Category: Rehab News

Collection agents for the state of Iowa have sent letters seeking millions of dollars from the estates of at least two people with disabilities who died after spending most of their lives in a state institution.

The amounts represent what Medicaid spent covering the residents’ care when they lived at the Glenwood Resource Center, a state-run facility that closed last summer.

The bills are extraordinary examples of a practice called Medicaid estate recovery. Federal law requires states to try to collect money after some types of Medicaid recipients die. The point is to encourage people to use their own resources before relying on the public program. But some states, including Iowa, are particularly aggressive about the collections, national reports show.

Joy Higgins was stunned by a letter she received a few weeks after her 41-year-old daughter, Kristin, died last May. The letter was written on Iowa Department of Health and Human Services stationery. At the top, in bold letters, it said, “Re: Kristin Higgins.”

“Dear Joy Higgins,” the letter read. “Our sincere condolences to you, as we understand the above person is deceased.”

The letter explained that any money Kristin Higgins left behind would have to be remitted to the state to help repay Medicaid $4,263,148.67. Her family had 30 days to respond.

Joy Higgins, who lives in Council Bluffs, wonders why state debt collectors would send a massive bill to the family of someone like her daughter, who had little income because of a severe developmental disability stemming from a premature birth.

“What are they gaining? That’s my question. Except for kicking someone in the face right after they lost a loved one?” Higgins said.

Kristin Higgins’ only income was a Social Security disability benefit of $1,105 monthly. Most of that went directly to the state institution, where she lived for more than 30 years. Just $50 was set aside monthly as an allowance for personal expenses, according to a state ledger obtained by her family. “They knew exactly how much she had,” her mother said.

When she died, Kristin’s personal account had a balance of $2,239.84. The family put that money toward her funeral, an allowed expense. Nothing was left for the state to take. Higgins said receiving the letter was traumatic even though the family didn’t have to pay the Medicaid bill.

The Higginses have heard about similar attempts to collect from other families, including that of Eric Tomlyn, who died in 2020 at age 29 after spending most of his life at the Glenwood Resource Center.

Shortly after his death, the Tomlyn family received a Medicaid bill of more than $4.2 million. His mother, Susan Tomlyn, was shocked by the letter. “I was like, ‘What? What? Oh my God,’” she recalled.

She filled out a form explaining that the small balance in her son’s personal account had gone toward his funeral. “That’s the last I heard of it,” Tomlyn said.

Supporters of estate recovery efforts say the rules encourage people to pay for their own care before applying for Medicaid, which is mainly intended to help those with little money.

Critics of estate recovery programs say they often target families with little to give. Wealthier families tend to have lawyers who can structure estates in ways that avoid Medicaid repayment demands, the critics note.

Like Higgins, Tomlyn thought her Medicaid recovery bill came from state officials because it was printed on letterhead from the Iowa Department of Health and Human Services. The people who signed the letters identified themselves as being from the “Estate Recovery Program.” But the people who produce such letters work for private contractors hired to collect Medicaid debts, according to Alex Murphy, a spokesperson for the state agency. Their contract requires them to use state stationery.

Murphy said in an email to KFF Health News that such letters are sent after every death of an Iowa Medicaid recipient who was at least 55 years old or who lived in a long-term care facility. He said the letters “request information from family members regarding the deceased person’s assets and expenses,” and the letters note that repayments are expected only from the person’s estate.

Iowa’s Medicaid collections are handled by Sumo Group, a Des Moines company. Its director, Ben Chatman, declined to answer questions, including why the company sent bills to families of people with disabilities who lived most of their lives in state institutions. “I don’t do media relations,” Chatman said.

Sumo Group is a subcontractor of a national company, Gainwell Technologies, which has handled Medicaid collections for several states. In Iowa, the company is paid 11% of whatever it can collect from the estates of Medicaid participants. A spokesperson for Gainwell declined to comment.

Iowa’s Medicaid estate recovery program brought in $40.2 million in the fiscal year that ended last June, up nearly 14% from two years earlier, state records show. That total represents a sliver of the state’s total Medicaid budget, which is expected to hit $9 billion this year.

Nearly two-thirds of Iowa estate recovery cases wound up being closed with no collection of money last fiscal year, according to the state. In cases in which money was recouped, the average amount paid was about $10,000.

Thirty-five Iowa families were granted hardship waivers, which the state allows if an heir’s health or life would be endangered because payment of the Medicaid bill would deprive them of food, clothing, shelter, or medical care. Officials denied an additional 20 requests for hardship waivers.

A 2021 report to Congress estimated states collected more than $700 million annually from Medicaid participants’ estates. That money is shared with the federal government, which helps finance Medicaid. Some states claw back much less than others. Hawaii, for example, collected just $31,000 in 2019, the latest year analyzed in the federal report. Iowa, with about twice as many residents as Hawaii, raked back more than $26 million that year.

Americans aren’t subject to such clawbacks for using any other federal health program, including Medicare, which covers older people of all income levels.

The national group Justice in Aging has helped lead opposition to Medicaid estate recovery programs. Eric Carlson, a California attorney for the group, said the issue usually comes into play after the death of a person who had nursing home care covered by Medicaid. Recovery demands often force survivors to sell homes that are their families’ main form of wealth, he said.

Carlson said he hadn’t previously heard of Medicaid estate recovery bills topping $4 million, like the ones sent to survivors of the two Iowans with disabilities.

He wondered why debt collectors would pursue such cases, which are unlikely to yield any money but could cause anxiety for families. “Of course, if you open up a piece of mail that says you owe millions of dollars, you’re going to think the worst,” he said.

Carlson said he would advise anyone who receives such a letter to respond to it with documentation showing that their loved one’s estate can’t repay a Medicaid debt. “It’s never a good idea to ignore it,” he said. Failure to respond to the bill could lead to continued collection efforts, which could threaten a family member’s finances or property, he said.

Some states have reined in their Medicaid clawback efforts. For example, Massachusetts legislators last year voted to drastically limit their program. This was the second time Massachusetts reduced its Medicaid estate recovery effort, which once was one of the most aggressive in the U.S.

Critics in Congress have also tried to limit the practice.

Rep. Jan Schakowsky (D-Ill.) has twice introduced bills to eliminate the federal requirement that states claw back Medicaid spending from recipients’ estates. Last year’s bill gained 47 Democratic co-sponsors, but it received no support from the Republicans controlling the chamber, and there was no similar bill in the Senate. She plans to try again this year, even though her party remains in the minority.

Schakowsky said in an interview that she’d never heard of Medicaid estate recovery demands reaching millions of dollars, as the Iowa families faced. But demands for hundreds of thousands of dollars are common. For many families, “that’s still impossible” to meet, she said.

Schakowsky hopes that members of Congress from both parties will agree to curtail the program once they realize how much angst it causes their constituents and how relatively little money it returns to the government. “The whole program is ridiculous,” she said.

Her quest could become even tougher if the Trump administration moves ahead with proposals to trim Medicaid spending.

The office of Sen. Chuck Grassley, who is the senior member of Iowa’s all-Republican congressional delegation and has taken leading roles in many health policy debates, declined to comment on the issue.

The Iowa Department of Health and Human Services said it notifies families about the estate recovery process when they apply for Medicaid. Joy Higgins said she doesn’t recall seeing such a notice.

The institution where Kristin Higgins spent most of her life was closed last year after federal officials investigated complaints of poor medical care. But Joy Higgins said her daughter was treated well there overall. “If I had millions in the bank, I’d give it to the state,” she said. “I would. It was worth it.”

Has your family been sent bills for repayment of Medicaid expenses after the death of a loved one who was covered by the program? Click here to tell KFF Health News your story.

This article was produced by KFF Health News, 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. 

McMINNVILLE, Tenn. — Each month, Michelle Shaw went to a pain clinic to get the shots that made her back feel worse — so she could get the pills that made her back feel better.

Shaw, 56, who has been dependent on opioid painkillers since she injured her back in a fall a decade ago, said in both an interview with KFF Health News and in sworn courtroom testimony that the Tennessee clinic would write the prescriptions only if she first agreed to receive three or four “very painful” injections of another medicine along her spine.

The clinic claimed the injections were steroids that would relieve her pain, Shaw said, but with each shot her agony would grow. Shaw said she eventually tried to decline the shots, then the clinic issued an ultimatum: Take the injections or get her painkillers somewhere else.

“I had nowhere else to go at the time,” Shaw testified, according to a federal court transcript. “I was stuck.”

Shaw was among thousands of patients of Pain MD, a multistate pain management company that was once among the nation’s most prolific users of what it referred to as “tendon origin injections,” which normally inject a single dose of steroids to relieve stiff or painful joints. As many doctors were scaling back their use of prescription painkillers due to the opioid crisis, Pain MD paired opioids with monthly injections into patients’ backs, claiming the shots could ease pain and potentially lessen reliance on painkillers, according to federal court documents.

Now, years later, Pain MD’s injections have been proved in court to be part of a decade-long fraud scheme that made millions by capitalizing on patients’ dependence on opioids. The Department of Justice has successfully argued at trial that Pain MD’s “unnecessary and expensive injections” were largely ineffective because they targeted the wrong body part, contained short-lived numbing medications but no steroids, and appeared to be based on test shots given to cadavers — people who felt neither pain nor relief because they were dead.

Four Pain MD employees have pleaded guilty or been convicted of health care fraud, including company president Michael Kestner, who was found guilty of 13 felonies at an October trial in Nashville, Tennessee. According to a transcript from Kestner’s trial that became public in December, witnesses testified that the company documented giving patients about 700,000 total injections over about eight years and said some patients got as many as 24 shots at once.

“The defendant, Michael Kestner, found out about an injection that could be billed a lot and paid well,” said federal prosecutor James V. Hayes as the trial began, according to the transcript. “And they turned some patients into human pin cushions.”

The Department of Justice declined to comment for this article. Kestner’s attorneys either declined to comment or did not respond to requests for an interview. At trial, Kestner’s attorneys argued that he was a well-intentioned businessman who wanted to run pain clinics that offered more than just pills. He is scheduled to be sentenced on April 21 in a federal court in Nashville.

According to the transcript of Kestner’s trial, Shaw and three other former patients testified that Pain MD’s injections did not ease their pain and sometimes made it worse. The patients said they tolerated the shots only so Pain MD wouldn’t cut off their prescriptions, without which they might have spiraled into withdrawal.

“They told me that if I didn’t take the shots — because I said they didn’t help — I would not get my medication,” testified Patricia McNeil, a former patient in Tennessee, according to the trial transcript. “I took the shots to get my medication.”

In her interview with KFF Health News, Shaw said that often she would arrive at the Pain MD clinic walking with a cane but would leave in a wheelchair because the injections left her in too much pain to walk.

“That was the pain clinic that was supposed to be helping me,” Shaw said in her interview. “I would come home crying. It just felt like they were using me.”

‘Not Actually Injections Into Tendons at All’

Pain MD, which sometimes operated under the name Mid-South Pain Management, ran as many as 20 clinics in Tennessee, Virginia, and North Carolina throughout much of the 2010s. Some clinics averaged more than 12 injections per patient each month, and at least two patients each received more than 500 shots in total, according to federal court documents.

All those injections added up. According to Medicare data filed in federal court, Pain MD and Mid-South Pain Management billed Medicare for more than 290,000 “tendon origin injections” from January 2010 to May 2018, which is about seven times that of any other Medicare biller in the U.S. over the same period.

Tens of thousands of additional injections were billed to Medicaid and Tricare during those same years, according to federal court documents. Pain MD billed these government programs for about $111 per injection and collected more than $5 million from the government for the shots, according to the court documents.

More injections were billed to private insurance too. Christy Wallace, an audit manager for BlueCross BlueShield of Tennessee, testified that Pain MD billed the insurance company about $40 million for more than 380,000 injections from January 2010 to March 2013. BlueCross paid out about $7 million before it cut off Pain MD, Wallace said.

These kinds of enormous billing allegations are not uncommon in health care fraud cases, in which fraudsters sometimes find a legitimate treatment that insurance will pay for and then overuse it to the point of absurdity, said Don Cochran, a former U.S. attorney for the Middle District of Tennessee.

Tennessee alone has seen fraud allegations for unnecessary billing of urine testing, skin creams, and other injections in just the past decade. Federal authorities have also investigated an alleged fraud scheme involving a Tennessee company and hundreds of thousands of catheters billed to Medicare, according to The Washington Post, citing anonymous sources.

Cochran said the Pain MD case felt especially “nefarious” because it used opioids to make patients play along.

“A scheme where you get Medicare or Medicaid money to provide a medically unnecessary treatment is always going to be out there,” Cochran said. “The opioid piece just gives you a universe of compliant people who are not going to question what you are doing.”

“It was only opioids that made those folks come back,” he said.

The allegations against Pain MD became public in 2018 when Cochran and the Department of Justice filed a civil lawsuit against the company, Kestner, and several associated clinics, alleging that Pain MD defrauded taxpayers and government insurance programs by billing for “tendon origin injections” that were “not actually injections into tendons at all.”

Kestner, Pain MD, and several associated clinics have each denied all allegations in that lawsuit, which is ongoing.

Scott Kreiner, an expert on spine care and pain medicine who testified at Kestner’s criminal trial, said that true tendon origin injections (or TOIs) typically are used to treat inflamed joints, like the condition known as “tennis elbow,” by injecting steroids or platelet-rich plasma into a tendon. Kreiner said most patients need only one shot at a time, according to the transcript.

But Pain MD made repeated injections into patients’ backs that contained only lidocaine or Marcaine, which are anesthetic medications that cause numbness for mere hours, Kreiner testified. Pain MD also used needles that were often too short to reach back tendons, Kreiner said, and there was no imaging technology used to aim the needle anyway. Kreiner said he didn’t find any injections in Pain MD’s records that appeared medically necessary, and even if they had been, no one could need so many.

“I simply cannot fathom a scenario where the sheer quantity of TOIs that I observed in the patient records would ever be medically necessary,” Kreiner said, according to the trial transcript. “This is not even a close call.”

Jonathan White, a physician assistant who administered injections at Pain MD and trained other employees to do so, then later testified against Kestner as part of a plea deal, said at trial that he believed Pain MD’s injection technique was based on a “cadaveric investigation.”

According to the trial transcript, White said that while working at Pain MD he realized he could find no medical research that supported performing tendon origin injections on patients’ backs instead of their joints. When he asked if Pain MD had any such research, White said, an employee responded with a two-paragraph letter from a Tennessee anatomy professor — not a medical doctor — that said it was possible to reach the region of back tendons in a cadaver by injecting “within two fingerbreadths” of the spine. This process was “exactly the procedure” that was taught at Pain MD, White said.

During his own testimony, Kreiner said it was “potentially dangerous” to inject a patient as described in the letter, which should not have been used to justify medical care.

“This was done on a dead person,” Kreiner said, according to the trial transcript. “So the letter says nothing about how effective the treatment is.”

Over-Injecting ‘Killed My Hand’

Pain MD collapsed into bankruptcy in 2019, leaving some patients unable to get new prescriptions because their medical records were stuck in locked storage units, according to federal court records.

At the time, Pain MD defended the injections and its practice of discharging patients who declined the shots. When a former patient publicly accused the company of treating his back “like a dartboard,” Pain MD filed a defamation lawsuit, then dropped the suit about a month later.

“These are interventional clinics, so that’s what they offer,” Jay Bowen, a then-attorney for Pain MD, told The Tennessean newspaper in 2019. “If you don’t want to consider acupuncture, don’t go to an acupuncture clinic. If you don’t want to buy shoes, don’t go to a shoe store.”

Kestner’s trial told another story. According to the trial transcript, eight former Pain MD medical providers testified that the driving force behind Pain MD’s injections was Kestner himself, who is not a medical professional and yet regularly pressured employees to give more shots.

One nurse practitioner testified that she received emails “every single workday” pushing for more injections. Others said Kestner openly ranked employees by their injection rates, and implied that those who ranked low might be fired.

“He told me that if I had to feed my family based on my productivity, that they would starve,” testified Amanda Fryer, a nurse practitioner who was not charged with any crime.

Brian Richey, a former Pain MD nurse practitioner who at times led the company’s injection rankings, and has since taken a plea deal that required him to testify in court, said at the trial that he “performed so many injections” that his hand became chronically inflamed and required surgery.

“‘Over injecting killed my hand,’” Richey said on the witness stand, reading a text message he sent to another Pain MD employee in 2017, according to the trial transcript. “‘I was in so much pain Injecting people that didnt want it but took it to stay a patient.’”

“Why would they want to stay there?” a prosecutor asked.

“To keep getting their narcotics,” Richey responded, according to the trial transcript.

Throughout the trial, defense attorney Peter Strianse argued that Pain MD’s focus on injections was a result of Kestner’s “obsession” with ensuring that the company “would never be called a pill mill.”

Strianse said that Kestner “stayed up at night worrying” about patients coming to clinics only to get opioid prescriptions, so he pushed his employees to administer injections, too.

“Employers motivating employees is not a crime,” Strianse said at closing arguments, according to the court transcript. “We get pushed every day to perform. It’s not fraud; it’s a fact of life.”

Prosecutors insisted that this defense rang hollow. During the trial, former employees had testified that most patients’ opioid dosages remained steady or increased while at Pain MD, and that the clinics did not taper off the painkillers no matter how many injections were given.

“Giving them injections does not fix the pill mill problem,” federal prosecutor Katherine Payerle said during closing arguments, according to the trial transcript. “The way to fix being a pill mill is to stop giving the drugs or taper the drugs.”

This article was produced by KFF Health News, 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. 

Sonya Stokes, an emergency room physician in the San Francisco Bay Area, braces herself for a daily deluge of patients sick with coughs, soreness, fevers, vomiting, and other flu-like symptoms.

She’s desperate for information, but the Centers for Disease Control and Prevention, a critical source of urgent analyses of the flu and other public health threats, has gone quiet in the weeks since President Donald Trump took office.

“Without more information, we are blind,” she said.

Flu has been brutal this season. The CDC estimates at least 24 million illnesses, 310,000 hospitalizations, and 13,000 deaths from the flu since the start of October. At the same time, the bird flu outbreak continues to infect cattle and farmworkers. But CDC analyses that would inform people about these situations are delayed, and the CDC has cut off communication with doctors, researchers, and the World Health Organization, say doctors and public health experts.

“CDC right now is not reporting influenza data through the WHO global platforms, FluNet [and] FluID, that they’ve been providing information [on] for many, many years,” Maria Van Kerkhove, interim director of epidemic and pandemic preparedness at the WHO, said at a Feb. 12 press briefing.

“We are communicating with them,” she added, “but we haven’t heard anything back.”

On his first day in office, President Donald Trump announced the U.S. would withdraw from the WHO.

A critical analysis of the seasonal flu selected for distribution through the CDC’s Health Alert Network has stalled, according to people close to the CDC. They asked not to be identified because of fears of retaliation. The network, abbreviated as HAN, is the CDC’s main method of sharing urgent public health information with health officials, doctors, and, sometimes, the public.

A chart from that analysis, reviewed by KFF Health News, suggests that flu may be at a record high. About 7.7% of patients who visited clinics and hospitals without being admitted had flu-like symptoms in early February, a ratio higher than in four other flu seasons depicted in the graph. That includes 2003-04, when an atypical strain of flu fueled a particularly treacherous season that killed at least 153 children.

Without a complete analysis, however, it’s unclear whether this tidal wave of sickness foreshadows a spike in hospitalizations and deaths that hospitals, pharmacies, and schools must prepare for. Specifically, other data could relay how many of the flu-like illnesses are caused by flu viruses — or which flu strain is infecting people. A deeper report might also reveal whether the flu is more severe or contagious than usual.

“I need to know if we are dealing with a more virulent strain or a coinfection with another virus that is making my patients sicker, and what to look for so that I know if my patients are in danger,” Stokes said. “Delays in data create dangerous situations on the front line.”

Although the CDC’s flu dashboard shows a surge of influenza, it doesn’t include all data needed to interpret the situation. Nor does it offer the tailored advice found in HAN alerts that tells health care workers how to protect patients and the public. In 2023, for example, a report urged clinics to test patients with respiratory symptoms rather than assume cases are the flu, since other viruses were causing similar issues that year.

“This is incredibly disturbing,” said Rachel Hardeman, a member of the Advisory Committee to the Director of the CDC. On Feb. 10, Hardeman and other committee members wrote to acting CDC Director Susan Monarez asking the agency to explain missing data, delayed studies, and potentially severe staff cuts. “The CDC is vital to our nation’s security,” the letter said.

Several studies have also been delayed or remain missing from the CDC’s preeminent scientific publication, the Morbidity and Mortality Weekly Report. Anne Schuchat, a former principal deputy director at the CDC, said she would be concerned if there was political oversight of scientific material: “Suppressing information is potentially confusing, possibly dangerous, and it can backfire.”

CDC spokesperson Melissa Dibble declined to comment on delayed or missing analyses. “It is not unexpected to see flu activity elevated and increasing at this time of the year,” she said.

A draft of one unpublished study, reviewed by KFF Health News, that has been withheld from the MMWR for three weeks describes how a milk hauler and a dairy worker in Michigan may have spread bird flu to their pet cats. The indoor cats became severely sick and died. Although the workers weren’t tested, the study says that one of them had irritated eyes before the cat fell ill — a common bird flu symptom. That person told researchers that the pet “would roll in their work clothes.”

After one cat became sick, the investigation reports, an adolescent in the household developed a cough. But the report says this young person tested negative for the flu, and positive for a cold-causing virus.

Corresponding CDC documents summarizing the cat study and another as-yet unpublished bird flu analysis said the reports were scheduled to be published Jan. 23. These were reviewed by KFF Health News. The briefing on cats advises dairy farmworkers to “remove clothing and footwear, and rinse off any animal biproduct residue before entering the household to protect others in the household, including potentially indoor-only cats.”

The second summary refers to “the most comprehensive” analysis of bird flu virus detected in wastewater in the United States.

Jennifer Nuzzo, director of the Pandemic Center at Brown University, said delays of bird flu reports are upsetting because they’re needed to inform the public about a worsening situation with many unknown elements. Citing “insufficient data” and “high uncertainty,” the United Kingdom raised its assessment of the risk posed by the U.S. outbreak on dairies.

“Missing and delayed data causes uncertainty,” Nuzzo said. “It also potentially makes us react in ways that are counterproductive.”

Another bird flu study slated for January publication showed up in the MMWR on Feb. 13, three weeks after it was expected. It revealed that three cattle veterinarians had been unknowingly infected last year, based on the discovery of antibodies against the bird flu virus in their blood. One of the veterinarians worked in Georgia and South Carolina, states that haven’t reported outbreaks on dairy farms.

The study provides further evidence that the United States is not adequately detecting cases in cows and people. Nuzzo said it also highlights how data can supply reassuring news. Only three of 150 cattle veterinarians had signs of prior infections, suggesting that the virus doesn’t easily spread from the animals into people. More than 40 dairy workers have been infected, but they generally have had more sustained contact with sick cattle and their virus-laden milk than veterinarians.

Instead, recently released reports have been about wildfires in California and Hawaii.

“Interesting but not urgent,” Nuzzo said, considering the acute fire emergencies have ended. The bird flu outbreak, she said, is an ongoing “urgent health threat for which we need up-to-the-minute information to know how to protect people.”

“The American public is at greater risk when we don’t have information on a timely basis,” Schuchat said.

This week, a federal judge ordered the CDC and other health agencies to “restore” datasets and websites that the organization Doctors for America had identified in a lawsuit as having been altered. Further, the judge ordered the agencies to “identify any other resources that DFA members rely on to provide medical care” and restore them by Feb. 14.

In their letter, CDC advisory committee members requested an investigation into missing data and delayed reports. Hardeman, an adviser who is a health policy expert at the University of Minnesota, said the group didn’t know why data and scientific findings were being withheld or removed. Still, she added, “I hold accountable the acting director of the CDC, the head of HHS, and the White House.”

Hardeman said the Trump administration has the power to disband the advisory committee. She said the group expects that to happen but proceeded with its demands regardless.

“We want to safeguard the rigor of the work at the CDC because we care deeply about public health,” she said. “We aren’t here to be silent.”

This article was produced by KFF Health News, 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. 

Nothing sweeps us off our feet like a health policy valentine. Readers showed their love this season, writing poetic lines about surprise medical bills, bird flu, the cost of health care, and more. 

Here are some of our favorites, starting with the grand prize winner, whose entry was turned into a cartoon by staff illustrator Oona Zenda. 

1st Place

Runner-Up

What to make for my valentine?
Maybe a cake on which we can dine!
But raw milk and flu-ish eggs won’t do.
Perhaps some fluoridated water in lieu?

– Holly Ainsworth 

Other Newsroom Favorites 

Measles are red.
Chickenpox is too.
Let’s stick with vaccines
And fight covid and flu.

– Arielle Levin Becker 

The donut hole is closed, my dear;
Our Part D costs are capped.
Let’s hope our love survives alongside
The Inflation Reduction Act. 

– Brandy Bauer 

My love for you is like health care as a percentage of GDP. It grows larger every year.

– David Schleifer 

The Host

Congress has mostly stood by as the Trump administration — spurred by Elon Musk and his Department of Government Efficiency, named and created by President Donald Trump  — takes a chainsaw to a broad array of government programs. But now the courts are stepping in to slow or stop some efforts that critics claim are illegal, unconstitutional, or both.

Funding freezes and contract cancellations are already having a chilling effect on health programs, such as biomedical research grants for the National Institutes of Health, humanitarian and health aid provided overseas by the U.S. Agency for International Development, and federal funding owed to community health centers and other domestic agencies.

This week’s panelists are Julie Rovner of KFF Health News, Jessie Hellmann of CQ Roll Call, Shefali Luthra of The 19th, and Maya Goldman of Axios.

Among the takeaways from this week’s episode:

• Universities are reconsidering hiring and other forward-looking actions after the Trump administration imposed an abrupt, immediate cap on indirect costs, which help cover overhead and related expenses that aren’t included in federal research grants. A slowdown at research institutions could undermine the prospects for innovation generally — and the nation’s economy specifically, as the United States relies quite a bit on those jobs and the developments they produce.
• The Trump administration’s decision to apply the cap on indirect costs to not only future but also current federal grants specifically violates the terms of spending legislation passed by Congress. Meanwhile, the health impacts of the sudden shuttering of USAID are becoming clear, including concerns about how unprepared the nation could be for a health threat that emerges abroad.
• Congress still hasn’t approved a full funding package for this year, and Republicans don’t seem to be in a hurry to do more than extend the current extension — and pass a budget resolution to fund Trump’s priorities and defund his chosen targets.
• The House GOP budget resolution package released this week includes a call for $880 billion in spending cuts that is expected to hit Medicaid hard. House Republican leaders say they’re weighing imposing work requirements, but only a small percentage of Medicaid beneficiaries would be subject to that change, as most would be exempt due to disability or other reasons — or are already working. Cuts to Medicaid could have cascading consequences, including for the national problem of maternal mortality.

Also this week, Rovner interviews Mark McClellan — director of the Duke-Margolis Institute for Health Policy who led the FDA and the Centers for Medicare & Medicaid Services during the George W. Bush administration — about the impact of cutting funding to research universities. And Rovner reads the winner of the annual KFF Health News’ “health policy valentines” contest.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too: 

Julie Rovner: Axios’ “Nonprofit Hospital Draws Backlash for Super Bowl Ad,” by Maya Goldman. 

Shefali Luthra: Politico’s “‘Americans Can and Will Die From This’: USAID Worker Details Dangers, Chaos,” by Jonathan Martin. 

Maya Goldman: KFF Health News’ “Doctor Wanted: Small Town in Florida Offers Big Perks To Attract a Physician,” by Daniel Chang.

Jessie Hellmann: NPR’s “Trump’s Ban on Gender-Affirming Care for Young People Puts Hospitals in a Bind,” by Selena Simmons-Duffin. 

Also mentioned in this week’s podcast:

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

This article was produced by KFF Health News, 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. 

In Arkansas, state health officials announced a stunning statistic for 2023: The total number of abortions in the state, where some 1.5 million women live, was zero.

In South Dakota, too, official records show zero abortions that year.

And in Idaho, home to abortion battles that have recently made their way to the U.S. Supreme Court, the official number of recorded abortions was just five.

In nearly a dozen states with total or near-total abortion bans, government officials claimed that zero or very few abortions occurred in 2023, the first full year after the Supreme Court eliminated federal abortion rights.

Those statistics, the most recent available and published in government records, have been celebrated by anti-abortion activists. Medical professionals say such accounts are not only untrue but fundamentally dishonest.

“To say there are no abortions going on in South Dakota is ludicrous,” said Amy Kelley, an OB-GYN in Sioux Falls, South Dakota, citing female patients who have come to her hospital after taking abortion pills or to have medical procedures meant to prevent death or end nonviable pregnancies. “I can think of five off the top of my head that I dealt with,” she said, “and I have 15 partners.”

For some data scientists, these statistics also suggest a troubling trend: the potential politicization of vital statistics.

“It’s so clinically dishonest,” said Ushma Upadhyay, a public health scientist at the University of California-San Francisco, who co-chairs WeCount, an academic research effort that has kept a tally of the number of abortions nationwide since April 2022.

The zeroing out is statistically unlikely, Upadhyay said, and also runs counter to the reality that pregnancy “comes with many risks and in many cases emergency abortion care will be needed.”

“We know they are sometimes necessary to save the pregnant person’s life,” she said, “so I do hope there are abortions occurring in South Dakota.”

State officials reported a sharp decline in the official number of abortions after the Supreme Court overturned Roe v. Wade in June 2022.

• Arkansas reported zero abortions in 2023, compared with 1,621 in 2022.
• Texas reported 60 in 2023, after reporting 50,783 abortions in the state in 2021.
• Idaho reported five in 2023 compared with 1,553 in 2021.
• South Dakota, which had severely restricted abortions years ahead of the Dobbs ruling, reported zero in 2023 compared with 192 abortions in 2021.

Anti-abortion politicians and activists have cited these statistics to bolster their claims that their decades-long crusade to end abortion is a success.

“Undoubtedly, many Arkansas pregnant mothers were spared from the lifelong regrets and physical complications abortion can cause and babies are alive today in Arkansas,” Rose Mimms, executive director of Arkansas Right to Life, said in a press statement. “That’s a win-win for them and our state.”

A spokesperson for the Arkansas Department of Health, Ashley Whitlow, said in an email that the department “is not able to track abortions that take place out of the state or outside of a healthcare facility.” State officials, she said, collect data from “in-state providers and facilities for the Induced Abortion data reports as required by Arkansas law.”

WeCount’s tallies of observed telehealth abortions do not appear in the official state numbers. For instance, from April to June 2024 it counted an average of 240 telehealth abortions a month in Arkansas.

Groups that oppose abortion rights acknowledge that state surveillance reports do not tell the full story of abortion care occurring in their states. Mimms, of Arkansas Right to Life, said she would not expect abortions to be reported in the state, since the procedure is illegal except to prevent a patient’s death.

“Women are still seeking out abortions in Arkansas, whether it’s illegally or going out of state for illegal abortion,” Mimms told KFF Health News. “We’re not naive.”

The South Dakota Department of Health “compiles information it receives from health care organizations around the state and reports it accordingly,” Tia Kafka, its marketing and outreach director, said in an email responding to questions about the statistics. Kafka declined to comment on specific questions about abortions being performed in the state or characterizations that South Dakota’s report is flawed.

Kim Floren, who serves as director of the Justice Empowerment Network, which provides funds and practical support to help South Dakota patients receive abortion care, expressed disbelief in the state’s official figures.

“In 2023, we served over 500 patients,” she said. “Most of them were from South Dakota.”

“For better or worse, government data is the official record,” said Ishan Mehta, director for media and democracy at Common Cause, the nonpartisan public interest group. “You are not just reporting data. You are feeding into an ecosystem that is going to have much larger ramifications.”

When there is a mismatch in the data reported by state governments and credible researchers, including WeCount and the Guttmacher Institute, a reproductive health research group that supports abortion rights, state researchers need to dig deeper, Mehta said.

“This is going to create a historical record for archivists and researchers and people who are going to look at the decades-long trend and try to understand how big public policy changes affected maternal health care,” Mehta said. And now, the recordkeepers “don’t seem to be fully thinking through the ramifications of their actions.”

A Culture of Fear

Abortion rights supporters agree that there has been a steep drop in the number of abortions in every state that enacted laws criminalizing abortion. In states with total bans, 63 clinics have stopped providing abortions. And doctors and medical providers face criminal charges for providing or assisting in abortion care in at least a dozen states.

Practitioners find themselves working in a culture of confusion and fear, which could contribute to a hesitancy to report abortions — despite some state efforts to make clear when abortion is allowed.

For instance, South Dakota Department of Health Secretary Melissa Magstadt released a video to clarify when an abortion is legal under the state’s strict ban.

The procedure is legal in South Dakota only when a pregnant woman is facing death. Magstadt said doctors should use “reasonable medical judgment” and “document their thought process.”

Any doctor convicted of performing an unlawful abortion faces up to two years in prison.

In the place of reliable statistics, academic researchers at WeCount use symbols like dashes to indicate they can’t accurately capture the reality on the ground.

“We try to make an effort to make clear that it’s not zero. That’s the approach these departments of health should take,” said WeCount’s Upadhyay, adding that health departments “should acknowledge that abortions are happening in their states but they can’t count them because they have created a culture of fear, a fear of lawsuits, having licenses revoked.”

“Maybe that’s what they should say,” she said, “instead of putting a zero in their reports.”

Mixed Mandates for Abortion Data

For decades, dozens of states have required abortion providers to collect detailed demographic information on the women who have abortions, including race, age, city, and county — and, in some cases, marital status and the reason for ending the pregnancy.

Researchers who compile data on abortion say there can be sound public health reasons for monitoring the statistics surrounding medical care, namely to evaluate the impact of policy changes. That has become particularly important in the wake of the Supreme Court’s 2022 Dobbs decision, which ended the federal right to an abortion and opened the door to laws in Republican-led states restricting and sometimes outlawing abortion care.

Isaac Maddow-Zimet, a Guttmacher data scientist, said data collection has been used by abortion opponents to overburden clinics with paperwork and force patients to answer intrusive questions. “It’s part of a pretty long history of those tools being used to stigmatize abortion,” he said.

In South Dakota, clinic staff members were required to report the weight of the contents of the uterus, including the woman’s blood, a requirement that had no medical purpose and had the effect of exaggerating the weight of pregnancy tissue, said Floren, who worked at a clinic that provided abortion care before the state’s ban.

“If it was a procedural abortion, you had to weigh everything that came out and write that down on the report,” Floren said.

The Centers for Disease Control and Prevention does not mandate abortion reporting, and some Democratic-led states, including California, do not require clinics or health care providers to collect data. Each year, the CDC requests abortion data from the central health agencies for every state, the District of Columbia, and New York City, and these states and jurisdictions voluntarily report aggregated data for inclusion in the CDC’s annual “Abortion Surveillance” report.

In states that mandate public abortion tracking, hospitals, clinics, and physicians report the number of abortions to state health departments in what are typically called “induced termination of pregnancy” reports, or ITOPs.

Before Dobbs, such reports recorded procedural and medication abortions. But following the elimination of federal abortion rights, clinics shuttered in states with criminal abortion bans. More patients began accessing abortion medication through online organizations, including Aid Access, that do not fall under mandatory state reporting laws.

At least six states have enacted what are called “shield laws” to protect providers who send pills to patients in states with abortion bans. That includes New York, where Linda Prine, a family physician employed by Aid Access, prescribes and sends abortion pills to patients across the country.

Asked about states reporting zero or very few abortions in 2023, Prine said she was certain those statistics were wrong. Texas, for example, reported 50,783 abortions in the state in 2021. Now the state reports on average five a month. WeCount reported an average of 2,800 telehealth abortions a month in Texas from April to June 2024.

“In 2023, Aid Access absolutely mailed pills to all three states in question — South Dakota, Arkansas, and Texas,” Prine said.

Texas Attorney General Ken Paxton filed a lawsuit in January against a New York-based physician, Maggie Carpenter, co-founder of the Abortion Coalition for Telemedicine, for prescribing abortion pills to a Texas patient in violation of Texas’ near-total abortion ban. It’s the first legal challenge to New York’s shield law and threatens to derail access to medication abortion.

Still, some state officials in states with abortion bans have sought to choke off the supply of medication that induces abortion. In May, Arkansas Attorney General Tim Griffin wrote cease and desist letters to Aid Access in the Netherlands and Choices Women’s Medical Center in New York City, stating that “abortion pills may not legally be shipped to Arkansas” and accusing the medical organizations of potentially “false, deceptive, and unconscionable trade practices” that carry up to $10,000 per violation.

Good-government groups like Common Cause say that the dangers of officials relying on misleading statistics are myriad, including a disintegration of public trust as well as ill-informed legislation.

These concerns have been heightened by misinformation surrounding health care, including an entrenched and vocal anti-vaccine movement and the objections of some conservative politicians to mandates related to covid-19, including masks, physical distancing, and school and business closures.

“If the state is not going to put in a little more than the bare minimum to just find out if their data is accurate or not,” Mehta said, “we are in a very dangerous place.”

This article was produced by KFF Health News, 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. 

Prices for brand-name drugs in the U.S. are three times what the same drugs cost in other countries. And in a recent KFF survey, 3 in 10 adults reported not taking their medicine as prescribed at some point in the past year because of costs.

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This article was produced by KFF Health News, 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. 

California Gov. Gavin Newsom and state legislators in Sacramento seem to agree: Prescription drug prices are too high. But lawmakers and the second-term governor are at odds over what to do about it, and a recent proposal could trigger one of the biggest health care battles in Sacramento this year.

A California bill awaiting its first hearing would subject drug industry intermediaries known as pharmacy benefit managers, or PBMs, to licensing by the state Department of Insurance. And it would require them to pass along 100% of the rebates they get from drug companies to the health plans and insurers that hire them to oversee prescription drug benefits.

But the proposal, which would impose some of the toughest PBM regulations in the nation, faces at least one major hurdle: Newsom. He vetoed a similar measure last year, unconvinced it would lower consumer costs. He signaled his intent to offer an alternative but has yet to reveal it.

Any fight over PBM reform promises to be a pricey one. Interest groups on both sides spent at least $7 million combined lobbying California lawmakers and the Newsom administration on health care last year, according to records filed with the secretary of state.

“This bill directly threatens the profitability of PBMs going forward,” said Ge Bai, a health policy professor at Johns Hopkins University who has tracked similar bills in other states. “These bills are really the result of an interindustry dog fight, and these are ridiculously fierce fights because PBMs control revenue for pharmacies, as well as for manufacturers.”

The country’s top three PBMs —CVS Caremark, affiliated with Aetna; UnitedHealth Group’s Optum Rx; and Express Scripts, owned by Cigna — control roughly 80% of prescriptions in the United States, according to the Federal Trade Commission. In theory, they leverage their buying power to extract steep discounts from drug manufacturers and pass savings along to insurance companies and employers who provide health coverage.

But as prescription drug prices continue to spiral and federal efforts to control them stall, state lawmakers are focusing on PBMs, which help insurers decide which drugs their plans cover and how much patients will pay out-of-pocket to get them. However, they have been stymied by the drug industry’s secretive ecosystem of rebates, reimbursements, and obscure fees, thwarting efforts to lower drug costs.

In addition to California, PBM proposals have been introduced this legislative session in Arkansas, Iowa, and at least 20 other states as of Feb. 10, according to the National Academy for State Health Policy. All 50 states and Washington, D.C., have some sort of PBM regulation on the books.

And although President Donald Trump has criticized PBMs and vowed to “knock out the middleman,” his recent actions undoing moves to lower prescription drug prices have left some health care experts skeptical that meaningful reform will come from Washington, D.C.

Meanwhile, state data shows California health plan drug costs have grown by more than 50% since 2017. California insurers spent 11% more on pharmaceuticals in 2023 than in 2022, with specialty and brand-name drugs driving the increase.

Both Newsom and bill author Sen. Scott Wiener (D-San Francisco) have said PBMs play a role in high drug prices. While Wiener wants to ban some of their practices outright, Newsom has so far taken a more measured approach, calling for more disclosure and pointing to his plan for the state to manufacture its own generic drugs, which has yet to get off the ground.

In vetoing Wiener’s 2024 bill, which passed in a near-unanimous bipartisan vote, Newsom said he was unconvinced that licensing PBMs would improve affordability for patients and instead directed his administration to “propose a legislative approach” to gather more data from PBMs. In a statement, Newsom spokesperson Elana Ross noted that “Big Pharma backed the vetoed bill” and said the Democratic governor, in partnership with the legislature, will take action to address PBMs this year. She declined to elaborate.

In his January budget proposal, Newsom said his administration was “exploring approaches to increase transparency” in the entire drug supply chain, not just PBMs.

Industry representatives say they’re being unfairly targeted with transparency laws and regulations and blame pharmaceutical companies for setting high drug prices.

“The PBM is taking the risk on price variation, and it allows the client to have certainty on what they’re going to be paying,” said Bill Head, an assistant vice president of state affairs for the Pharmaceutical Care Management Association, which represents PBMs. “We’re hired because it works. It saves money at the end of the day.”

He said PBMs pass on more than 95% of the rebates they receive from drugmakers — a number health policy researchers say is hard to verify.

Consumer advocates say drugmakers simply raise their prices to maintain profits and PBMs charge insurers far more for many medicines than pharmacies are paid to actually dispense them, a practice known as spread pricing.

A January report by the Federal Trade Commission found the three biggest PBMs appeared to steer the most profitable prescriptions away from competitors and to their affiliated pharmacies, which they reimbursed at markups exceeding 1,000% for some drugs, including some used to treat cancer, multiple sclerosis, and serious lung conditions. Over a six-year period, the analysis found, those PBMs and their affiliated pharmacies made roughly $8.7 billion in additional revenue by marking up prices on a sample of 51 specialty drugs.

Wiener’s latest bill, SB 41, would ban such markups, as well as spread pricing, and bar PBMs from receiving performance bonuses based on drug rebates. Similar provisions were stripped out of last year’s bill in the final days before its passage.

“These are practices that only PBMs are engaging in and they’re causing harm, reducing consumer choice, increasing drug costs, and it’s time to address them,” Wiener said. “I’m not going to let that idea just evaporate because of one veto.”

Clint Hopkins, who has co-owned Pucci’s Pharmacy in Sacramento since 2016, said he often deals with complaints from frustrated patients who don’t understand drug pricing schemes and restrictions set by pharmacy benefit managers.

He’s had to turn away customers whose drugs can cost him hundreds of dollars in losses each time they’re filled and says spread pricing is helping drive independent pharmacies out of business.

“I’m not asking to be paid more. I am asking to be paid fairly — at cost or above.”

Under current law, California requires PBMs to disclose some information about drug rebates, and other information, to its clients. That data is often labeled as proprietary to the companies, leaving an incomplete picture of the supply chain, said Maureen Hensley-Quinn, a senior program director at the National Academy for State Health Policy.

PBM representatives say pharmacies, insurers, and other actors in the supply chain should have to disclose information about their profits and practices, too.

“You want to look under the hood?” Head said. “We’re open to that, but let’s look under everybody’s hood.”

Bai said lawmakers are likely going after PBMs because insurers are one portion of the supply chain that they have the power to regulate. But she warned such legislation could cost consumers more if drugmakers and pharmacies remain unchecked. A better approach, Bai suggested, would be to bar PBMs entirely from managing benefits for generic drugs, one of their biggest revenue sources.

“In health care, there’s no saint and there’s no villain. Everybody’s trying to make money,” Bai said. “These fights will bring no benefit to patients unless we go to the root.”

This article was produced by KFF Health News, 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.