OSKALOOSA, Iowa — Rural regions like the one surrounding this southern Iowa town used to have a lot more babies, and many more places to give birth to them.

At least 41 Iowa hospitals have shuttered their labor and delivery units since 2000. Those facilities, representing about a third of all Iowa hospitals, are located mostly in rural areas where birth numbers have plummeted. In some Iowa counties, annual numbers of births have fallen by three-quarters since the height of the baby boom in the 1950s and ’60s, when many rural hospitals were built or expanded, state and federal records show.

Similar trends are playing out nationwide, as hospitals struggle to maintain staff and facilities to safely handle dwindling numbers of births. More than half of rural U.S. hospitals now lack the service.

“People just aren’t having as many kids,” said Addie Comegys, who lives in southern Iowa and has regularly traveled 45 minutes each way for prenatal checkups at Oskaloosa’s hospital this summer. Her mother had six children, starting in the 1980s, when big families didn’t seem so rare.

“Now, if you have three kids, people are like, ‘Oh my gosh, are you ever going to stop?’” said Comegys, 29, who is expecting her second child in late August.

These days, many Americans choose to have small families or no children at all. Modern birth control methods help make such decisions stick. The trend is amplified in small towns when young adults move away, taking any childbearing potential with them.

Hospital leaders who close obstetrics units often cite declining birth numbers, along with staffing challenges and financial losses. The closures can be a particular challenge for pregnant women who lack the reliable transportation and flexible schedules needed to travel long distances for prenatal care and birthing services.

The baby boom peaked in 1957, when about 4.3 million children were born in the United States. The annual number of births dropped below 3.7 million by 2022, even though the overall U.S. population nearly doubled over that same period.

West Virginia has seen the steepest decline in births, a 62% drop in those 65 years, according to federal data. Iowa’s births dropped 43% over that period. Of the state’s 99 counties, just four — all urban or suburban — recorded more births.

Births have increased in only 13 states since 1957. Most of them, such as Arizona, California, Florida, and Nevada, are places that have attracted waves of newcomers from other states and countries. But even those states have had obstetrics units close in rural areas.

In Iowa, Oskaloosa’s hospital has bucked the trend and kept its labor and delivery unit open, partly by pulling in patients from 14 other counties. Last year, the hospital even managed the rare feat of recruiting two obstetrician-gynecologists to expand its services.

The publicly owned hospital, called Mahaska Health, expects to deliver 250 babies this year, up from about 160 in previous years, CEO Kevin DeRonde said.

“It’s an essential service, and we needed to keep it going and grow it,” DeRonde said.

Many of the U.S. hospitals that are now dropping obstetrics units were built or expanded in the mid-1900s, when America went on a rural-hospital building spree, thanks to federal funding from the Hill-Burton Act.

“It was an amazing program,” said Brock Slabach, chief operations officer for the National Rural Health Association. “Basically, if you were a county that wanted a hospital, they gave you the money.”

Slabach said that in addition to declining birth numbers, obstetrics units are experiencing a drop in occupancy because most patients go home after a night or two. In the past, patients typically spent several days in the hospital after giving birth.

Dwindling caseloads can raise safety concerns for obstetrics units.

A study published in JAMA in 2023 found that women were more likely to suffer serious complications if they gave birth in rural hospitals that handled 110 or fewer births a year. The authors said they didn’t support closing low-volume units, because that could lead more women to have complications related to traveling for care. Instead, they recommended improving training and coordination among rural health providers.

Stephanie Radke, a University of Iowa obstetrics and gynecology professor who studies access to birthing services, said it is almost inevitable that when rural birth numbers plunge, some obstetrics units will close. “We talk about that as a bad event, but we don’t really talk about why it happens,” she said.

Radke said maintaining a set number of obstetrics units is less important than ensuring good care for pregnant women and their babies. It’s difficult to maintain quality of care when the staff doesn’t consistently practice deliveries, she said, but it is hard to define that line. “What is realistic?” she said. “I don’t think a unit should be open that only delivers 50 babies a year.”

In some cases, she said, hospitals near each other have consolidated obstetrics units, pooling their resources into one program that has enough staffers and handles sufficient cases. “You’re not always really creating a care desert when that happens,” she said.

The decline in births has accelerated in many areas in recent years. Kenneth Johnson, a sociology professor and demographer at the University of New Hampshire, said it is understandable that many rural hospitals have closed obstetrics units. “I’m actually surprised some of them have lasted as long as they have,” he said.

Johnson said rural areas that have seen the steepest population declines tend to be far from cities and lack recreational attractions, such as mountains or large bodies of water. Some have avoided population losses by attracting immigrant workers, who tend to have larger families in the first generation or two after they move to the U.S., he said.

Katy Kozhimannil, a University of Minnesota health policy professor who studies rural issues, said declining birth numbers and obstetric unit closures can create a vicious cycle. Fewer babies being born in a region can lead a birthing unit to shutter. Then the loss of such a unit can discourage young people from moving to the area, driving birth numbers even lower.

In many regions, people with private insurance, flexible schedules, and reliable transportation choose to travel to larger hospitals for their prenatal care and to give birth, Kozhimannil said. That leaves rural hospitals with a larger proportion of patients on Medicaid, a public program that pays about half what private insurance pays for the same services, she said.

Iowa ranks near the bottom of all states for obstetrician-gynecologists per capita. But Oskaloosa’s hospital hit the jackpot last year, when it recruited Taylar Swartz and Garth Summers, a married couple who both recently finished their obstetrics training. Swartz grew up in the area, and she wanted to return to serve women there.

She hopes the number of obstetrics units will level off after the wave of closures. “It’s not even just for delivery, but we need access just to women’s health care in general,” she said. “I would love to see women’s health care be at the forefront of our government’s mind.”

Swartz noted that the state has only one obstetrics training program, which is at the University of Iowa. She said she and her husband plan to help spark interest in rural obstetrics by hosting University of Iowa residency rotations at the Oskaloosa hospital.

Comegys, a patient of Swartz’s, could have chosen a hospital birthing center closer to her home, but she wasn’t confident in its quality. Other hospitals in her region had shuttered their obstetrics units. She is grateful to have a flexible job, a reliable car, and a supportive family, so she can travel to Oskaloosa for checkups and to give birth there. She knows many other women are not so lucky, and she worries other obstetrics units are at risk.

“It’s sad, but I could see more closing,” she said.

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

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

David Engler had been pretty sure he didn’t want children. Then a frustrating school day two years ago helped seal the deal for the now 43-year-old substitute teacher.

“It was wild. I had to call the office seven times to get kids pulled out,” he said. “The next day, I called Kaiser and said, ‘I’d like to know how much a vasectomy is.’”

A representative with Engler’s insurer, Kaiser Permanente, told him the procedure would be free because it was a form of birth control, he said. But after undergoing the vasectomy last winter, he received a bill for $1,080.

“I felt defeated, tricked, and frustrated,” said Engler, who lives in Portland, Oregon.

Engler’s experience highlights how a labyrinthine patchwork of insurance coverage rules on reproductive health care creates confusion for patients. Oregon requires that vasectomies be covered for most people who work in the public sector. But the federal Affordable Care Act — which mandates that most health plans cover preventive health services, such as contraception, at no cost to the consumer — does not require vasectomies to be covered.

And that perplexity surrounding coverage may get more complicated.

An ongoing federal lawsuit aims to strike down the ACA’s preventive care coverage requirements for private insurers. If the case knocks out the mandates, state-level laws — which vary widely across the country — would carry more weight, a change that would resume the “wild West” dynamic from before Obamacare, said Zachary Baron, a health policy researcher at Georgetown Law.

It would create an environment “in which insurers and employers pick and choose which services they want to cover or which services they want to charge for,” Baron said. “It would certainly threaten access to care for millions of Americans.”

Studies have shown the requirements to cover preventive care have reduced consumers’ out-of-pocket costs and increased their use of short- and long-term birth control methods.

The job of defining which contraceptive services should be covered falls to the Health Resources and Services Administration, or HRSA. Two other groups — the U.S. Preventive Services Task Force, or USPSTF, and the Advisory Committee on Immunization Practices, or ACIP — make recommendations on other kinds of care that the ACA requires insurers to cover.

The plaintiffs in the lawsuit, a group of individuals and Christian-owned businesses, argue the members of these three panels haven’t been properly appointed by Congress. They also say the recommendations for insurance plans to cover medication for HIV prevention violate their religious rights.

On June 21, the U.S. Court of Appeals for the 5th Circuit issued what it called a “mixed bag” opinion in the case. It said one group — the USPSTF — had not been properly appointed, and therefore its recommendations made after the ACA was signed into law were unconstitutional. The plaintiffs had asked for a nationwide ruling, but the court said only the plaintiffs’ organizations could be exempted from its recommendations.

The court then sent the plaintiffs’ challenges to the recommendations made by HRSA and ACIP — including those on contraception — back to a lower court to consider.

The case is likely headed to Reed O’Connor, a federal judge in Texas who has issued decisions undermining the ACA — including a ruling striking down the entire law that the U.S. Supreme Court later overturned.

“O’Connor is a judge notoriously hostile to the Affordable Care Act,” said Gretchen Borchelt, vice president of reproductive rights and health at the National Women’s Law Center. “He is someone who is willing to impose remedies where he takes access to care away from everybody in the country based on what’s happening in one situation.”

A win for the plaintiffs, she worried, could create confusion about what kind of contraception is covered and how much it costs, which would ultimately lead to more unintended pregnancies — all at a time when women have less access to abortions.

Nearly two dozen organizations — including the American Medical Association, the American Public Health Association, and the Blue Cross Blue Shield Association — have joined Borchelt’s group in filing briefs warning about the potential disruptions a ruling for the plaintiffs could cause.

Jay Carson, an attorney with the Buckeye Institute, a conservative think tank, said he’s happy with the court’s ruling. His group, along with the state of Texas, filed briefs in support of the plaintiffs.

“Unelected bureaucrats” shouldn’t have the power to decide what insurance plans should be required to cover, said Carson. “We’ve gotten so far afield of Congress actually making the laws and, instead, relying on Congress to just empower some agency to do the heavy lifting.”

What power agencies do have is likely to be curtailed in the wake of a June 28 U.S. Supreme Court decision that overturned a decades-old precedent dictating that courts should defer to federal agencies when it comes to regulatory or scientific decisions.

“Courts are going to be more able to scrutinize experts,” said Richard Hughes, a health care regulatory attorney with the firm Epstein, Becker, and Green. “It’s a vibe shift — we’re moving in the direction of the administrative state being curtailed.”

Eliminating federal coverage requirements for contraception would leave it up to states to determine what services health insurance plans would be required to provide.

“It would leave significant gaps in coverage,” Baron said.

A group of Democratic-led states made such an argument in a court brief last year, arguing for the mandates to be upheld to discourage self-funded plans from declining to offer preventive services, as they often did before the ACA.

Even when states can regulate what health plans cover, people still fall through the cracks. “I see denials all the time in instances where the treatment clearly is covered,” said Megan Glor, a health insurance attorney in Oregon.

Patients can appeal their insurers’ decisions, but that’s not easy. And if a patient’s appeals fail, litigation is generally the only option — but that’s a long, complicated, costly process, Glor said. Likely, the best outcome for a patient is an insurer covering what should have been covered in the first place.

When Engler called Kaiser Permanente about his vasectomy charge, he said a representative told him the bill was sent by mistake. Still, he said, the insurer kept asking for money. Engler filed and lost multiple appeals and eventually settled the charge for $540.

Engler’s vasectomy likely should have been free, Glor said. As a teacher, Engler is a public sector employee, which means his insurance would be subject to an Oregon law that mandates no-cost coverage for vasectomies.

Kaiser Permanente told KFF Health News that state law does not apply because of a federal rule for high-deductible health plans paired with health savings accounts. That rule requires patients to cover out-of-pocket costs until their deductible is met.

However, after KFF Health News contacted Kaiser Permanente about Engler’s situation, he said the company promised to issue a full refund for the $540 he had paid to settle his case.

“Although we administered the benefit correctly, an employee who spoke with Mr. Engler told him incorrectly that he would not have” to share the cost, said Debbie Karman, a Kaiser Permanente spokesperson.

Engler said he’s happy with the outcome, though he’s still unsure how Kaiser Permanente’s staff was confused about his insurance coverage.

He worries that others don’t have the means he had to advocate for himself.

“It’s scary,” he said. “So many people are limited in their resources or their understanding of how to fight — or even who to fight.”

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

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

In 2013, the FDA approved an implantable device to treat leaky heart valves. Among its inventors was Mehmet Oz, the former television personality and former U.S. Senate candidate widely known as “Dr. Oz.”

In online videos, Oz has called the process that brought the MitraClip device to market an example of American medicine firing “on all cylinders,” and he has compared it to “landing a man on the moon.”

MitraClip was designed to spare patients from open-heart surgery by snaking hardware into the heart through a major vein. Its manufacturer, Abbott, said it offered new hope for people severely ill with a condition called mitral regurgitation and too frail to undergo surgery.

“It changed the face of cardiac medicine,” Oz said in a video.

But since MitraClip won FDA approval, versions of the device have been the subject of thousands of reports to the agency about malfunctions or patient injuries, as well as more than 1,100 reports of patient deaths, FDA records show. Products in the MitraClip line have been the subject of three recalls. A former employee has alleged in a federal lawsuit that Abbott promoted the device through illegal inducements to doctors and hospitals. The case is pending, and Abbott has denied illegally marketing the device.

The MitraClip story is, in many ways, a cautionary tale about the science, business, and regulation of medical devices.

Manufacturer-sponsored research on the device has long been questioned. In 2013, an outside adviser to the FDA compared some of the data marshaled in support of its approval to “poop.”

The FDA expanded its approval of MitraClip to a wider set of patients in 2019, based on a clinical trial in which Abbott was deeply involved and despite conflicting findings from another study.

In the three recalls, the first of which warned of potentially deadly consequences, neither the manufacturer nor the FDA withdrew inventory from the market. The company told doctors it was OK for them to continue using the recalled products.

In response to questions for this article, both Abbott and the FDA described MitraClip as safe and effective.

“With MitraClip, we’re addressing the needs of people with MR who often have no other options,” Abbott spokesperson Brent Tippen said. “Patients suffering from mitral regurgitation have severely limited quality of life. MitraClip can significantly improve survival, freedom for hospitalization and quality of life via a minimally invasive, now common procedure.”

An FDA spokesperson, Audra Harrison, said patient safety “is the FDA’s highest priority and at the forefront of our work in medical device regulation.”

She said reports to the FDA about malfunctions, injuries, and deaths that the device may have caused or contributed to are “consistent” with study results the FDA reviewed for its 2013 and 2019 approvals.

In other words: They were expected.

Inspiration in Italy

When a person has mitral regurgitation, blood flows backward through the mitral valve. Severe cases can lead to heart failure.

With MitraClip, flaps of the valve — known as “leaflets” — are clipped together at one or more points to achieve a tighter seal when they close. The clips are deployed via a catheter threaded through a major vein, typically from an incision in the groin. The procedure offers an alternative to connecting the patient to a heart-lung machine and repairing or replacing the mitral valve in open-heart surgery.

Oz has said in online videos that he got the idea after hearing a doctor describe a surgical technique for the mitral valve at a conference in Italy. “And on the way home that night, on a plane heading back to Columbia University, where I was on the faculty, I wrote the patent,” he told KFF Health News.

A patent obtained by Columbia in 2001, one of several associated with MitraClip, lists Oz first among the inventors.

But a Silicon Valley-based startup, Evalve, would develop the device. Evalve was later acquired by Abbott for about $400 million.

“I think the engineers and people at Evalve always cringe a little bit when they see Mehmet taking a lot of, you know, basically claiming responsibility for what was a really extraordinary team effort, and he was a small to almost no player in that team,” one of the company’s founders, cardiologist Fred St. Goar, told KFF Health News.

Oz did not respond to a request for comment on that statement.

As of 2019, the MitraClip device cost $30,000 per procedure, according to an article in a medical journal. According to the Abbott website, more than 200,000 people around the world have been treated with MitraClip.

Oz filed a financial disclosure during his unsuccessful run for the U.S. Senate in 2022 that showed him receiving hundreds of thousands of dollars in annual MitraClip royalties.

Abbott recently received FDA approval for TriClip, a variation of the MitraClip system for the heart’s tricuspid valve.

Endorsed ‘With Trepidation’

Before the FDA said yes to MitraClip in 2013, agency staffers pushed back.

Abbott had originally wanted the device approved for “patients with significant mitral regurgitation,” a relatively broad term. After the FDA objected, the company narrowed its proposal to patients at too-high risk for open-heart surgery.

Even then, in an analysis, the FDA identified “fundamental” flaws in Abbott’s data.

FDA “approval is not appropriate at this time as major questions of safety and effectiveness, as well as the overall benefit-risk profile for this device, remain unanswered,” the FDA said in a review prepared for a March 2013 meeting of a committee of outside advisers to the agency.

Some committee members expressed misgivings. “If your right shoe goes into horse poop and your left shoe goes into dog poop, it’s still poop,” cardiothoracic surgeon Craig Selzman said, according to a transcript.

The committee voted 5-4 against MitraClip on the question of whether it proved effective. But members voted 8-0 that they considered the device safe and 5-3 that the benefits of the device outweighed its risks.

Selzman voted yes on the last question “with trepidation,” he said at the time.

In October 2013, the FDA approved the MitraClip Clip Delivery System for a narrower group of patients: those with a particular type of mitral regurgitation who were considered a surgery risk.

“The reality is, there is no perfect procedure,” said Jason Rogers, an interventional cardiologist and University of California-Davis professor who is an Abbott consultant. The company referred KFF Health News to Rogers as an authority on MitraClip. He called MitraClip “extremely safe” and said some patients treated with it are “on death’s door to begin with.”

“At least you’re trying to do something for them,” he said.

Conflicting Studies

In 2019, the FDA expanded its approval of MitraClip to a wider set of patients.

The agency based that decision on a clinical trial in the United States and Canada that Abbott not only sponsored but also helped design and manage. It participated in site selection and data analysis, according to a September 2018 New England Journal of Medicine paper reporting the trial results. Some of the authors received consulting fees from Abbott, the paper disclosed.

A separate study in France reached a different conclusion. It found that, for some patients who fit the expanded profile, the device did not significantly reduce deaths or hospitalizations for heart failure over a year.

The French study, which appeared in the New England Journal of Medicine in August 2018, was funded by the government of France and Abbott. As with the North American study, some of the researchers disclosed they had received money from Abbott. However, the write-up in the journal said Abbott played no role in the design of the French trial, the selection of sites, or in data analysis.

Gregg Stone, one of the leaders of the North American study, said there were differences between patients enrolled in the two studies and how they were medicated. In addition, outcomes were better in the North American study in part because doctors in the U.S. and Canada had more MitraClip experience than their counterparts in France, Stone said.

Stone, a clinical trial specialist with a background in interventional cardiology, acknowledged skepticism toward studies sponsored by manufacturers.

“There are some people who say, ‘Oh, well, you know, these results may have been manipulated,’” he said. “But I can guarantee you that’s not the truth.”

‘Nationwide Scheme’

A former Abbott employee alleges in a lawsuit that after MitraClip won approval, the company promoted the device to doctors and hospitals using inducements such as free marketing support, the chance to participate in Abbott clinical trials, and payments for participating in “sham speaker programs.”

The former employee alleges that she was instructed to tell referring physicians that if they observed mitral regurgitation in their patients to “just send it” for a MitraClip procedure because “everything can be clipped.” She also alleges that, using a script, she was told to promote the device to hospital administrators based on financial advantages such as “growth opportunities through profitable procedures, ancillary tests, and referral streams.”

The inducements were part of a “nationwide scheme” of illegal kickbacks that defrauded government health insurance programs including Medicare and Medicaid, the lawsuit claims.

The company denied doing anything illegal and said in a court filing that “to help its groundbreaking therapy reach patients, Abbott needed to educate cardiologists and other healthcare providers.”

Those efforts are “not only routine, they are laudable — as physicians cannot use, or refer a patient to another doctor who can use, a device that they do not understand or in some cases even know about,” the company said in the filing.

Under federal law, the person who filed the suit can receive a share of any money the government recoups from Abbott. The suit was filed by a company associated with a former employee in Abbott’s Structural Heart Division, Lisa Knott. An attorney for the company declined to comment and said Knott had no comment.

Reports to the FDA

As doctors started using MitraClip, the FDA began receiving reports about malfunctions and cases in which the product might have caused or contributed to a death or an injury.

According to some reports, clips detached from valve flaps. Flaps became damaged. Procedures were aborted. Mitral leakage worsened. Doctors struggled to control the device. Clips became “entangled in chordae” — cord-like structures also known as heartstrings that connect the valve flaps to the heart muscle. Patients treated with MitraClip underwent corrective operations.

As of March 2024, the FDA had received more than 17,000 reports documenting more than 22,000 “events” involving mitral valve repair devices, FDA data shows. All but about 200 of those reports mention one iteration of MitraClip or another, a KFF Health News review of FDA data found.

Almost all the reports came from Abbott. The FDA requires manufacturers to submit reports when they learn of mishaps potentially related to their devices.

The reports are not proof that devices caused problems, and the same event might be reported multiple times. Other events may go unreported.

Despite the reports’ limitations, the FDA provides an analysis of them for the public on its website.

MitraClip’s risks weren’t a surprise.

Like the rapid-fire fine print in television ads for prescription drugs, the original product label for the device listed more than 60 types of potential complications.

Indeed, during clinical research on the device, about 6% of patients implanted with MitraClip died within 30 days, according to the label. Almost 1 in 4 — 23.6% – were dead within a year.

The FDA spokesperson, Harrison, pointed to a study originally published in 2021 in The Annals of Thoracic Surgery, based on a central registry of mitral valve procedures, that found lower rates of death after MitraClip went on the market.

“These data confirmed that the MitraClip device remains safe and effective in the real-world setting,” Harrison said.

But the study’s authors, several of whom disclosed financial or other connections to Abbott, said data was missing for more than a quarter of patients one year after the procedure.

A major measure of success would be the proportion of MitraClip patients who are alive “with an acceptable quality of life” a year after undergoing the procedure, the study said. Because such information was available for fewer than half of the living patients, “we have omitted those outcomes from this report,” the authors wrote.

KFF Health News audience engagement producer Tarena Lofton contributed to this report.

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

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

Over the past two years, a simple but baffling request has preceded most of my encounters with medical professionals: “Rate your pain on a scale of zero to 10.”

I trained as a physician and have asked patients the very same question thousands of times, so I think hard about how to quantify the sum of the sore hips, the prickly thighs, and the numbing, itchy pain near my left shoulder blade. I pause and then, mostly arbitrarily, choose a number. “Three or four?” I venture, knowing the real answer is long, complicated, and not measurable in this one-dimensional way.

Pain is a squirrely thing. It’s sometimes burning, sometimes drilling, sometimes a deep-in-the-muscles clenching ache. Mine can depend on my mood or how much attention I afford it and can recede nearly entirely if I’m engrossed in a film or a task. Pain can also be disabling enough to cancel vacations, or so overwhelming that it leads people to opioid addiction. Even 10+ pain can be bearable when it’s endured for good reason, like giving birth to a child. But what’s the purpose of the pains I have now, the lingering effects of a head injury?

The concept of reducing these shades of pain to a single number dates to the 1970s. But the zero-to-10 scale is ubiquitous today because of what was called a “pain revolution” in the ’90s, when intense new attention to addressing pain — primarily with opioids — was framed as progress. Doctors today have a fuller understanding of treating pain, as well as the terrible consequences of prescribing opioids so readily. What they are learning only now is how to better measure pain and treat its many forms.

About 30 years ago, physicians who championed the use of opioids gave robust new life to what had been a niche specialty: pain management. They started pushing the idea that pain should be measured at every appointment as a “fifth vital sign.” The American Pain Society went as far as copyrighting the phrase. But unlike the other vital signs — blood pressure, temperature, heart rate, and breathing rate — pain had no objective scale. How to measure the unmeasurable? The society encouraged doctors and nurses to use the zero-to-10 rating system. Around that time, the FDA approved OxyContin, a slow-release opioid painkiller made by Purdue Pharma. The drugmaker itself encouraged doctors to routinely record and treat pain, and aggressively marketed opioids as an obvious solution.

To be fair, in an era when pain was too often ignored or undertreated, the zero-to-10 rating system could be regarded as an advance. Morphine pumps were not available for those cancer patients I saw in the ’80s, even those in agonizing pain from cancer in their bones; doctors regarded pain as an inevitable part of disease. In the emergency room where I practiced in the early ’90s, prescribing even a few opioid pills was a hassle: It required asking the head nurse to unlock a special prescription pad and making a copy for the state agency that tracked prescribing patterns. Regulators (rightly) worried that handing out narcotics would lead to addiction. As a result, some patients in need of relief likely went without.

But this approach to pain management had clear drawbacks. Studies accumulated showing that measuring patients’ pain didn’t result in better pain control. Doctors showed little interest in or didn’t know how to respond to the recorded answer. And patients’ satisfaction with their doctors’ discussion of pain didn’t necessarily mean they got adequate treatment. At the same time, the drugs were fueling the growing opioid epidemic. Research showed that an estimated 3% to 19% of people who received a prescription for pain medication from a doctor developed an addiction.

Doctors who wanted to treat pain had few other options, though. “We had a good sense that these drugs weren’t the only way to manage pain,” Linda Porter, director of the National Institutes of Health’s Office of Pain Policy and Planning, told me. “But we didn’t have a good understanding of the complexity or alternatives.” The enthusiasm for narcotics left many varietals of pain underexplored and undertreated for years. Only in 2018, a year when nearly 50,000 Americans died of an overdose, did Congress start funding a program — the Early Phase Pain Investigation Clinical Network, or EPPIC-Net — designed to explore types of pain and find better solutions. The network connects specialists at 12 academic specialized clinical centers and is meant to jump-start new research in the field and find bespoke solutions for different kinds of pain.

A zero-to-10 scale may make sense in certain situations, such as when a nurse uses it to adjust a medication dose for a patient hospitalized after surgery or an accident. And researchers and pain specialists have tried to create better rating tools — dozens, in fact, none of which was adequate to capture pain’s complexity, a European panel of experts concluded. The Veterans Health Administration, for instance, created one that had supplemental questions and visual prompts: A rating of 5 correlated with a frown and a pain level that “interrupts some activities.” The survey took much longer to administer and produced results that were no better than the zero-to-10 system. By the 2010s, many medical organizations, including the American Medical Association and the American Academy of Family Physicians, were rejecting not just the zero-to-10 scale but the entire notion that pain could be meaningfully self-reported numerically by a patient.

In the years that opioids had dominated pain remedies, a few drugs — such as gabapentin and pregabalin for neuropathy, and lidocaine patches and creams for musculoskeletal aches — had become available. “There was a growing awareness of the incredible complexity of pain — that you would have to find the right drugs for the right patients,” Rebecca Hommer, EPPIC-Net’s interim director, told me. Researchers are now looking for biomarkers associated with different kinds of pain so that drug studies can use more objective measures to assess the medications’ effect. A better understanding of the neural pathways and neurotransmitters that create different types of pain could also help researchers design drugs to interrupt and tame them.

Any treatments that come out of this research are unlikely to be blockbusters like opioids; by design, they will be useful to fewer people. That also makes them less appealing prospects to drug companies. So EPPIC-Net is helping small drug companies, academics, and even individual doctors design and conduct early-stage trials to test the safety and efficacy of promising pain-taming molecules. That information will be handed over to drug manufacturers for late-stage trials, all with the aim of getting new drugs approved by the FDA more quickly.

The first EPPIC-Net trials are just getting underway. Finding better treatments will be no easy task, because the nervous system is a largely unexplored universe of molecules, cells, and electronic connections that interact in countless ways. The 2021 Nobel Prize in Physiology or Medicine went to scientists who discovered the mechanisms that allow us to feel the most basic sensations: cold and hot. In comparison, pain is a hydra. A simple number might feel definitive. But it’s not helping anyone make the pain go away.

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

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

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

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For the most part, Cori Lint was happy.

She worked days as a software engineer and nights as a part-time cellist, filling her free hours with inline skating and gardening and long talks with friends. But a few days a month, Lint’s mood would tank. Panic attacks came on suddenly. Suicidal thoughts did, too.

She had been diagnosed with anxiety and depression, but Lint, 34, who splits her time between St. Petersburg, Florida, and Tulsa, Oklahoma, struggled to understand her experience, a rift so extreme she felt like two different people.

“When I felt better, it was like I was looking back at the experience of someone else, and that was incredibly confusing,” Lint said.

Then, in 2022, clarity pierced through. Her symptoms, she realized, were cyclical. Lint recognized a pattern in something her doctors hadn’t considered: her period.

For decades, a lack of investment in women’s health has created gaps in medicine. The problem is so prevalent that, this year, President Joe Biden signed an executive order to advance women’s health research and innovation.

Women are less likely than men to get early diagnoses for conditions from heart disease to cancer, studies have found, and they are more likely to have their medical concerns dismissed or misdiagnosed. Because disorders specifically affecting women have long been understudied, much remains unknown about causes and treatments.

That’s especially true when it comes to the effects of menstruation on mental health.

When Lint turned to the internet for answers, she learned about a debilitating condition at the intersection of mental and reproductive health.

Sounds like me, she thought.

What Is PMDD?

Premenstrual dysphoric disorder, or PMDD, is a negative reaction in the brain to natural hormonal changes in the week or two before a menstrual period. Symptoms are severe and can include irritability, anxiety, depression, and sudden mood swings. Others include fatigue, joint and muscle pain, and changes to appetite and sleep patterns, with symptoms improving once bleeding begins.

Unlike the mild discomfort of premenstrual syndrome, or PMS, the effects of premenstrual dysphoric disorder are life-altering. Those afflicted, according to one estimate, can endure almost four years of disability, cumulatively, over their lives.

Though researchers estimate that the dysphoric disorder affects around 5% of people who menstruate — about the same percentage of women with diabetes — the condition remains relatively unknown, even among health care providers.

In a 2022 survey of PMDD patients published in the Journal of Women’s Health, more than a third of participants said their family doctors had little knowledge of the premenstrual disorder or how to treat it. About 40% said the same was true of their mental health therapists.

Reproductive mental health has been sidelined as a specialty, said Jaclyn Ross, a clinical psychologist who researches premenstrual disorders as associate director of the CLEAR Lab at the University of Illinois-Chicago. Only some health care providers get training or even become aware of such disorders, Ross said.

“If you’re not considering the menstrual cycle, you’re at risk of misdiagnosing and missing what’s actually going on,” Ross said.

That was the case for Tampa, Florida, resident Jenna Tingum, 25, who had panic attacks and suicidal thoughts as a premed student at the University of Florida. It wasn’t until her college girlfriend read about PMDD online and noticed Tingum’s symptoms flared in the days leading up to her period that Tingum talked with her gynecologist.

“I don’t think I would have ever put the pieces together,” Tingum said.

Suicide Risk and Treatment

Because few researchers study the condition, the cause of PMDD is something of an enigma, and treatments remain limited.

It wasn’t until 2013 that the disorder was added to the Diagnostic and Statistical Manual, the handbook used by medical professionals in the U.S. to diagnose psychiatric conditions. PMDD was officially recognized by the World Health Organization in 2019, though references in medical literature date to the 1960s.

In one study, 72% of respondents with the disorder said they’d had suicidal thoughts in their lifetime. And 34% said they had attempted suicide, compared with 3% of the general population.

Marybeth Bohn lost her daughter, Christina Bohn, to suicide in 2021. It was only in the months before her death at age 33 that Christina connected her extreme distress to her cycle — no doctors had asked, Bohn said. Now Bohn, who lives in Columbia, Missouri, works with medical and nursing schools around the country to change curricula and encourage doctors to ask people in mental health emergencies about their premenstrual symptoms and cycles.

“We need more research to understand how and why these reactions to hormones occur,” Ross said. “There’s so much work to be done.”

While doctors haven’t settled on a universal approach to address the symptoms, three main treatments have emerged, said Rachel Carpenter, medical director of reproductive psychiatry at the University of Florida–Jacksonville College of Medicine.

Selective serotonin reuptake inhibitors, the most common form of antidepressants, are a first line of attack, Carpenter said. Some patients take the medication regularly; others in just the week or two that symptoms occur.

For some patients, hormonal birth control can alleviate symptoms by controlling or preventing the release of certain hormones.

Finally, talk therapy and cycle awareness can help patients build mental resilience for difficult weeks.

Sandi MacDonald, who co-founded the International Association for Premenstrual Disorders, a leading resource for patients and clinicians, said peer support is available through the nonprofit, but funding for research and education remains elusive.

She hopes the new White House initiative on advancing women’s health research will open doors.

Let’s Talk About Periods

Both Lint and Tingum, who were diagnosed by medical professionals after learning about the disorder on their own, said a lack of conversation around periods contributed to their care being delayed.

Lint doesn’t remember talking much about periods in grade school; they were often the butt of a joke, used to dismiss women.

“For the longest time, I thought, ‘Well, this happens to everyone, right?’” Lint said of her symptoms. “Has a doctor ever asked me what my symptoms are like? No, absolutely not. But we’re talking about a quarter or more of my life.”

Brett Buchert, a former University of Florida athlete who took time away from campus because her symptoms were so severe, said that when doctors do ask questions, it can feel like boxes being checked: “The conversation ends there.”

Buchert, who graduated with a degree in psychology and now lives in Boulder, Colorado, said understanding what’s happening to her and being aware of her cycle has helped her manage her condition.

Lint and Tingum agreed.

Even as Lint struggles to find a medicine that brings relief, tracking her cycle has allowed her to plan around her symptoms, she said. She makes fewer commitments in the week before her period. She carves out more time for self-care.

She’s also found solace in reading stories of others living with the condition, she said.

“It’s helped me process the extremes,” Lint said. “There’s not something wrong with me as an individual. I’m not crazy; this is something that’s legitimately happening to me. It helps to know I’m not alone.”

This article was produced through a partnership between KFF Health News and the Tampa Bay Times.

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

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

JELLICO, Tenn. — In March 2021, this town of about 2,000 residents in the hills of east Tennessee lost its hospital, a 54-bed acute care facility. Campbell County, where Jellico is located, ranks 90th of Tennessee’s 95 counties in health outcomes and has a poverty rate almost double the national average, so losing its health care cornerstone sent ripple effects through the region.

“Oh, my word,” said Tawnya Brock, a health care quality manager and a Jellico resident. “That hospital was not only the health care lifeline to this community. Economically and socially, it was the center of the community.”

Since 2010, 149 rural hospitals in the United States have either closed or stopped providing in-patient care, according to the Cecil G. Sheps Center for Health Services Research at the University of North Carolina. Tennessee has recorded the second-most closures of any state, with 15, and the most closures per capita. Texas has the highest number of rural hospital closures, with 25.

Each time a hospital closes there are health care and economic ripples across a community. When Jellico Medical Center closed, some 300 jobs went with it. Restaurants and other small businesses in Jellico also have gone under, said Brock, who is a member of the Rural Health Association of Tennessee’s legislative committee. And the town must contend with the empty husk of a hospital.

Dozens of small communities are grappling with what to do with hospitals that have closed. Sheps Center researchers have found that while a closure negatively affects the local economy, those effects can be softened if the building is converted to another type of health care facility.

In Jellico, the town owns the building that housed the medical center, and Mayor Sandy Terry said it is in decent condition. But the last operator, Indiana-based Boa Vida Healthcare, holds the license to operate a medical facility there and has yet to announce its plans for the building, leaving Jellico in limbo. Terry said local officials are talking with health care providers that have expressed interest in reopening the hospital. That’s their preferred option. Jellico does not have a Plan B.

“We’re just in hopes that maybe someone will take it over,” Terry said. Meanwhile, the nearest emergency rooms are a half-hour drive away in LaFollette, Tennessee, and across the state line in Corbin, Kentucky.

An hour and a half away in Fentress County, the building that once housed Jamestown Regional Medical Center has been empty since June 2019, when Florida-based Rennova Health — which also previously operated Jellico Medical Center — locked it up.

County Executive Jimmy Johnson said Rennova’s exit from Jamestown was so abrupt that “the beds were all made up perfectly” and IV stands and wheelchairs sat in the halls. About 150 jobs evaporated when the center closed.

Rennova still owed Fentress County $207,000 in taxes, Johnson said, and in April the property was put up for auction. A local business owner purchased it for $220,000. But Rennova was granted a year to reacquire the building for what it owed in back taxes, plus interest, and did so within a few days.

Abandoned hospital buildings dot the map in central and east Tennessee. But in the western part of the state, two communities found uses for their empty buildings, albeit not in reopening hospitals.

Somerville, about an hour east of Memphis, lost its hospital, Methodist Fayette, in 2015. Its parent company, Methodist Le Bonheur Healthcare, donated the building to the town and threw in $250,000. The building is now a satellite campus for the University of Tennessee-Martin.

The conversion was pushed along by the town leveraging other funding. Bob Turner, Somerville’s city administrator, said both the town and the county matched Methodist’s quarter-million dollars toward the renovation. In its first year in Somerville, the university raised another $125,000. Tennessee’s governor then matched that $875,000 in his state budget.

Somerville is now in the seventh year of a 10-year agreement with the university, which rents the building from the town.

“We have a building, an asset, that’s probably worth $15 million,” Turner said. “It’s a four-year university right here in the heart of Fayette County.”

Mendi Donnelly, Somerville’s community development director, said the county is still in desperate need of a hospital, but “we’re thrilled that we were able to make lemonade out of our lemons.”

Ninety miles to the northeast, in rural Carroll County, Tennessee, another shuttered hospital found new life.

The closing of McKenzie Regional Hospital in 2018 was a blow to the local economy. But Baptist Memorial Health Care, which operates a hospital in nearby Huntingdon, bought the assets — including the building, land, equipment, and ambulance service — and subsequently donated the building to the town of McKenzie.

Cachengo, a technology company, ultimately took over the space. Because of hospitals’ electrical infrastructure, the site was a perfect fit for a business like his, said Ash Young, Cachengo’s chief executive. Young said Cachengo is now looking into repurposing abandoned hospitals across the country.

Jill Holland, McKenzie’s former mayor and a local-government and special-projects coordinator for the Southwest Tennessee Development District, believes the town can become a technology hub.

“It’s opening a lot of doors of opportunity for the youth in the community,” Holland said.

Back in Jamestown, the vacant hospital is “deteriorating,” said Johnson, the county executive. “It could have been used to save lives.” Rennova did not respond to a request for comment.

Brock, the health care quality manager, thinks things will get better in Jellico, but the community has had its hopes dashed more than once.

Brock believes a freestanding emergency room could be a viable solution. She urges her community to be responsive to “a new day” in rural health in America, one in which a hospital must focus on its community’s most urgent needs and be realistic about what that hospital can provide.

“Maybe it is just the emergency room, a sustainable emergency room, where you could hold patients for a period of time and then transfer them,” Brock said. “And then you build upon that.”

She added, “There are options out there.”

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

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

CHARLOTTE, N.C. — Four months after seeking asylum in the U.S., Fernando Hermida began coughing and feeling tired. He thought it was a cold. Then sores appeared in his groin and he would soak his bed with sweat. He took a test.

On New Year’s Day 2022, at age 31, Hermida learned he had HIV.

“I thought I was going to die,” he said, recalling how a chill washed over him as he reviewed his results. He struggled to navigate a new, convoluted health care system. Through an HIV organization he found online, he received a list of medical providers to call in Washington, D.C., where he was at the time, but they didn’t return his calls for weeks. Hermida, who speaks only Spanish, didn’t know where to turn.

By the time of Hermida’s diagnosis, the U.S. Department of Health and Human Services was about three years into a federal initiative to end the nation’s HIV epidemic by pumping hundreds of millions of dollars annually into certain states, counties, and U.S. territories with the highest infection rates. The goal was to reach the estimated 1.2 million people living with HIV, including some who don’t know they have the disease.

Overall, estimated new HIV infection rates declined 23% from 2012 to 2022. But a KFF Health News-Associated Press analysis found the rate has not fallen for Latinos as much as it has for other racial and ethnic groups.

While African Americans continue to have the highest HIV rates in the United States overall, Latinos made up the largest share of new HIV diagnoses and infections among gay and bisexual men in 2022, per the most recent data available, compared with other racial and ethnic groups. Latinos, who make up about 19% of the U.S. population, accounted for about 33% of new HIV infections, according to the Centers for Disease Control and Prevention.

The analysis found Latinos are experiencing a disproportionate number of new infections and diagnoses across the U.S., with diagnosis rates highest in the Southeast. Public health officials in Mecklenburg County, North Carolina, and Shelby County, Tennessee, where data shows diagnosis rates have gone up among Latinos, told KFF Health News and the AP that they either don’t have specific plans to address HIV in this population or that plans are still in the works. Even in well-resourced places like San Francisco, California, HIV diagnosis rates grew among Latinos in the last few years while falling among other racial and ethnic groups despite the county’s goals to reduce infections among Latinos.

“HIV disparities are not inevitable,” Robyn Neblett Fanfair, director of the CDC’s Division of HIV Prevention, said in a statement. She noted the systemic, cultural, and economic inequities — such as racism, language differences, and medical mistrust.

And though the CDC provides some funds for minority groups, Latino health policy advocates want HHS to declare a public health emergency in hopes of directing more money to Latino communities, saying current efforts aren’t enough.

“Our invisibility is no longer tolerable,” said Vincent Guilamo-Ramos, co-chair of the Presidential Advisory Council on HIV/AIDS.

Lost Without an Interpreter

Hermida suspects he contracted the virus while he was in an open relationship with a male partner before he came to the U.S. In late January 2022, months after his symptoms started, he went to a clinic in New York City that a friend had helped him find to finally get treatment for HIV.

Too sick to care for himself alone, Hermida eventually moved to Charlotte, North Carolina, to be closer to family and in hopes of receiving more consistent health care. He enrolled in an Amity Medical Group clinic that receives funding from the Ryan White HIV/AIDS Program, a federal safety-net plan that serves over half of those in the nation diagnosed with HIV, regardless of their citizenship status.

Hermida said he had a hard time filling out paperwork to stay enrolled in the Ryan White program, and when his eligibility expired in September 2023, he couldn’t get his medication.

He left the clinic and enrolled in a health plan through the Affordable Care Act marketplace. But Hermida didn’t realize the insurer required him to pay for a share of his HIV treatment.

In January, the Lyft driver received a $1,275 bill for his antiretroviral — the equivalent of 120 rides, he said. He paid the bill with a coupon he found online. In April, he got a second bill he couldn’t afford.

For two weeks, he stopped taking the medication that keeps the virus undetectable and intransmissible.

“Estoy que colapso,” he said. I’m falling apart. “Tengo que vivir para pagar la medicación.” I have to live to pay for my medication.

One way to prevent HIV is preexposure prophylaxis, or PrEP, which is regularly taken to reduce the risk of getting HIV through sex or intravenous drug use. It was approved by the federal government in 2012 but the uptake has not been even across racial and ethnic groups: CDC data show much lower rates of PrEP coverage among Latinos than among white Americans.

Epidemiologists say high PrEP use and consistent access to treatment are necessary to build community-level resistance.

Carlos Saldana, an infectious disease specialist and former medical adviser for Georgia’s health department, helped identify five clusters of rapid HIV transmission involving about 40 gay Latinos and men who have sex with men from February 2021 to June 2022. Many people in the cluster told researchers they had not taken PrEP and struggled to understand the health care system.

They experienced other barriers, too, Saldana said, including lack of transportation and fear of deportation if they sought treatment.

Latino health policy advocates want the federal government to redistribute funding for HIV prevention, including testing and access to PrEP. Of the nearly $30 billion in federal money that went toward things like HIV health care services, treatment, and prevention in 2022, only 4% went to prevention, according to a KFF analysis.

They suggest more money could help reach Latino communities through efforts like faith-based outreach at churches, testing at clubs on Latin nights, and training bilingual HIV testers.

Latino Rates Going Up

Congress has appropriated $2.3 billion over five years to the Ending the HIV Epidemic initiative, and jurisdictions that get the money are to invest 25% of it in community-based organizations. But the initiative lacks requirements to target any particular groups, including Latinos, leaving it up to the cities, counties, and states to come up with specific strategies.

In 34 of the 57 areas getting the money, cases are going the wrong way: Diagnosis rates among Latinos increased from 2019 to 2022 while declining for other racial and ethnic groups, the KFF Health News-AP analysis found.

Starting Aug. 1, state and local health departments will have to provide annual spending reports on funding in places that account for 30% or more of HIV diagnoses, the CDC said. Previously, it had been required for only a small number of states.

In some states and counties, initiative funding has not been enough to cover the needs of Latinos.

South Carolina, which saw rates nearly double for Latinos from 2012 to 2022, hasn’t expanded HIV mobile testing in rural areas, where the need is high among Latinos, said Tony Price, HIV program manager in the state health department. South Carolina can pay for only four community health workers focused on HIV outreach — and not all of them are bilingual.

In Shelby County, Tennessee, home to Memphis, the Latino HIV diagnosis rate rose 86% from 2012 to 2022. The health department said it got $2 million in initiative funding in 2023 and while the county plan acknowledges that Latinos are a target group, department director Michelle Taylor said: “There are no specific campaigns just among Latino people.”

Up to now, Mecklenburg County, North Carolina, didn’t include specific targets to address HIV in the Latino population — where rates of new diagnoses more than doubled in a decade but fell slightly among other racial and ethnic groups. The health department has used funding for bilingual marketing campaigns and awareness about PrEP.

Moving for Medicine

When it was time to pack up and move to Hermida’s third city in two years, his fiancé, who is taking PrEP, suggested seeking care in Orlando, Florida.

The couple, who were friends in high school in Venezuela, had some family and friends in Florida, and they had heard about Pineapple Healthcare, a nonprofit primary care clinic dedicated to supporting Latinos living with HIV.

The clinic is housed in a medical office south of downtown Orlando. Inside, the mostly Latino staff is dressed in pineapple-print turquoise shirts, and Spanish, not English, is most commonly heard in appointment rooms and hallways.

“At the core of it, if the organization is not led by and for people of color, then we’re just an afterthought,” said Andres Acosta Ardila, the community outreach director at Pineapple Healthcare, who was diagnosed with HIV in 2013.

“¿Te mudaste reciente, ya por fin?” asked nurse practitioner Eliza Otero. Did you finally move? She started treating Hermida while he still lived in Charlotte. “Hace un mes que no nos vemos.” It’s been a month since we last saw each other.

They still need to work on lowering his cholesterol and blood pressure, she told him. Though his viral load remains high, Otero said it should improve with regular, consistent care.

Pineapple Healthcare, which doesn’t receive initiative money, offers full-scope primary care to mostly Latino males. Hermida gets his HIV medication at no cost there because the clinic is part of a federal drug discount program.

The clinic is in many ways an oasis. The new diagnosis rate for Latinos in Orange County, Florida, which includes Orlando, rose by about a third from 2012 through 2022, while dropping by a third for others. Florida has the third-largest Latino population in the U.S., and had the seventh-highest rate of new HIV diagnoses among Latinos in the nation in 2022.

Hermida, whose asylum case is pending, never imagined getting medication would be so difficult, he said during the 500-mile drive from North Carolina to Florida. After hotel rooms, jobs lost, and family goodbyes, he is hopeful his search for consistent HIV treatment — which has come to define his life the past two years — can finally come to an end.

“Soy un nómada a la fuerza, pero bueno, como me comenta mi prometido y mis familiares, yo tengo que estar donde me den buenos servicios médicos,” he said. I’m forced to be a nomad, but like my family and my fiancé say, I have to be where I can get good medical services.

That’s the priority, he said. “Esa es la prioridad ahora.“

KFF Health News and The Associated Press analyzed data from the U.S. Centers for Disease Control and Prevention on the number of new HIV diagnoses and infections among Americans ages 13 and older at the local, state, and national levels. This story primarily uses incidence rate data — estimates of new infections — at the national level and diagnosis rate data at the state and county level.

Bose reported from Orlando, Florida. Reese reported from Sacramento, California. AP video journalist Laura Bargfeld contributed to this report.

The Associated Press Health and Science Department receives support from the Robert Wood Johnson Foundation. The AP is responsible for all content.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

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

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

Arizona and Florida — whose rates of uninsured children are among the highest in the nation — set goals last year to widen the safety net that provides health insurance to people 18 and younger.

But their plans to expand coverage illustrate key ideological differences on the government’s role in subsidizing health insurance for kids: what to charge low-income families as premiums for public coverage — and what happens if they miss a payment.

“It’s a tale of two states,” said Joan Alker, executive director of Georgetown University’s Center for Children and Families.

That divergence represents more than just two states taking their own path. It showcases a broader breakthrough moment, Alker said, as the nation rethinks how government works for families following the covid-19 pandemic. The divide also underscores the policies at stake in the 2024 presidential election.

Republican-led legislatures in Florida and Arizona worked across party lines in 2023 to pass bills to expand their states’ Children’s Health Insurance Program — widely known as CHIP — which covers anyone younger than 19 in families earning too much to be eligible for Medicaid.

Florida Republican Gov. Ron DeSantis and Arizona Democratic Gov. Katie Hobbs then signed bills into law last year that increased the amount of money a family can make and still be eligible for their states’ CHIP programs. That’s where the similarities end.

Arizona began to enroll newly eligible children in March. That state has adopted policies that align with the Biden administration’s efforts to apply Affordable Care Act-style protections to CHIP, such as eliminating annual and lifetime limits on coverage and lockouts if families don’t pay premiums.

Arizona’s CHIP plan, called KidsCare, suspended its monthly premiums in 2020 and has yet to reinstate them. State officials are considering whether it’s worth the expense to manage and collect the payments given that new federal rules forbid the state from disenrolling children for nonpayment, said Marcus Johnson, a deputy director for the state’s Medicaid agency.

“We’re trying to understand if the juice is worth the squeeze,” he said.

By contrast, Florida has yet to begin its expanded enrollment and is the only state to file a federal lawsuit challenging a Biden administration rule requiring states to keep kids enrolled for 12 months even if their families don’t pay their premiums.

A judge dismissed Florida’s lawsuit on May 31, saying the state could appeal to federal regulators. The state’s CHIP expansion now awaits federal regulatory approval before newly eligible children can be enrolled.

“No eligible child should face barriers to enrolling in CHIP or be at risk of losing the coverage they rely on,” said Sara Lonardo, a spokesperson for the federal Department of Health and Human Services.

Florida’s CHIP expansion calls for significantly raising premiums and then boosting them by 3% annually. The state estimates expansion will cost an additional $90 million in its first full year and expects to collect about $23 million in new premiums to help fund the expansion of what it calls Florida KidCare.

But Florida officials have said that complying with a provision that bars children from being disenrolled for unpaid premiums would cause the state to lose $1 million a month. The state’s 2024 budget allocates $46.5 billion to health care and projects a $14.6 billion surplus.

Florida officials have flouted federal regulations and removed at least 22,000 children from CHIP for unpaid premiums since the rule banning such disenrollments took effect on Jan. 1, according to public records obtained by the Florida Health Justice Project, a nonprofit advocacy group.

For some Floridians, like Emily Dent in Cape Coral, the higher premiums proposed in the state’s expansion plan would create a financial burden, not open a path to self-sufficiency.

Dent, 32, said her 8-year-old son, James, was disenrolled from Medicaid in April because the family’s income was too high. Although James would qualify for CHIP under Florida’s proposed expansion, Dent said the $195 monthly premium would be a financial struggle for her family.

Leaving James uninsured is not an option, Dent said. He is severely disabled due to a rare genetic disorder, Pallister-Killian syndrome, and requires round-the-clock nursing.

“He has to have health insurance,” she said. “But it’s going to drain my savings, which was going to be for a house one day.”

Research shows the cost of premiums can block many families from obtaining and maintaining CHIP coverage even when premiums are low.

And premiums don’t offset much of a state’s costs to operate the program, said Matt Jewett, director of health policy for the Children’s Action Alliance of Arizona, a nonprofit that promotes health insurance coverage for kids in the Grand Canyon State.

He noted that the federal government pays 70% of Florida’s program costs and 75% of Arizona’s — after deducting all premiums collected.

“Premiums are more about an ideological belief that families need to have skin in the game,” he said, “rather than any practical means of paying money to support the program.”

Republican-leaning states are not alone in implementing monthly or quarterly premiums for CHIP. Twenty-two states, including Democratic-leaning states such as New York and Massachusetts, charge premiums.

States have had wide discretion in how they run CHIP since the program became law in 1997, including the ability to charge such premiums and cut people’s access if they failed to pay. That’s been part of its success, said Jennifer Tolbert, deputy director of the Program on Medicaid and the Uninsured at KFF.

“Especially in more conservative states, the ability to create CHIP as a separate program — independent from Medicaid — enabled and fostered that bipartisan support,” Tolbert said.

But in the decades since CHIP was enacted, government’s role in health insurance has evolved, most significantly after President Barack Obama in 2010 signed the Affordable Care Act, which introduced coverage protections and expanded assistance for low-income Americans.

Former President Donald Trump didn’t prioritize those things while in office, Tolbert said. He has suggested that he is open to cutting federal assistance programs if reelected, while the Biden administration has adopted policies to make it easier for low-income Americans to enroll and keep their health coverage.

Just as for Dent, the question of CHIP premiums in this debate isn’t abstract for Erin Booth, a Florida mom who submitted a public comment to federal regulators about Florida’s proposed CHIP expansion. She said she would have to pay a high premium, plus copayments for doctor visits, to keep her 8-year-old son covered.

“I am faced with the impossible decision of whether to pay my mortgage or to pay for health insurance for my son,” she wrote.

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

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

Facing ongoing concerns about rural hospital closures, Capitol Hill lawmakers have introduced a spate of proposals to fix a federal program created to keep lifesaving services in small towns nationwide.

In Anamosa, Iowa — a town of fewer than 6,000 residents located more than 900 miles from the nation’s capital — rural hospital leader Eric Briesemeister is watching for Congress’ next move. The 22-bed hospital Briesemeister runs averages about seven inpatients each night, and its most recent federal filings show it earned just $95,445 in annual net income from serving patients.

Yet Briesemeister isn’t interested in converting the facility into a rural emergency hospital, which would mean getting millions of extra dollars each year from federal payments. In exchange for that financial support, hospitals that join the program keep their emergency departments open and give up inpatient beds.

“It wasn’t for us,” said Briesemeister, chief executive of UnityPoint Health-Jones Regional Medical Center. “I think that program is a little bit more designed for hospitals that might not be around without it.”

Nationwide, only about two dozen of the more than 1,500 eligible hospitals have become rural emergency hospitals since the program launched last year. At the same time, rural hospitals continue to close — 10 since the fix became available.

Federal lawmakers have introduced a handful of legislative solutions since March. In one bill, senators from Kansas and Minnesota list a myriad of tactics, including allowing older closed facilities to reopen.

Another proposal introduced in the House by two Michigan lawmakers is the Rural 340B Access Act. It would allow rural emergency hospitals to use the 340B federal drug discount program, which Congress created in 1992.

The 340B program, named after its federal statute, lets eligible hospitals and clinics buy drugs at a discount and then bill insurance companies, Medicare, or Medicaid at market rates. Hospitals get to keep the money they make from the difference.

Congress approved 340B as an indirect aid package to help struggling hospitals stay afloat. Many larger hospitals say the cash is used for community benefits and charity care, while many small hospitals depend on the drug discounts to help cover staffing and operational shortfalls.

Currently, emergency hospitals are not eligible for 340B discounts. According to a release from U.S. Rep. Jack Bergman, R-Mich., the House proposal would “correct this oversight.” Backers of the House bill include the American Hospital Association and the National Rural Health Association.

In Iowa, Briesemeister said the 340B federal drug discount program “can be used for tremendous good.” The small-town hospital uses money it makes from 340B to subsidize emergency services and uninsured and underinsured patients who frequent the emergency department, he said.

Chuck Grassley, Iowa’s longtime Republican senator, shepherded the Rural Emergency Hospital program into law. His spokesperson, Gillie Maddox, did not respond directly to questions about why the federal law creating rural emergency hospitals omitted the 340B program. Instead, Maddox said the designation was a “product of bipartisan negotiations.”

A survey conducted by the health analytics and consulting firm Chartis, along with the National Rural Health Association, found that nearly 80% of rural hospitals had participated in 340B and nearly 40% said they reaped $750,000 or more annually from the program.

Sanford Health, a largely rural health system headquartered in Sioux Falls, South Dakota, considered converting a handful of smaller critical access hospitals into rural emergency hospitals.

Martha Leclerc, vice president of corporate contracting for Sanford, said the system analyzed how much revenue would be lost by closing inpatient beds, which is also a requirement of the emergency hospital program, and by being unable to file for drug discounts.

In the end, she said, switching did not “make a lot of sense.”

While many rural hospitals are clamoring for the 340B provision to be added to the rural emergency hospital program, opponents have said 340B can be a cash cow for hospitals that don’t serve enough vulnerable patients.

Nicole Longo is deputy vice president of public affairs for the Pharmaceutical Research and Manufacturers of America, the nation’s largest, most influential pharmaceutical lobbying group. She wrote in a recent blog post that hospital systems and chain pharmacies are “exploiting the program” and said patients have not benefited from the growth in the program.

In an interview, Longo said PhRMA supports rural emergency hospitals being able to access 340B because they are treating “vulnerable patients in underserved communities” and are “true safety net providers.”

PhRMA, she said, wants to encourage a thoughtful conversation about “which types of hospitals should be in the program.” Last year, PhRMA formed an unlikely pact with community health centers to create the Alliance to Save America’s 340B Program, or ASAP 340B.

Vacheria Keys, associate vice president of policy and regulatory affairs at the National Association of Community Health Centers, said, “There is a new day of openness, from all parties.”

Use of the drug discount program skyrocketed after provisions in the Patient Protection and Affordable Care Act, passed in 2010, increased the number of hospitals and clinics allowed to contract with an unlimited number of retail pharmacies, such as Walgreens and CVS, which are paid a fee to dispense the discounted drugs.

Adam J. Fein, president of the industry research organization Drug Channels Institute, reports that the 340B program is the second-largest federal drug program, trailing Medicare Part D. The flow of drugs purchased under the 340B program reached $53.7 billion in 2022, about $9.8 billion more than in 2021.

In response to the exploding use of contract pharmacies, pharmaceutical manufacturers have restricted the drugs they offer at a discount through the pharmacies. That throttling is affecting rural hospitals like Labette Health, a Kansas hospital whose president asked President Joe Biden for help in dealing with the pharmaceutical companies.

Rena Conti, an associate professor of markets, public policy, and law at Boston University’s Questrom School of Business, has studied the drug discounts for years and said she has “significant worries about expanding” the 340B program.

“There is a lot of money being generated in this program that we really can’t understand exactly how much that really is and exactly who it is benefiting,” Conti said.

At the same time, said Conti, a health care economist, giving rural hospitals access to the federal drug discounts “makes sense because they are hospitals that are serving particularly vulnerable patient populations.”

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

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

LOS ANGELES — The party was winding down. Its young hosts, María Rivas Cruz and her fiancé, Raymond Olivares, had accompanied friends to their car to bid them farewell. As the couple crossed a four-lane main road back to the home they had just bought, Rivas Cruz and Olivares were struck by a car fleeing an illegal street race. The driver was going 70 in a 40-mph zone.

Despite years of pleading for a two-lane road, lower speed limits, safety islands, and more marked crosswalks, residents say the county had done little to address speeding in this unincorporated pocket of southeastern Los Angeles. Since 2012, this half-mile stretch of Avalon Boulevard had logged 396 crashes, injuring 170 and killing three.

Olivares, 27, a civil engineer for the city of Los Angeles, became the fourth fatality when he was hurled across the street, hit by a second car, and instantly killed. Rivas Cruz was transported to a hospital, where she remained in a coma for two weeks. Once awake, the elementary school teacher underwent a series of reconstructive surgeries to repair her arm, jaw, and legs.

In the aftermath of the February 2023 crash, the county installed protective steel posts midway across the street. But residents, who had sought a platformed center divider and speed cameras, said that wasn’t enough.

“It’s just a band-aid on a cut. This is supposed to solve it, but it doesn’t, and that is what hurts,” said Rivas Cruz, who now at age 28 walks with a cane and lives with chronic pain. “I go to sleep, and I’m like, ‘It’s just a dream, it’s just a dream.’ And it’s not.”

The nation’s road system covers 4 million miles and is governed by a patchwork of federal, state, and local jurisdictions that often operate in silos, making systemic change difficult and expensive. But amid the highest number of pedestrians killed in decades, localities are pushing to control how speed limits are set and for more accountability on road design. This spring, New York and Michigan passed laws allowing local jurisdictions to lower speed limits. In Los Angeles, voters approved a measure that forces the city to act on its own safety improvement plan, mandating that the car-loving metropolis redesign streets, add bike lanes, and protect cyclists, transit riders, and pedestrians.

Still, there’s plenty of political resistance to speed enforcement. In California’s Statehouse, Sen. Scott Wiener (D-San Francisco) proposed requiring GPS-equipped smart devices in new cars and trucks to prevent excessive speeding. But after pushback, the state lawmaker watered down his bill to require all vehicles sold in the state starting in 2032 to have only warning systems that alert drivers when they exceed the speed limit by more than 10 mph.

Although the Biden administration is championing Vision Zero — its commitment to zero traffic deaths — and injecting more than $20 billion in funding for transportation safety programs through the Infrastructure Investment and Jobs Act, road safety advocates and some lawmakers argue that the country is still far from making streets and vehicles safe, or slowing drivers down.

“We are not showing the political will to use the proven safety tools that exist,” said Leah Shahum, founder of Vision Zero Network, a nonprofit organization advancing Vision Zero in communities across the country.

Still a crisis

The need for safer roads took on urgency during the covid pandemic. Fatalities rose even as lockdown mandates emptied streets. In 2022, more than 42,500 people died on American roads, and at least 7,522 pedestrians were fatally struck — the highest tally of pedestrian deaths in more than four decades.

Experts cite several reasons for the decline in road safety. During the lockdowns, reckless driving increased while traffic enforcement declined. SUVs and trucks have become larger and heavier, thus deadlier when they hit a pedestrian. Other factors persist as streets remain wide to accommodate vehicles, and in some states speed limits have gradually increased.

Early estimates of motor vehicle fatalities show a slight decrease from 2022 to 2023, but pedestrian fatalities are still notably above pre-pandemic numbers. “It’s an encouraging start, but the numbers still constitute a crisis,” Transportation Secretary Pete Buttigieg wrote in February of roadway deaths.

The Biden administration has directed $15.6 billion to road safety until 2026 and $5 billion in local grants to prevent roadway deaths and injuries. Under the U.S. Department of Transportation’s new “vulnerable road user” rule, states with 15% or more deaths involving pedestrians, bicyclists, or motorcyclists compared with all road deaths must match federal dollars in their safety improvement spending.

Road safety advocates argue the federal government missed an opportunity to eliminate outdated standards for setting speed limits when it revised traffic guidelines last year. The agency could have eliminated guidance recommending setting speed limits at or below how fast 85% of drivers travel on uncongested roads. Critics contend that what’s known as the 85th percentile rule encourages traffic engineers to set speed limits at levels unsafe for pedestrians.

But the Federal Highway Administration wrote in a statement that while the 85th percentile is the typical method, engineers rarely rely solely on this rule. It also noted that states and some local agencies have their own criteria for setting speed limits.

In response, grassroots efforts to curtail speeding have sprouted across communities. In April, Michigan passed legislation granting local governments authority to round down when setting speed limits.

And after four years of lobbying, New York state passed Sammy’s Law, named after 12-year-old Sammy Cohen Eckstein, who was killed by a driver in Brooklyn in 2013. The law, which will take effect in June, allows New York City to lower its speed limits to 20 mph in designated areas.

“With this legislation, I hope we can learn more children’s names because of their accomplishments, their personalities, and their spirit — not their final moments,” said Sammy’s mother, Amy Cohen.

Push for pedestrian safety

Advocates would also like the federal government to factor in pedestrian safety on the five-star vehicle safety rating scale. However, the National Highway Traffic Safety Administration has proposed a separate pass/fail test that would be posted only on the agency’s website, not on labels consumers would see at the dealership.

Automakers like BMW questioned the effectiveness of a program testing pedestrian protections in vehicles arguing that in European countries that adopted such a regulation, it’s not been clear whether it led to fewer deaths and injuries. According to the campaign finance site Open Secrets, automakers spent about $49 million lobbying in 2023 compared with $2.2 million spent by advocates for highway and auto safety.

“The federal government has the biggest punch when it comes to requiring improved vehicle safety design,” said Wiener, the California state lawmaker.

Although Wiener modified his proposal to restrict excessive speeding, he has advanced companion legislation that would require Caltrans, the state transportation agency, to make improvements such as adding crosswalks and curb extensions on state-owned surface streets to better serve pedestrians, cyclists, and transit users.

When that bill was heard in a committee, opponents, including engineering firms and contractors, cautioned it would remove flexibility and hamper the state’s ability to deliver a safe and efficient transportation system. Lawmakers have until Aug. 31 to act on his bills.

In Los Angeles, hope for change arrived in March when voters passed Measure HLA, which requires the city to invest $3.1 billion in road safety over the next decade. Rivas Cruz’s house, however, sits eight blocks outside the jurisdiction of the city initiative.

It’s been more than a year since the crash, but Rivas Cruz finds reminders everywhere: in the mirror, when she looks at the scars left on her face after several surgeries. When she walks on the street that still lacks the infrastructure that would have protected her and Raymond.

Stories of pedestrians killed in this Latino working-class neighborhood are too common, said Rivas Cruz. In September, she attended a memorial of a 14-year-old who was killed by a reckless driver.

“There’s so much death going on,” the Los Angeles Unified School District teacher said from her mother’s living room on a spring afternoon. “The representatives have failed us. Raymond and I were giving back to the community. He was a civil engineer working for the city, and I’m a LAUSD teacher. Where is our help?”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

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.