining in his clinic near the big brownstone church that dominates this small town in Germany’s Saarland.

The region’s last-operating coal shaft, just a few miles away, closed a decade ago, ending centuries of mining in the Saarland, a mostly rural state tucked between the Rhine River and the French border. But the mines left a difficult legacy, as they have in coal regions in the United States, including West Virginia.

Many of Rolshoven’s patients battle lung diseases and chronic pain from years of work underground. “We had an industry with a lot of illnesses,” said Rolshoven, a genial primary care physician who at 71 is nearing the end of a long career.

The Saarland’s residents are sicker than elsewhere in Germany. And like West Virginia, the region faces economic hurdles. For decades, German politicians, business leaders and unions have labored to adjust to the mining industry’s slow demise.

But this is a healthier place than West Virginia in many respects. The region’s residents are less likely to die prematurely, data shows. And on average, they live four years longer than West Virginians.

There is another important difference between this former coal territory and its Appalachian counterpart: West Virginia’s economic struggles have been compounded by medical debt, a burden that affects about 100 million people in the U.S. — in no state more than West Virginia.

In the Saarland, medical debt is practically nonexistent. It’s so rare in Germany that the federal government’s statistical office doesn’t even track it.

The reason isn’t government health care. Germany, like the U.S., has a largely private health care system that relies on private doctors and private insurers. Like Americans, many Germans enroll in a health plan through work, splitting the cost with their employer.

But Germany has long done something the U.S. does not: It strictly limits how much patients have to pay out of their own pockets for a trip to the doctor, the hospital or the pharmacy.

Rolshoven’s patients pay nothing when they see him. That not only bolsters their health, he said. It helps maintain what Rolshoven called social peace. “It’s really important not to have to worry about these problems,” he said.

German health officials, business leaders and economists say the access to affordable health care has also helped the Saarland get back on its feet economically, bolstered by the assurance that workers could get to the doctor.

“Without this, the Saarland would be dead,” said Beatrice Zeiger, managing director of the Arbeitskammer des Saarlandes, a regional labor group. “It’s unthinkable.”

While health costs rise in the U.S., Germany contains them

In West Virginia, whose wooded valleys and decaying industrial plants could be mistaken for the Saarland’s, access to health coverage has been important as the state weathered the decline of its mines.

A decade ago, state leaders moved to expand the Medicaid insurance program through the Affordable Care Act. And as of last year, just 6% of state residents were uninsured, less than half the rate before the 2010 law.

But growing numbers of West Virginians without government insurance are in private health plans with deductibles that require they pay thousands of dollars out of their own pockets before coverage kicks in.

The typical individual health plan an American gets through work now comes with a more than $1,500 deductible, a particularly big sum in a state like West Virginia where residents often earn less than residents of other states.

That, in turn, is driving medical debt. A quarter of West Virginians with a credit report have medical bills in collections, almost twice the national rate, according to data compiled by the nonprofit Urban Institute. In several counties in the state, the rate is about a third.

And those figures likely understate the problem. Many more people put medical bills on their credit cards, borrow from family or enroll in installment plans with a hospital or other providers to pay off their bills.

“It’s a huge problem here,” said Jessica Ice, executive director of West Virginians for Affordable Health Care. “Folks with medical debt aren’t able to apply for loans to start a business or buy a starter home for their family. It’s really preventing people from climbing up the economic ladder.”

In German health plans, known as sickness funds, there aren’t typically deductibles.

Physician visits are almost always free for patients. Copays for most prescription drugs are capped at 10 euros or less, about $10. And people admitted to the hospital pay only 10 euros a day.

“Access to medical care with minimal costs for patients has been essential,” said Armin Beck, regional director of the Knappschaft Bahn See, of KBS, a health insurance plan whose roots stretch back to the 13th century, when miners set up a mutual aid society to protect one another in case of injuries or accidents. “This has been a foundation of our community,” Beck said.

‘So glad we don’t have to worry’

Along the Saar River in Germany, rusting steelworks and shuttered coal-fired power plants bear testament to the region’s economic struggles. Many towns like Püttlingen carry on in the shadow of hulking mounds of debris — Berghalde, as they are called — the detritus left behind as coal was separated from the rocky earth hauled up from underground.

Today, new challenges confront the region. Ford, which has operated a car factory here for decades, plans to shutter the plant in a few years and move production to Spain.

But at Rolshoven’s clinic — a small set of offices tucked into a residential neighborhood — few patients can conceive of the burdens that medical bills put on Americans.

Andrea Fecht, 63, who has diabetes and came to see Rolshoven because recent tests revealed a concerning rise in her blood sugar, estimated she pays 120 euros a year, or about $125, to fill all six of her prescriptions, including her daily insulin.

In the U.S., the average price for insulin alone is nine times that in Germany, according to a recent report from Rand Corp., a research group.

Andreas Mang, a former miner who left the industry 20 years ago after a series of accidents, would likely pay even more out-of-pocket for his family’s drugs. Mang’s wife recently underwent a course of chemotherapy that would cost thousands of dollars if not for Germany’s limits on medical bills, Rolshoven said.

“I can’t imagine what it would be like not to have this support,” Mang said.

Christine Wagner said she’s had a glimpse of what Americans face. Wagner’s 18-year-old son, Jonas, has Down syndrome and has required more than 20 surgeries.

In global Facebook groups with other parents who have children with disabilities, Wagner said she’s amazed to see how much fundraising American parents do to pay family medical bills. “I’m so glad we don’t have to worry about that,” she said. “We have enough to do looking after Jonas.”

Countries where health care is actually affordable

International surveys underscore the difference Wagner observed between her experiences and those of American families.

In one recent study of health care in 11 high-income countries, the nonprofit Commonwealth Fund found that 44% of Americans had out-of-pocket medical expenses that topped $1,000 in the previous year. Just 16% of Germans reported paying that much. The rates were even lower in France, at 10%, and Great Britain, where only 7% reported similar medical expenses.

U.S. patients were also more than twice as likely as patients in any of the 10 other countries studied to say they had serious problems paying medical bills.

“Many Americans may not understand how affordable health care is for patients in other countries,” said Reginald D. Williams II, who oversees international research at the Commonwealth Fund. “Medical debt is a largely U.S. phenomenon. It just doesn’t happen in other countries.”

Most wealthy countries in Western Europe, East Asia and elsewhere limit patients’ out-of-pocket costs.

In the Netherlands, where patients enroll in private health plans as they do in Germany, insurers typically cover all medical expenses after patients pay a standard deductible of 385 euros, or about $400. Physician visits are fully covered.

In Great Britain, where medical care that is “free at the point of service” has been a foundation of that country’s government-run National Health Service for almost 75 years, there are rarely any doctor or hospital bills.

When the government asked Britons who’d gone into debt about the causes, just 2% cited paying for medical treatment. A similar share attributed their debt to gambling or another habit.

In the U.S., 41% of adults currently have debt from medical or dental bills, according to a KFF poll.

How Germany regulates hospital, doctor and drug prices

Germany’s strict limits on medical bills have periodically stoked concerns about patients overusing the health system.

But when health plans tried implementing a copay of 10 euros for physician visits, it was quickly rolled back amid criticism from patients and frustration among doctors, who didn’t like chasing after their patients for bills.

At the hospital in Püttlingen, which is operated by the Knappschaft, Dr. Marion Bolte said asking patients to pay more isn’t worth the risk, even if it might bring in more money.

“It’s better to have 20 unnecessary visits than to have one patient get harmed because they didn’t come to the hospital because they were worried about how much it would cost,” said Bolte, the chief medical officer. “We don’t want patients to worry about money. We want them to worry about getting better.”

Nationally, German patients are less likely than Americans to die from conditions that can be treated with good access to medical care, such as heart attacks, diabetes, pneumonia and some cancers, according to regional data compiled by the Paris-based Organization for Economic Cooperation and Development.

Germans are also less likely than Americans to say they had to wait to see a doctor, surveys show.

Lower-cost health care that protects workers from going into debt has meant fewer concerns for the Saarland’s policymakers, as well. “All that our predecessors had to worry about was creating jobs,” said Oliver Groll, a senior official at IHK Saarland, the regional chamber of commerce. “Health care took care of itself.”

As mining jobs disappeared, the Saarland shifted toward other industries, such as auto manufacturing, which has been a major employer since Ford opened its factory in 1970, sparking the development of a robust auto parts sector. The chamber and other business leaders are now working to lure technology and pharmaceutical jobs to the region.

For Mang, the former miner whose wife had cancer, knowing that medical bills wouldn’t drive him into debt helped give him the peace of mind to switch careers. “I never had to think about how much health care would cost me,” said Mang, who is now a nurse.

Maintaining this system has required that Germany do something else that U.S. policymakers have historically eschewed. Germany, like most wealthy nations, regulates the prices that hospitals, doctors and drugmakers can charge. This regulation occurs through a highly structured system in which insurers negotiate collectively with physician and hospital groups to set prices.

American hospitals and other medical providers for decades have fiercely resisted limits on their prices, spending millions to fight government regulation.

Price regulation can put more financial pressure on providers, who, unlike their American counterparts, can’t just demand higher prices from insurers to bolster their bottom lines.

Mario Schüller, the hospital administrator who runs the Knappschaft hospital in Püttlingen, said hospitals must instead compete to attract patients with better care and better customer service. Those that can’t compete may close, he said.

But Schüller said he wouldn’t want to charge patients more, even if he could.

“If I had to bill patients and then try to collect from them, I’d have to pay for all that,” he said. “We’d need new staff, who would have to get paid. And if we used collections companies, they’d have to be paid, too. It becomes a devil’s bargain.”

Copyright 2022 Kaiser Health News. To see more, visit Kaiser Health News.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.