by David Armstrong

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The pain jolted me awake. It was barely dawn, a misty February morning in 2023. My side felt as if I’d been stabbed.

I had been dealing with pain for weeks — a bothersome ache that felt like a bad runner’s cramp. But now it was so intense I had to brace myself against the wall to stand up.

A few hours after arriving at the emergency room, I heard my name. A doctor asked me to follow him to a private area, where he told me a scan had uncovered something “concerning.”

There were lesions, areas of bone destruction, on top of both of my hip bones and on my sternum. These were hallmarks of multiple myeloma. “Cancer,” he said.

Multiple myeloma is a blood cancer that ravages bone, leaving distinctive holes in its wake. Subsequent scans showed “innumerable lesions” from my neck to my feet as well as two broken ribs and a compression fracture in my spine. There is no cure.

I walked out of the ER in search of fresh air. I sat on a metal bench and did what many patients do. I turned to Google. The first link was a medical review stating that the average lifespan of a newly diagnosed patient was three to five years. My stomach churned.

I soon learned that information was outdated. Most patients today live much longer, in large part due to a drug with a horrific past. It was a doctor at the hospital who first told me I would likely take a thalidomide drug as part of my treatment.

That couldn’t be possible, I told him.

I knew the story of thalidomide, or at least I thought I did. It represented one of the darkest chapters in the history of modern medicine, having caused thousands of severe birth defects after it was given to pregnant women in the 1950s and 1960s. The drug was banned in most of the world, and the scandal gave rise to the modern-day U.S. Food and Drug Administration.

It turns out the drug once relegated to a pharmaceutical graveyard had new life as a cancer fighter.

That drug I take is called Revlimid. It is a derivative of thalidomide, a slightly tweaked version of the parent compound.

Revlimid is now one of the bestselling pharmaceutical products of all time, with total sales of more than $100 billion. It has extended tens of thousands of lives — including my own.

But Revlimid is also, I soon learned, extraordinarily expensive, costing nearly $1,000 for each daily pill. (Although, I later discovered, a capsule costs just 25 cents to make.)

That steep tab has put the drug’s lifesaving potential out of reach for some cancer patients, who have been forced into debt or simply stopped taking the drug. The price also helps fuel our ballooning insurance premiums.

For decades, I’ve reported on outrageous health care costs in the U.S. and the burden they place on patients. I’ve revealed the tactics used by drug companies to drive sales and keep the price of their products high.

Even with my experience, the cost of Revlimid stood out. When I started taking the drug, I’d look at the smooth, cylindrical capsule in my hand and consider the fact I was about to swallow something that costs about the same as a new iPhone. A month’s supply, which arrives in an ordinary, orange-tinged plastic bottle, is the same price as a new Nissan Versa.

I wanted to know how this drug came to cost so much — and why the price keeps going up. The price of Revlimid has been hiked 26 times since it launched. Some of what happened was reported at the time. But no one has pieced together the full account of what the drugmaker Celgene did, how federal regulators failed to rein it in and what the story reveals about unrestrained drug pricing in America.

What I discovered astonished even me.

My journey started with an indefatigable New York City lawyer on a quest to give her dying husband a chance.

Tiny and Terrifying

Beth Wolmer’s story begins on a moon-splashed beach in the Cayman Islands in the winter of 1995. She and her husband, Ira, were holding hands as they walked in the sand, enjoying a rare break from a hectic life as parents to a 1-year-old daughter and demanding jobs as 30-something professionals in New York City.

They had met through friends and clicked from the start. On Sunday mornings, they sat together for hours, sharing sections of the newspaper and eating bagels. They planned trips to Europe and outings to the Metropolitan Museum of Art.

Ira was an interventional cardiologist who followed his father into medicine. Beth was a lawyer at the high-powered firm Skadden Arps.

“We had a great life,” Beth told me. “I specifically remember coming home on the bus and thinking: ‘My life is just perfect, perfect. I’m not going to change a thing.’”

As they walked that night in the Caribbean, Ira felt a sharp pain in his cheekbone. The pain flared several more times during the trip, becoming so intense that it brought tears to his eyes.

When he got home, Ira made an appointment to figure out what was wrong. Imaging tests revealed multiple myeloma. The prognosis was grim. The couple was told Ira had two years to live.

Specialists recommended treatments that would only provide a brief reprieve. The couple searched for someone who could offer something more. That’s when they found Dr. Bart Barlogie in Little Rock, Arkansas.

I’ve never been more scared of a spouse of a patient than I was of her.

—Dr. David Siegel, who treated Ira Wolmer

Barlogie had been recruited to the University of Arkansas for Medical Sciences from the more prestigious MD Anderson Cancer Center in Houston. In Texas, Barlogie had been frustrated by a medical culture that he viewed as too timid in its approach to multiple myeloma.

He remembers working on a Sunday when a newly diagnosed patient was admitted to the hospital. With few options, Barlogie decided to put the patient on a taxing, four-drug chemotherapy cocktail used for lymphoma patients. It didn’t work. The patient died from a sepsis infection, a known complication of the treatment.

The attending physician later admonished him, Barlogie said, saying, “Bart, we have to learn to treat myeloma gently.” Barlogie said he thought to himself, “Fuck you.”

In Arkansas, Barlogie was in charge. He quickly developed a reputation as a practitioner willing to try anything to fight the fatal disease. Patients from around the world — including the actor Roy Scheider from the movie “Jaws” — flocked to his clinic.

Beth and Ira heard Barlogie before they saw him. The cowboy boots he’d taken to donning since his time in Houston clacked down the linoleum hallway floors. A short, slight man, Barlogie had a booming voice with a German accent. He wore leather jackets and round, red-framed glasses on his bald head.

When he strode into the exam room, he hugged Beth and Ira and told them they had come to the right place.

Now retired, Barlogie recalls being struck by Beth’s intensity. He said she told him “you must do something” to help Ira.

I met Barlogie at his home in Little Rock. We sat in his office, which is filled with photos of the red Ducati motorcycle he used to ride to work. An old license plate with the letters “MMCURED” sat on a shelf, reflecting his goal to find a cure for multiple myeloma.

When Beth and Ira found him, Barlogie told me, he had been having some success with a novel approach that put patients through two stem cell transplants a few months apart, which he called a tandem stem cell transplant. With a transplant, a patient is bombarded with high-dose chemotherapy to kill the cancerous plasma cells. The patient is then infused with healthy stem cells that travel to the bone marrow.

The intense chemotherapy can be grueling and poses a small risk of death.

Ira underwent three transplants. Each time, he relapsed. By the fall of 1997, after two years of treatment, Ira’s thick black hair was gone. He was losing weight. Then he had a stroke. His kidneys failed and required dialysis. He developed pneumonia and had to be intubated.

Beth was determined to keep him alive long enough for their toddler daughter to remember him. With a photograph of Ira smiling with their baby as motivation, she applied her lawyer’s tenacity to the case. She pored over medical journals and peppered oncologists with questions about why what they were trying wasn’t working or quizzing them about a promising study. When doctors told her there was nothing more they could do for her husband, she refused to accept it.

“She is a tiny person, but she is terrifying,” said Dr. David Siegel, part of the team that treated Ira in Arkansas. “I’ve never been more scared of a spouse of a patient than I was of her.” He meant it as a compliment.

By late fall in 1997, Ira was dying and Beth was desperate.

A researcher told her about the work of Dr. Judah Folkman, a surgeon and researcher at Boston Children’s Hospital. Folkman believed the growth of cancerous tumors could be stunted by starving them of a supply of new blood vessels.

“Thank You, God”

Folkman was a workaholic who, when he wasn’t in the operating room or the research lab, was traveling across the world to promote his novel theory of how to attack cancer. Peers had ridiculed his idea since he first proposed it in the 1970s. The prevailing belief at the time was that tumors didn’t need a new blood supply to grow.

A young researcher in his lab, an ophthalmologist named Robert D’Amato, was at work on the top question Folkman had posed. Could they come up with a drug, in pill form, that blocks the growth of new blood vessels?

Folkman has since died, but it wasn’t difficult for me to track down D’Amato. He still works at Boston Children’s Hospital, where he has his own lab and holds the Judah Folkman Chair in Surgery. Now in his early 60s, D’Amato has a youthful energy and speaks in a rapid, matter-of-fact clip.

D’Amato told me that he had set out to find existing drugs that block blood vessel growth. He started by thinking of his own body and side effects caused by certain drugs. A drug that causes hair loss might be the result of the blood supply to hair follicles being shut off, for example. But this exercise wasn’t producing any viable candidates.

After giving it some thought, D’Amato realized he had myopically narrowed his search. What about a woman’s body? There were drugs that stopped menstrual cycles. Then there were drugs that caused birth defects in pregnant women. In both of those cases, it was possible the drug was inhibiting blood vessel growth. He came up with a list of 10 drugs. At the top of the list was one with a devastating history: thalidomide.

Beginning in the 1950s, pregnant women in Europe, Australia and other countries were frequently prescribed thalidomide as a treatment for morning sickness and to help them sleep. The drug was thought to be harmless and in Germany was sold over the counter. An advertisement for thalidomide in the United Kingdom claimed it could “be given with complete safety to pregnant women and nursing mothers without adverse effect on mother or child.”

They were wrong.

The drug was eventually linked to birth defects in more than 10,000 babies. Those babies were born without limbs or with shortened limbs, malformed hands, disfigured faces and damage to internal organs. Nearly half died within months of being born.

By the early 1960s, the drug was widely banned, considered a shameful chapter in the history of pharmaceuticals. It was never sold in the U.S. thanks to the unwavering objections of a resolute reviewer at the FDA named Frances Oldham Kelsey. The close call, however, prompted Congress to require more rigorous safety and efficacy data from drug manufacturers and empower the FDA to monitor the industry more closely.

D’Amato theorized that the thalidomide birth defects were the result of the drug stopping the growth of new blood vessels that the fetus needs to develop. He walked me through his experiments: He cracked a fertilized chicken egg on a glass petri dish and placed thalidomide on the surface. After two days, if no blood vessels grow on the embryo, a halo should appear around the thalidomide sample, showing the drug worked. It didn’t.

Folkman told D’Amato to move on. But D’Amato couldn’t shake the disappointing results. He did more research and realized thalidomide needs to first be broken down in the body to have an effect on humans. He purchased metabolites of thalidomide, repeated the test and this time found a halo around the sample.

He kept experimenting and in 1994 published a paper finding that thalidomide had “clear implications” for treating tumors.

So when Beth called three years later, Folkman told her they should try it.

Barlogie told me he didn’t think it would work. Beth said she had to convince him to try it.

Barlogie agreed to test it on Ira and two other patients who were out of treatment options in early December.

I wanted him alive forever.

—Beth Wolmer

The drug did not work for Ira. Beth said just before he died, Ira sat up in bed, kissed her and smiled. It was March 10, 1998. He was 38.

After years of frantically searching for anything that would help, the finality of his death was difficult to accept, she said. “I wanted him alive forever.”

It is unclear what happened with the second patient. The third patient, however, started to get better.

His name was Jimmy. Little more is known about him except that he was a patient of another oncologist at the hospital, Dr. Seema Singhal, and near death before he started the drug. “I told him it might work, but at the very least it would help him sleep,” Singhal said. Shortly after Jimmy took his first dose of thalidomide, Singhal left for a vacation.

Dr. Bart Barlogie and Dr. Seema Singhal (Painting by James Lee Chiahan for ProPublica)

When she returned two weeks later, her mailbox was full of lab results for Jimmy. He was still alive. She sat down to double-check the results, which showed declining amounts of a cancer marker. “For 30 minutes, I was the only person in the world who knew this worked,” she said.

Singhal walked down to Barlogie’s office to give him the news. “He took me by the hand, opened a window and shouted, ‘Thank you, God,’” she said.

“Violent Arguments”

Word of Jimmy’s stunning recovery in Arkansas quickly made its way to the offices of Celgene Corp., located in a small corporate park in a rural patch of northern New Jersey.

The company had just wrapped up a brutal year-end accounting, which showed losses of $27 million on revenue of just $1.1 million. Money was so tight that executives engaged in what one of them called “violent arguments” over whether to charge employees for coffee.

Celgene had acquired the rights to thalidomide patents held by researchers at Rockefeller University in 1992. The company, which was new to pharmaceuticals, planned to use the experience of obtaining FDA approval for thalidomide to develop other drugs.

“It wasn’t meant to be a blockbuster,” said Sol Barer, who started at the company in 1987 and later became CEO.

When Celgene announced plans to develop the disgraced drug for new uses, the only analyst following the company on Wall Street dropped coverage and told Celgene officials they didn’t know what they were doing.

The company thought the largest market would be as a treatment for AIDS patients experiencing dangerous weight loss. To win approval of the drug, however, Celgene selected a use that was already in practice in parts of the world for a small group of patients.

In July 1998, the FDA approved thalidomide for the treatment of a painful complication of leprosy. It was a momentous decision, coming just a few decades after the drug caused so much harm.

The market for leprosy was tiny, but what happened with Jimmy in Arkansas changed everything for the company.

Blocked Exits

The Arkansas doctors had been busy since first testing thalidomide on Ira Wolmer, Jimmy and the other patient. They quickly got approval to conduct a larger experiment funded by a grant from the U.S. National Institutes of Health. Now, in December 1998, they were ready to share their initial findings at the annual meeting of the American Society of Hematology.

It had been three decades since a new therapy for multiple myeloma had been approved, and there was a buzz among the oncologists gathered in Miami Beach for the conference. So many doctors crowded into the room for the presentation that the fire marshal had to intervene several times to clear exit ways. Word had already spread among multiple myeloma specialists about Jimmy. Now, the assembled doctors wanted to know whether it had been a fluke or a discovery that would fundamentally change how they practiced.

Singhal was tasked with presenting the data. It was a big stage for the 32-year-old doctor, who had only been practicing in the U.S. for two years.

It completely changed the treatment landscape.

—Dr. Seema Singhal

The 89 patients in the study were high-risk cases who had undergone prior treatment. They were patients who, like Ira, had run out of options. Now, after thalidomide treatment, one-third had declines in myeloma activity.

Those were stunning numbers, unlike anything seen before in the treatment of multiple myeloma. When Singhal finished, the room erupted in applause.

“It completely changed the treatment landscape,” she said.

I wasn’t able to track down Jimmy, but I have a sense of how he might have felt when he realized the treatment was working.

After my initial emergency room visit, it took time to confirm my diagnosis and do some additional testing. While I waited, the pain worsened. Painkillers barely made a dent. All I could picture was this cancer eating away at my bones, doing more damage every day.

David Armstrong (Painting by James Lee Chiahan for ProPublica)

Some patients wait months for care. I was lucky enough to meet my oncologist within weeks. He had a script for Revlimid ready to go, part of a regimen of four drugs I would take as standard induction therapy, and I was able to start it within days.

The initial dose of Revlimid cost $18,255 for a month’s supply, and my insurance covered the cost.

Within a month, my blood tests showed a massive drop in a key cancer indicator.

My pain gradually subsided too. By the end of April, I wrote in my journal that the pain was a 3 or 4 instead of the usual 9 or 10. “It doesn’t hurt to get out of bed anymore,” I wrote.

A Piggy Bank

The discovery in Arkansas made thalidomide, which Celgene sold as Thalomid, an instant hit.

As a result, Celgene’s revenue increased nearly sevenfold to $26.2 million in the year after the Miami presentation. It sold its thalidomide pills for $7.50 each.

From those modest beginnings, Celgene took a slightly altered version of that pill and turned it into one of the bestselling and most expensive prescription drugs in history. Celgene’s success with Thalomid was the result of remarkable good fortune, a case where the heavy lifting of discovery and initial testing had already been done, by Beth Wolmer, D’Amato, Barlogie, Singhal and others.

The development of the drug that would become Revlimid took me deep into the confounding, sharp-elbowed world of drug patents, which ostensibly protect drugmakers, allowing them to recoup the massive investments they made in developing a new product. Celgene drew on patent law, a drug safety system and even patient assistance programs to guard the exclusivity of its prized drug and the massive revenue it generated.

Those tactics, detailed in reams of court filings, allowed Celgene to treat Revlimid like a piggy bank, tapping it whenever it wanted.

There was a common internal theme at Celgene that cancer patients were willing to pay almost any amount Celgene charged.

—David Schmidt, a former Celgene executive

Amid the early success of Thalomid, Celgene identified two potential threats: One was obvious. Thaldiomide caused birth defects, a looming risk that could result in it being pulled from the market.

The other was that Celgene held limited patents on the drug. Patents are exclusive legal rights to inventions, and researchers file them on nearly every aspect of drug development as soon as they can, locking up everything from specific sets of ingredients to the way the drug is used and administered. The more robust patents a company has, the longer it can potentially ward off competitors.

Thalidomide was an old drug and Celgene’s patents did not cover the active ingredient, leaving it open to competition. The patents it did have, covering items such as the optimal dosages and its use in treating particular diseases, were considered weaker and open to a court challenge. If Celgene could create a new version of thalidomide — ideally one that didn’t cause birth defects — the company could seek more and stronger patents that would extend beyond those of the original drug.

So researchers at Celgene tested analogs of thalidomide, which are drugs that have a similar effect but are different from the parent compound in minor ways, such as having one less oxygen atom. The analogs are also more potent than the original, meaning they can achieve a similar effect at lower doses.

Celgene was not alone in its efforts. D’Amato was also studying thalidomide analogs and filing patents on their use, which he and Boston Children’s Hospital licensed to a Celgene competitor, EntreMed Inc.

With dueling patents, the companies sued each other in 2002.

Celgene was newly flush with cash from rising sales of thalidomide. EntreMed, on the other hand, was burning through money as it focused most of its resources on developing other drugs discovered in Folkman’s lab.

In December of 2002, the companies settled.

Celgene agreed to pay Boston Children’s Hospital royalties from future sales of Revlimid. In exchange, the hospital and D’Amato licensed their patents of thalidomide analogs to Celgene. Celgene also agreed to pay EntreMed $27 million.

For Celgene, the fight with EntreMed was a valuable experience. It learned that competition can be neutralized.

The Rise of Revlimid

Celgene had kept the price of Thalomid low when it was initially intended for AIDS patients, CEO John Jackson told investors in 2004, as the company “didn’t want huge numbers of people demonstrating in front” of its office.

That wasn’t a problem with cancer patients. There was “plenty of room for very substantial increases” in the price of the drug now, Jackson told investors.

It is time for us to take Jimbo to the wood shed.

—A senior Celgene official discussing a doctor critical of Revlimid

Just two days earlier, Celgene had hiked the price of Thalomid to $47 a pill.

“There was a common internal theme at Celgene that cancer patients were willing to pay almost any amount Celgene charged,” wrote David Schmidt, a former national account manager at the company, in a whistleblower lawsuit he filed after his employment was terminated in 2008. The lawsuit was voluntarily dismissed by Schmidt. (Jackson didn’t respond to requests for comment; Schmidt declined to talk to me.)

When Celgene launched Revlimid in December of 2005, it set the initial price at $55,000 a year, or $218 a pill, which was about double what analysts expected.

Seven months later, when the FDA approved the drug for multiple myeloma, the price jumped to $70,560 a year, or $280 a pill.

The Price of Revlimid Has Increased 26 Times Since FDA Approval

Each dot indicates a new manufacturer list price per pill.

(Source: AnalySource)

The cost to manufacture each Revlimid pill, meanwhile, was 25 cents. I found a deposition marked “highly confidential” in which a top Celgene executive testified that the cost started at a quarter and never changed.

Even on Wall Street, which cheered higher pricing, the initial cost of Revlimid prompted concern among analysts who tracked the company that such aggressive maneuvering would cause insurers to push back. In the U.S., that is one of the only real checks on the price of prescription drugs.

That fear turned out to be unfounded, and Celgene would repeatedly test the bounds of how high it could go.

At the same time, Celgene worked to mute any criticism of Revlimid.

In 2005, Celgene received reports that Los Angeles oncologist Dr. James Berenson was “bashing” Revlimid in presentations sponsored by patient groups.

In one email, a senior company official said, “it is time for us to take Jimbo to the wood shed.” The company discussed a range of options for dealing with the doctor, from taking legal action to arranging a sit-down with Celgene’s chief executive.

Ultimately, the company appears to have decided on a friendlier course of action. Berenson became a frequent paid speaker and consultant for the company, with payments totaling at least $333,000, according to Celgene disclosures. Berenson declined to comment.

He wasn’t the only doctor the company befriended. Payment records show that between 2013 and 2018, Celgene paid doctors $11 million for speaking engagements and consulting work related to Revlimid. At one point, Celgene rented a suite at the Houston Astros baseball stadium to throw a party for the entire multiple myeloma department at the MD Anderson Cancer Center, according to court testimony. The center said it was unable to verify any of those details.

They remind me of an octopus with many, many tentacles, and at the end of each tentacle is a wad of cash.

—David Mitchell, president of Patients For Affordable Drugs

Celgene went on to spread its largess across the multiple myeloma world. It funded patient groups, sponsored medical meetings and contracted with prestigious academic medical centers.

“They remind me of an octopus with many, many tentacles, and at the end of each tentacle is a wad of cash,” said David Mitchell, a former Washington, D.C., communications executive who launched a nonprofit organization to fight for lower prices after he was diagnosed with multiple myeloma. “Everybody relies on the money.” Mitchell said his group, Patients For Affordable Drugs, does not accept donations from any entity that profits from the development or distribution of pharmaceuticals.

At the same time it showered doctors and patient groups with money, Celgene was shutting Beth Wolmer out. She told me that John Jackson, the CEO at the time, had promised her a paid board seat at the company as a way of compensating her for her role in the discovery before the company cut off communication.

Wolmer sued Celgene in federal court in 2009, seeking $300 million or more for alleged misappropriation of her idea and what she termed the “unjust enrichment” of Celgene.

Celgene said it never promised to compensate Wolmer. The company also suggested she greatly inflated her role in the discovery and, in any event, waited too long to take legal action.

In 2010, a judge granted Celgene’s motion for summary judgment in the case, agreeing that the statute of limitations had expired while at the same time expressing “admiration” for Wolmer’s “contribution to the struggle against this terrible disease.”

Ira and Beth Wolmer in the Cayman Islands (Painting by James Lee Chiahan for ProPublica)

Wolmer has remarried and changed her name to Jacobson. She remains disappointed about the way she was treated by Celgene. “There was no ambiguity about who found the purpose of this drug, and I’m thrilled that it’s helping so many people,” she said. “Why they treated me that way? I don’t know.”

The Generic Threat

After the FDA approved Revlimid in late 2005, it also granted Celgene something else: seven years of market exclusivity because the drug treats a rare disease. In those seven years, Celgene raised the price of the drug nine times, increasing the price per pill by 82% to $397 in 2012.

The company also fended off challengers by claiming its patents protected the drug from competition until 2027.

But by 2010 generic makers were already working on copies of the drug, preparing to challenge those patents and enter the market earlier. A government analysis has found that generics generally lower the price of brand name drugs by an average of 85% after just one year.

Celgene was well aware of the danger generics posed and warned in a 2012 financial filing that their entry into the market could have a “material adverse effect” on its finances. At that point, Revlimid sales made up 70% of the company’s revenue.

Celgene needed another move.

The drug still posed a risk of birth defects like the parent compound. In approving the drug, the FDA had mandated a strict safety program to control its prescription and distribution.

Celgene realized early on that this could also be a tool to thwart competition. An internal company presentation at the time noted that the safety program could make it “more difficult for generic companies to access” thalidomide for testing.

Generic drug makers are required by the FDA to test their version against the brand name drug, so they need to buy small amounts of Revlimid from the company.

By 2012, at least six generic makers had requested to purchase Revlimid for testing. In every case, Celgene refused.

Federal regulators took notice. The FDA had warned Celgene that it could not use the safety program “to block or delay approval” of generic competitors. Now, it appeared to be doing just that.

The Federal Trade Commission, which enforces antitrust laws, had been investigating Celgene for years and in June of 2012 notified the company it was poised to take action.

In a previously unreported letter, the FTC said that its staff had recommended filing a legal complaint against the company for refusing to sell to competitors, thereby keeping them out of the marketplace.

The commission’s patience is wearing thin.

—FTC official Richard Feinstein to a Celgene attorney

In its letter, the FTC noted that while Celgene refused to sell its drugs to potential competitors, it routinely provided Revlimid to other third parties around the world, including researchers and universities studying the drug.

Then, in August of 2012, the FDA directed Celgene to sell a small amount of Revlimid to a generic competitor.

With both federal agencies bearing down on Celgene, a closed-door meeting was held at FDA headquarters at the end of August. The FTC sent five lawyers, and 11 FDA staffers attended. Celgene showed up with a large contingent that included in-house lawyers and outside counsel.

Celgene started by denying it was using the safety program to block generics, according to minutes of the meeting. (The minutes were filed in a court case against Celgene, and it is unclear if they were prepared by the agencies or the company.) Citing the threat of birth defects, the company said that it had legitimate safety concerns about selling Revlimid to generic companies and that it needed to protect its investment in the drug.

Jane Axelrad, an associate director for the FDA, told Celgene that it was raising safety concerns because “the company does not want generics on the market,” according to the minutes. She declined to comment.

The meeting ended without a resolution. The FDA had no way of enforcing its directive to Celgene. The FTC staff, however, was still determined to act. The agency had spent more than two years investigating Celgene. It hired experts, deposed Celgene officials and obtained internal company documents.

The staff drafted a complaint alleging the company engaged in unfair actions to maintain a monopoly, hoping either that it would push the company to agree to sell to competitors to avoid legal action or that Celgene would be forced to do so by the courts, according to a person familiar with the agency’s stance.

“The commission’s patience is wearing thin,” FTC official Richard Feinstein wrote to the company’s lawyer in February 2013. “We have reached a point where the staff may be instructed in the very near future to commence litigation.” (Feinstein did not respond to emails seeking a comment.)

Celgene appeared to relent, telling the FTC that it would sell to generic makers, as long as the FDA approved their safety plan. In July, the FDA approved the safety protocols of generic maker Mylan.

Still, Celgene refused to sell.

Jon Leibowitz, who was the chairman of the FTC at the time, told me that Celgene’s promise to cooperate, even if it didn’t result in any sales to generic makers, lessened interest in the case among his fellow commissioners. Three of five commissioners need to vote in favor of commencing litigation. Now, in retrospect, he said that “if we knew then what we know now” about the delays, “we certainly would have brought a case.”

The agency would close its case in 2017 without taking any action.

With would-be generic competitors sidelined by Celgene’s refusal to sell drugs for testing, the company continued to raise the price of Revlimid.

They could raise their price any time they wanted to.

—Francis Brown, former Celgene sales executive

On a Saturday morning in early March of 2014, Celgene President Mark Alles sent an internal email complaining of disappointing first quarter Revlimid sales. Revenue from the star drug, which had surpassed $1 billion the previous quarter, was down by about 1% — or $11.4 million.

“I have to consider every legitimate opportunity available to us to improve our Q1 performance,” he wrote. But the only idea he proposed was a familiar one: raise the price of the drug.

Alles said he wanted a meeting the following Monday to discuss an immediate 4% price increase, followed by another increase of 3% at the beginning of September.

The company implemented those hikes, along with a third in December. It brought the price of Revlimid to $9,854 a month, or $469 a pill, and helped boost Revlimid sales for the year to $5 billion. Alles didn’t respond to my requests for comment.

“They could raise their price any time they wanted to,” said Francis Brown, a former sales executive at the company, in a 2015 deposition. I wasn’t able to reach Brown for comment.

Celgene found a solution to the generic threat when it struck a deal to settle a lawsuit brought by generic maker NATCO Pharma in 2015. NATCO could bring a generic to market, Celgene agreed, but not for seven more years — in March 2022. Even then, the generic would be limited to less than 10% of the total market for Revlimid in the first year, with gradual increases after that.

The deal set the bar for deals with other rivals for limited generic sales, and it ensured that unlimited generic competition — and lower prices — would not arrive until 2026.

The delayed entry of generics may have been bad news for patients and health care payors, but there was one constituency that was thrilled with the 2015 deal. Celgene’s stock jumped nearly 10% the day after it was announced.

“Ridiculous,” “Ugly” and “Killer”

Revlimid turned out to be a unicorn for Celgene, a drug whose financial success proved impossible to replicate.

In October of 2017, Celgene announced it was abandoning a once-promising effort to develop a drug for Crohn’s disease. Shares of Celgene declined by 11%.

As it had done so many times in the past, Celgene tapped Revlimid to try to mitigate the damage. The day it announced the failure of the Crohn’s drug, it quietly raised the price of Revlimid by 9%.

By the end of the year, Celgene had cumulatively raised the cost 20% to $662 a pill, the largest one-year increase in the drug’s history.

That made Revlimid the most expensive Medicare drug that year, with the government insurance program spending $3.3 billion to provide it to 37,459 patients.

At Celgene, the brash increases triggered rare internal dissent. Betty Swartz, the company’s vice president of U.S. market access, objected to the measures in a pricing meeting with the CEO, who at the time was Alles, and other top executives. She said her concerns were swiftly dismissed, according to a whistleblower lawsuit she filed and later dismissed.

“Why would you be afraid to take an increase on our products?” she said the CEO told her. “What could be the worst thing that happens … a tweet here or there and bad press for a bit.” Swartz declined to comment.

The price increases added to the burden faced by many patients. In online groups, patients use words like “ridiculous,” “ugly” and “killer” when talking about the financial pain they have experienced related to the high costs associated with Revlimid. Some have taken out mortgages, raided retirement funds or cut back on everyday expenses like groceries to pay for Revlimid. Others have found overseas suppliers who ship the drug for pennies on the dollar, although doctors caution there’s no way to guarantee quality. Some just decide not to take the drug.

By increasing the price of Revlimid, Celgene executives in several instances boosted their pay. That’s because bonuses were tied to meeting revenue and earnings targets. In some years, executives would not have hit those targets without the Revlimid price increases, a congressional investigation later found.

In total, Celgene paid a handful of top executives about a half-billion dollars in the 12 years after Revlimid was approved.

Robert Hugin, who worked as Celgene’s CEO and then executive chairman, received $51 million in total compensation from 2015 to 2017. Hugin retired in 2018 to launch an unsuccessful Senate bid.

Even sales reps earned more than $1 million a year and were rewarded with trips to resorts such as the Four Seasons in Maui. That pay is more than two times what the average oncologist earns.

I connected with Hugin just before Christmas while he was driving. He was ardent in his defense of the pricing of Revlimid. He told me the drug passes any cost-benefit analysis because of its impact on multiple myeloma patients like myself. “People recognize when you have a breakthrough therapy and you have an opportunity to deliver that, you want to deliver that across the world,” he said. “And I think Revlimid is an example of a product that ends up to be a global lifesaver because of what it did.”

Hugin told me that when Revlimid has unlimited generic competition, the price will be “cheaper than aspirin” and patients will benefit from that low price for many decades.

Celgene also cited the cost of developing drugs and its expansive research efforts as reasons for the high cost of Revlimid. Celgene said it spent $800 million to develop Revlimid and spent several hundred million more on additional trials to study the use of the drug in other cancers. Those combined figures represent about 2% to 3% of Revlimid sales through 2018.

The drug didn’t get any better. The cancer patients didn’t get any better. You just got better at making money. You just refined your skills at price gouging.

—Former Rep. Katie Porter, D-Calif.

By the end of 2018, Celgene’s stock was down 56% over the past 15 months amid development failures. Despite the raft of bad news, Alles’ total pay that year increased by $3 million to $16.2 million.

Celgene tried desperately to boost its flagging stock price by buying back $6 billion of its own shares that year.

Ultimately, the buyback was not enough. Just days into the new year in 2019, Celgene announced it had agreed to be acquired by Bristol Myers Squibb in a deal valued at $74 billion.

As part of a severance agreement, top Celgene executives stood to make millions once the deal closed. For Alles, that meant a potential estimated payday of $27.9 million.

In the fall of 2020, Alles appeared before the House Oversight Committee, which was investigating the high cost of prescription drugs. He said pricing decisions “reflected our commitment to patient access, the value of a medicine to patients and the health care system, the continuous effort to discover new medicines and new uses for existing medicines, and the need for financial flexibility.”

When it came time for questions, then-Rep. Katie Porter, D-Calif., quizzed Alles in rapid-fire style about Revlimid. Did the drug change as the price increased? Did it work faster? Were there fewer side effects? The drug was the same, Alles responded.

“So, to recap here,” Porter said. “The drug didn’t get any better. The cancer patients didn’t get any better. You just got better at making money. You just refined your skills at price gouging.”

The Drumbeat Continues

High prices have consequences beyond individual patients. While there have been tremendous advancements in the treatment of my disease, there is still no cure. The specter of relapse hovers over every blood test, every new ache or pain.

The day I learned I was in remission, in November 2023, was bittersweet. I wrote at the time that I didn’t get to ring a bell — the traditional sign that a cancer patient has finished treatment. Instead, my doctor explained the next step: “maintenance” treatment.

This includes not only continuing Revlimid, but making monthly visits to my cancer center to get a shot of a bone-strengthening drug, have another drug injected into my stomach and blood drawn for lab tests.

“The visit,” I wrote that day, “only reinforced the fact that I’m a patient, and I always will be.”

For most of us, cancer will return at some point after treatment. And for most patients, the drugs eventually stop working.

Revlimid can also be difficult to live with. Some patients quit the drug after developing severe gastrointestinal issues, infections or liver problems. The drug also poses an increased risk of stroke, heart attack and secondary cancers.

Those are the trade-offs for keeping multiple myeloma in check.

Meanwhile, the drumbeat of price increases continues under Bristol Myers Squibb, helping the company bring in $48 billion in revenue from Revlimid since it purchased Celgene. Bristol said its pricing “reflects the continued clinical benefit Revlimid brings to patients, along with other economic factors.” The company said it is “committed to achieving unfettered patient access to our medicines” and provides some financial support for eligible patients. “While BMS develops prices for its medicines, we do not determine what patients will pay out of pocket.”

Last July, the cost of my monthly Revlimid prescription increased by 7% to $19,660.

At the beginning of this year, my insurer switched me to generic Revlimid. I didn’t fight it, thinking it would result in a dramatic decrease in what ProPublica’s health plan pays for the drug.

It turns out it is not much of a savings: The generic costs $17,349 a month.

Alec Glassford contributed research.

This post was originally published on ProPublica.

by Jasmine Demers, Arizona Center for Investigative Reporting

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up for Dispatches, a newsletter that spotlights wrongdoing around the country, to receive our stories in your inbox every week.

Two years after Arizona officials revealed a $2.5 billion Medicaid fraud scheme that targeted Native Americans seeking treatment for addictions, the state has recovered just a fraction of the taxpayer funds lost to fraud.

The Arizona attorney general’s office is leading the criminal investigation into the network of behavioral health providers and sober living homes that from 2019 to 2023 exploited the American Indian Health Program to obtain inflated Medicaid payments. Investigators found fraudulent operators didn’t provide the services they’d billed for and sometimes allowed patients to continue the substance use for which they had sought treatment.

The state has so far indicted more than 100 individuals and recouped $125 million — or about 5% of the funds the state estimates it paid to bad actors.

Attorney General Kris Mayes said in a May 1 press conference that she hopes to retrieve “at least hundreds of millions” from fraudsters. But she warned that “it’s hard, because what happens is these … criminals get the money, they buy lavish homes, they buy multiple expensive cars, they hide the money offshore, they spend the money in ways that is unrecoverable.”

“My team is working day in and day out to seize those assets,” Mayes said.

The Arizona Health Care Cost Containment System struggled to rein in the rampant fraud under two governors, leaving more than 11,000 people vulnerable to the chaos that followed. Prior reporting by the Arizona Center for Investigative Reporting and ProPublica found that at least 40 Indigenous residents of sober living homes and treatment facilities in the Phoenix area died as the state fumbled its response.

The damage also rippled out through the state’s behavioral health industry, which was nearly brought to a standstill when the agency suspended some 300 providers and enacted policies that halted or substantially delayed payments to those still operating. Those reforms included enhanced scrutiny when screening and reimbursing providers.

Gov. Katie Hobbs, a Democrat, recently signed legislation further increasing oversight of sober living homes by requiring the facilities to promptly report resident deaths. But advocates like Reva Stewart, a Diné activist who has helped Indigenous victims of the scheme through her group Stolen People Stolen Benefits, don’t think the state has done enough.

“I feel like I’m on a hamster wheel, and we’re still at the beginning,” Stewart said. “They have a lot of indictments and people being charged, but at the same time … they’re just getting a slap on the wrist.”

The U.S. Department of Justice has also indicted several individuals and is conducting parallel investigations into the fraudulent billing schemes under federal statutes.

Yet despite these state and federal efforts, it’s likely that most of the stolen taxpayer money won’t be recovered.

From 2019 to 2023, the Arizona Health Care Cost Containment System allowed about 13,000 unlicensed providers to enter its system, including some that exploited weak oversight by overbilling or charging for services that were never delivered.

The agency also didn’t act decisively when solutions to stem the fraud were proposed internally. It initially yielded to pressure from special interest groups connected to the behavioral health industry, which argued that reforms to the fee-for-service American Indian Health plan would threaten their financial interests.

Now, AHCCCS says its efforts to unravel the crisis could take many years, describing its investigation as a “highly complex and manual process.”

Officials must review improper payments, whether they were obtained by fraud or not, on a case-by-case basis. Though providers are required to repay AHCCCS as soon as they become aware of overpayments, they often cannot do so in one lump sum. Repayments may occur over months or years.

Because state Medicaid agencies receive much of their funding from the federal government, improper payments come with added financial consequences: States must repay the federal government for its share.

In Arizona, the federal government covered 70% to 76% of Medicaid costs between 2019 and 2023. The rate was even higher for people who received services through the American Indian Health Program.

AHCCCS has repaid $49.1 million to the federal government since January 2023, according to spokesperson Havona Horsefield, who has since left the agency. That amount will likely grow as AHCCCS continues to review fraudulent cases.

The agency is not, however, required to reimburse the federal government for overpayments made to facilities that are now bankrupt or out of business. Of the 322 providers suspended on suspicion of fraud, 90 have closed, according to AHCCCS.

The agency could not provide an estimate of how much those providers were overpaid, but said it notifies the attorney general when a provider goes out of business and provides information to support criminal cases against them.

State Sen. Theresa Hatathlie, a Democrat from Coal Mine Mesa on the Navajo Nation, has been critical of the state’s response and continues to call for stricter regulation of sober living facilities. During a March floor vote, she expressed frustration over the reforms Hobbs later signed into law, contending they did not go far enough.

“It’s time to stop protecting bad actors or even those people who continue to allow bad actors to keep coming back,” she said.

As the state slowly works to untangle the fraud and recover taxpayer funds, national debates over Medicaid’s future are intensifying. Republican majorities in both Arizona’s Legislature and Congress are pushing to cut Medicaid to offset President Donald Trump’s proposed tax cuts. Among their justifications are fraud and abuse of the system.

Health policy experts, however, say that most Medicaid spending pays for legitimate care, and that fraud is typically committed by a small number of providers — not patients.

Instead of the current system where the federal government covers a larger share of Medicaid costs in lower-income states, conservatives are advocating to cap Medicaid funding tied to inflation, a model that would shift more of the cost to state budgets.

Arizona is one of nine states where such a change could trigger the end of Medicaid expansion, which currently insures 648,000 low-income residents, or about 30% of AHCCCS recipients.

Despite Medicaid’s uncertain future, Arizona officials are pressing forward with efforts to address the lasting damage the fraud scandal inflicted on tribal communities. In November, Mayes announced a $6 million grant initiative offering up to $500,000 per organization to fund victim compensation and housing support for those displaced or otherwise affected by fraudulent treatment centers. Recipients include tribal nations and Native health organizations.

But Stewart says the state’s work is far from over, and many of those harmed have yet to see real accountability or support.

“They call it a travesty … and they want to get justice,” she said. “But where’s the justice when it comes to the amount of deaths that we have, the amount of Native relatives that are still missing?”

Christopher Lomahquahu, a Roy W. Howard fellow at the Arizona Center for Investigative Reporting, contributed reporting.

This post was originally published on ProPublica.

by Mary Hudetz

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up for Dispatches, a newsletter that spotlights wrongdoing around the country, to receive our stories in your inbox every week.

The director of Arizona’s embattled Medicaid agency resigned this week, just as she was expected to face questions from lawmakers about her handling of a massive fraud scheme that largely targeted Native Americans.

Gov. Katie Hobbs, a Democrat, announced Wednesday that she had accepted the resignation of Carmen Heredia, director of the Arizona Health Care Cost Containment System. The governor lauded Heredia’s leadership of the agency while blaming Republican lawmakers for politicizing the confirmation process, saying it had become clear they would not confirm Heredia’s nomination.

Sen. Jake Hoffman, a Republican and chair of the Senate’s Committee on Director Nominations, said in a statement that in responding to the fraud scheme, Heredia had “poorly executed” the suspensions of hundreds of behavioral health providers. Heredia had served as the head of AHCCCS without Senate confirmation since early 2023, several years after officials say the fraud likely began during the Republican administration of former Gov. Doug Ducey. In the year before Heredia became director, records show that officials were warned that the fraud was harming patients, but they struggled to respond and failed to alert the public, which Heredia did along with other state leaders in May 2023.

(Earlier this year, a spokesperson for Ducey did not comment on missed opportunities to stop the fraud but said that the former governor went to great lengths to assist in Hobbs’ transition.)

Under Heredia’s leadership, AHCCCS withheld payment to more than 300 businesses as the agency investigated allegations that they were fraudulently billing Medicaid for treatment services. Often, the services had not been provided, and business owners were accused of allowing patients to continue the substance use they had hoped to overcome through treatment.

In a statement, Heredia said she submitted her resignation with a heavy heart and expressed concern that a partisan agenda had resulted in professionals being dragged “through career damaging hearings.” Two years ago, Senate Republicans derailed the nomination of one of Hobbs’ previous picks to lead the health department.

Last September, more than a year after the crackdown began, the Arizona Center for Investigative Reporting and ProPublica reported that the suspensions had rendered patients homeless. Victims of the scheme, some from other states, were also left without access to the drug and alcohol treatment they were seeking.

Over several years, businesses across much of Arizona, but mostly in Phoenix, reaped huge Medicaid reimbursements by enrolling Native Americans in their programs and billing the state’s American Indian Health Program at exorbitant rates for services, like counseling sessions. (The AIHP is a Medicaid insurance option that, until the fraud was discovered, had no set limit on the amount of money providers could bill for services.)

At a news conference Thursday, Attorney General Kris Mayes, a Democrat, said there had been more than 100 indictments and 25 convictions so far related to the scheme. She also said she expected more indictments to come.

AHCCCS said over the past two years that officials’ top priority was patient safety, and in May 2023, the agency set up a hotline for victims. It provided brief hotel stays for people displaced from shuttered facilities. However, AHCCCS said last year that it had no record of what happened to a majority of the hotline’s then 11,400 callers, largely because after six months it had stopped tracking outcomes for people who did not stay in a hotel. According to available data, more than 575 people ended up without housing as of last September. AZCIR and ProPublica also found that at least 40 Indigenous residents of sober living homes and treatment facilities in the Phoenix area died as the state fumbled its response.

A handful of the suspended providers, out of hundreds investigated, were allowed to resume billing Medicaid after clearing allegations with the state. But they said the suspensions still pushed them to the brink financially and upended their patients’ care, AZCIR and ProPublica found. As a result, Heredia’s swift and aggressive response to the crisis — which authorities said was needed to root out fraud and save lives — caused concerns that behavioral health care, especially for Native Americans, was increasingly difficult to access.

“Under Katie Hobbs’ leadership, Heredia’s response has been incredibly disturbing, to say the least,” Hoffman said. “We are left with a broken system due to Heredia’s mismanagement, and our vulnerable populations are caught up in this collapse.”

A spokesperson for Senate Republicans declined a request for an interview with Hoffman.

While Hoffman’s statement mostly focused on the fraud scheme that authorities say cost the state $2 billion, he said he also took issue with other matters within AHCCCS involving long-term care.

In addition to Heredia’s resignation, Jennifer Cunico, the director of the Arizona Department of Health Services, also stepped down this week. Like Heredia, Cunico was set to appear before lawmakers for a confirmation hearing. Cunico said she was proud of her work at the department but made the difficult decision to withdraw her nomination after it became clear she wouldn’t be confirmed either. Her resignation comes two years after Hobbs’ previous pick to lead the health department withdrew her nomination following a heated confirmation hearing.

Hoffman said Cunico had defended public health officials’ pandemic response during meetings with lawmakers but did not provide details. Hoffman previously sponsored legislation that prohibited state and local agencies from enacting vaccine mandates.

The governor defended Heredia’s response to the fraud crisis and said both Heredia and Cunico had worked on a range of initiatives, including improving access to maternal health care.

“Carmen Heredia helped root out a multi-billion dollar wave of Medicaid fraud and the related humanitarian fallout which the previous administration ignored,” Hobbs said in a statement. “Her work to eliminate waste, fraud, and abuse in our healthcare system is a model for the nation, and she always ensured people who needed help continued to get it.”

She added, “The Senate’s unprecedented politicization of the director confirmation process has ended the directorship of two healthcare professionals who have made our state government run more efficiently and more effectively.”

Christopher Lomahquahu, an investigative reporter and Roy W. Howard fellow for AZCIR, contributed reporting.

This post was originally published on ProPublica.

by Jessica Schreifels, The Salt Lake Tribune

This article was produced for ProPublica’s Local Reporting Network in partnership with The Salt Lake Tribune. Sign up for Dispatches to get stories like this one as soon as they are published.

Josh Dallin spends his workdays talking to Utahns who raise cattle and grow crops, and knew that many were in distress. Everyone from neighbors to fertilizer dealers to equipment suppliers were telling him they were worried that a farmer or rancher they knew was at risk of suicide.

Then in 2023, with money allocated by Congress, Dallin had new help to offer: As executive director of an agriculture center at Utah State University Extension, he had scores of $2,000 vouchers that Utahns working in agriculture could use to get free therapy.

Dallin feared no one in the typically stoical farming community would take him up on the federally funded offer. He was wrong.

Farmers and ranchers across Utah quickly accepted the money, which ran out in just four months — well before he expected — and his office had to start turning people away. It convinced Dallin of the deep need in the state’s agricultural communities, and people’s openness to getting help when cost is not a barrier. “I want you to know,” he recalled one voucher recipient telling him, “that this saved my life.”

“It was heartbreaking,” he said, to have to put “the brakes on the program.”

The money for the vouchers was part of a one-time $28 million allocation sent to states to help Americans producing food handle the extra stresses of the coronavirus pandemic. Any state that applied to the U.S. Department of Agriculture was awarded up to half a million dollars — which was used to hold trainings, start hotlines staffed by mental health workers and, like in Utah, provide therapy.

With that funding now mostly spent, leaders in some states have tapped state funds or leaned on private donors to ensure mental health support continues.

Josh Dallin helped run a program that used federal money to connect Utah farmers and ranchers to free therapy. (Trent Nelson/The Salt Lake Tribune)

Utah has not — and, at least according to one legislator, has no intention to do so.

Republican state Sen. Scott Sandall, a third-generation rancher and farmer who is the Executive Appropriations Committee vice chair, criticized Congress for creating a program with a one-time boost of money, saying that without ongoing funding it was destined to fail.

“The way they set it up,” he said, “was eventually to have it go away.”

The Salt Lake Tribune and ProPublica reached out to Gov. Spencer Cox — himself a farmer who has advocated for better mental health resources in the state. In 2022, he acknowledged in a Utah Farm Bureau article that poor mental health was a problem affecting the state’s farmers and said he hoped investments in rural mental health could better support the agriculture industry. His office did not respond to interview requests for this story.

If You or Someone You Know Needs Help

Although Utah does not currently have funds to pay for therapy for the agricultural industry, there is still support available.

You can dial 988 to reach the National Suicide Prevention Lifeline. If you live in Utah, it will route you to the Utah Crisis Line, which is staffed by certified crisis workers at the Huntsman Mental Health Institute. The call is free and confidential, and you can reach someone at any time of day.

Another hotline, 1-800-FARM-AID, has staffers who can talk with you about what you are going through and connect you to resources.

Utah State University Extension has other resources available as well. You can listen to its podcast, “AgWellness,” which organizers say is aimed at teaching you to open up about what concerns you and how to help others who feel stressed. There are also free online courses that can teach you how to find relief from stress, or learn what to say and how to help if you know someone else who is struggling.

Farmers in the United States are 3.5 times more likely to die by suicide than the general population, according to the National Rural Health Association. Utah’s suicide rate has consistently been among the nation’s highest, and farmers and ranchers struggle with the volatility that comes with working in the dry mountain region. They die by suicide at the third-highest rate by vocation in the state, according to state data, behind miners and construction workers.

Fluctuating market prices, unpredictable weather and a stigma that farmers should be “tough” and can handle their mental stress themselves were constant pressures described by more than a dozen people The Tribune and ProPublica interviewed — farmers and ranchers, their families and those who support mental health programs for them.

The American Farm Bureau has emphasized in recent news releases that the Trump administration’s shifts in policy around tariffs and federal grant funding have increased the uncertainty faced by America’s farming communities — a population that overwhelmingly backed President Donald Trump in the 2024 election, according to an analysis by the nonprofit newsroom Investigate Midwest.

Trump acknowledged in his March speech to Congress that tariffs in particular may bring “a little bit of an adjustment period” for America’s farmers but said that he believes they will ultimately help by reducing competition from producers in other countries.

President Donald Trump said during an address to Congress in March that he thinks new trade policies will benefit American farmers. (Win McNamee/Pool Photo via AP)

“Our farmers are going to have a field day right now,” Trump said. “So, to our farmers, have a lot of fun. I love you, too.”

Federal funding to support farmer mental health is tied up with ongoing debates over the Farm Bill, a sweeping package of legislation that Congress has been unable to move forward since it expired in 2023. The USDA said it will be ready to implement mental health programs if federal lawmakers appropriate more money for them.

Sandall, the state legislator, said he knows that the stress of working in an unpredictable industry like agriculture can cause anxiety and mental health challenges. But when he was presented with the data about the high suicide rates in Utah agricultural communities, he said he doesn’t think Utah lawmakers would be interested in funding a program intended to help one specific profession. There is “so much demand” for mental health support throughout the state, he said, adding that targeting certain professions would create a “battle for funding.”

“Whether they’re a mechanic,” he said, “or whether they’re a school teacher, or a doctor, or someone in agriculture, I just think it would be a little hard to start separating out and creating just mental health programs for individual industries.”

“We Carry the Burden”

Mitch Hancock, owner of NooSun Dairy in Corinne, Utah (Trent Nelson/The Salt Lake Tribune)

The stress of owning a dairy fell on Mitch Hancock’s shoulders overnight after his father-in-law died by suicide in 2014. Hancock’s father-in-law hadn’t shared with his family that he was in crisis.

Mental health, Hancock said, isn’t a topic discussed often among farmers. “I think we struggle in quiet.”

For Hancock, too, there was no time for him to grieve. It was early August, and there were still two more cuttings of alfalfa that needed to be made, another month of harvesting corn and the daily needs of milking cows.

He had been involved with the dairy because his father-in-law had been hoping to transition into retirement, Hancock said. Still, “I had never driven a tractor,” he said. “Never driven a semi in harvest, never driven a chopper. Never done any of that. So it was very much, ‘Well, let’s figure it out as we go.’”

That was more than a decade ago. Hancock and his wife have run NooSun Dairy since on 2,400 acres of land in Box Elder County, where the snow-capped Wasatch Mountains stretch to the east and the Great Salt Lake can be seen past acres of fields and homes looking west.

When he speaks, Hancock is taciturn and straightforward, a trained civil engineer who takes a pragmatic approach to running the dairy farm. But he has new insight now into what his father-in-law faced, he said, a weight far heavier than just having a successful business. He has employees who need these jobs and neighbors who count on him to buy their crops to feed his cows.

“We carry the burden to make sure that we can take care of all of those around us like we always have,” he said, “even in times of low milk prices.”

But being able to pay the dairy’s bills can be challenging, Hancock said, because the price he can sell at can fluctuate. Milk price regulations are set by a complex government process that can cause prices to change as often as daily. When prices are volatile, Hancock said, “it’s hard to look past the doomsday.”

NooSun Dairy (Trent Nelson/The Salt Lake Tribune)

Like fluctuating market prices, farmers face other elements of their work they can’t control: the price of fertilizers and equipment, how much it rains or whether animals get sick. And their workdays are long.

In addition, in Utah and the arid West, farmers and ranchers worry about water, said Craig Buttars, the outgoing Utah Department of Agriculture and Food commissioner. In one recent year when rainfall was particularly scarce, he recalled, ranchers scrambled to find enough feed and had to haul water to cattle — many of which graze on remote public lands.

“That just added another level of stress,” he said. “It seems like those things can just add on to one another. And at some point, producers, sometimes they just feel like, ‘Why am I doing this?’”

Some farmers have also felt villainized by the public for their water use, including by a recent study that suggested that farmers need to cut back or stop growing altogether in order to help stop the shrinking of Utah’s Great Salt Lake. This takes a toll, said Caroline Hargraves, the marketing director with the state agriculture department. “I can’t tell you how often I hear people say that farmers should just quit. Like we shouldn’t even grow our own food,” she said. “Just really demonizing anyone for their water use.”

Chris Chambers is an alfalfa and hay farmer in northern Utah who sells his crop to local cattle producers. He said it’s frustrating to read online comments posted in response to news articles about declining lake levels from people who think farmers should give up their water rights or stop farming.

“It’s your livelihood,” he said. “Water is the key, and we’ve got the senior priority rights to use the water from the state of Utah. And now we’re bad guys for doing it? We feel like we’re doing a good service for feeding people.”

In Rural Utah, Few Therapists and More Guns

In a state that has consistently higher rates of self-reported depression than the rest of the United States, residents in rural areas — where many farmers and ranchers live — face unique challenges in getting help. In the two counties that have the highest amount of farmland in the state, each has about one therapist for every 550 people, according to County Health Rankings, which pulls data from the National Provider Identification registry. (The national ratio is one therapist for every 300 people.)

Without that type of specialized care, doctors in rural areas often rely only on prescription medications, said Tiffany McConkie, a rancher in northeastern Utah who also works as a nurse at a clinic in the town of Altamont, in a three-room medical office decorated with photos of sun-drenched farm landscapes. It’s where people can go for general medical care in their own town in the Uintah Basin, a rural area known for its oil production and agriculture.

But if someone is seeking behavioral health treatment from that same medical system, Uintah Basin Healthcare, the only two therapists on staff work at a larger medical clinic that’s about 20 miles away, according to the health care system’s online provider list.

McConkie said some people hesitate to ask for mental health care, telling her that they are afraid of being medicated or that health care workers will call the police and they’ll be put into a “mental home.”

“And that’s not the case,” she said. “We just want to get them the help they need.”

Where rural Utah lacks easy access to therapists, there is also an abundance of firearms — and a higher suicide rate compared with urban areas, according to a 2018 Harvard study. That study found that the elevated suicide rate in rural Utah is not because people there attempt suicide more often but because they are using guns, which are more lethal than other methods.

“We all feel like we’re tough, right?” said Tiffany McConkie, a Utah rancher and a nurse. “I just feel like we still have that stigma that we can’t say that we’re struggling. We can’t go for help.” (Trent Nelson/The Salt Lake Tribune)

In the basin where McKonkie lives, the local state-run mental health clinic has responded to those statistics by focusing on gun safety, handing out gun locks and secure ammo boxes at gun shows. They also travel to oil fields to do suicide prevention trainings with workers, an effort to meet their most at-risk population — middle-aged men — where they are.

“It has required some creativity on our part,” said Catherine Jurado, who works at Northeastern Counseling Center, adding that being in a smaller rural area allows them better opportunities to create relationships. “Who else in the United States thinks, ‘I need to go to a beef expo to do suicide prevention?’”

Seeking a Way Forward

The shortfall in funding for farmer mental health has been going on for years. In 2008, Congress created the federal Farm and Ranch Stress Assistance Network but, for more than a decade, put no money into it. The network eventually was funded as part of the 2018 Farm Bill, but its annual $10 million covers the entire country across four regional offices and today generally does not support individual therapy.

Since the Farm Bill expired in September 2023, Congress has been unable to agree on a new legislative package, nor did it pass a proposed bill last year to give $5 million more in funding for the Farm and Ranch Stress Assistance Network. Right now, the network has continued to be funded through temporary extensions.

When the pandemic-era funding injected a new surge of money at the state level in 2021, Utah’s agriculture department and Utah State University Extension — the state’s land-grant university — jumped at the opportunity.

The two organizations used some of the money at first for an educational podcast and online stress courses. And in 2023, they paid for therapy for about 240 farmers and ranchers. There are about 33,000 producers in Utah, according to 2022 Census of Agriculture data, most of whom work other jobs besides farming, which makes up nearly 3% of the state’s economy. As is the case throughout the United States, most Utah farms are family-run.

Buttars, the Utah agriculture department commissioner, said he was surprised by how many people sought the therapy vouchers.

“It really did wake me up to the number of people we have in the state, in our agricultural community, that felt the need for this type of program,” he said.

Dallin, with Utah State, said health care providers reported that those using the vouchers were improving, and that they were receiving positive feedback from those who went to therapy. But the money ran out more than a year ago, and the program has been halted.

In the absence of federal funds, some states have locked in state funding or private donations to keep supporting their farmers.

In Michigan, a program offering free therapy and online stress courses has been in place for nearly a decade, according to Remington Rice with Michigan State University Extension. He said state agriculture leaders advocated for the program after seeing distress among dairy farmers.

“Agriculture is a pillar of society,” Rice said. “No farmers, no food. … And so we need to address an issue that threatens our food supply.”

More recently, he said, a private business — a company that makes cherry products — reached out to donate a portion of its sales to help pay for therapy.

In Washington, a private donor — from a farming family who lost someone to suicide — has provided funding for no-cost therapy sessions for farmers and ranchers, said Don McMoran, who works at Washington State University Extension and is the Western regional lead for the national Farm and Ranch Stress Assistance Network.

In Utah, those who ran the therapy voucher program have been hesitant to approach lawmakers for state support.

Hargraves, with the state’s agriculture department, said it can be tough to get state legislators to fund new programs. And Dallin said his office has shied away from approaching legislators because the money would be earmarked as part of the higher education budget due to its association with the university. Utah’s legislative leadership has cut $60 million in funding from the public higher education system this year — the biggest budget cut to schools here in at least a decade.

Since the therapy voucher program ended, USU Extension has continued to run awareness campaigns encouraging farmers to invest in their mental health care. And the Utah Department of Agriculture and Food has also introduced mental health workshops into some certifications and courses that farmers and ranchers enroll in.

Dallin said his office has also been working with the University of Utah — a health research university that runs its own hospital system — to try to collect survey data to prove the voucher program’s effectiveness as they try to drum up more money in the future. He said he hopes by partnering, they can lean on the other university’s medical expertise and designation as a health care system.

“I honestly believe,” he said, “that if the government or if some organization were to give us a million dollars a year, I think we could spend it.”

This post was originally published on ProPublica.

by Mary Hudetz

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Arizona Gov. Katie Hobbs has signed legislation increasing oversight of sober living homes, two years after state officials announced that a Medicaid fraud scheme had targeted Native Americans seeking drug and alcohol treatment.

The bill, sponsored by three Republicans, amends state law for the regulation and licensing of sober living homes. It places new demands on the Arizona Department of Health Services, though a lawmaker from the Navajo Nation expressed concern that the bill does not go far enough in addressing root causes of the fraud.

Hobbs’ office announced late Friday that the bill, expected to take effect in the fall, was among dozens she had signed into law. The governor did not explain her decision to sign the legislation but she has been vocal in her support of reforms over the past two years to help authorities “go after bad actors.”

The legislation’s passage comes after ProPublica and the Arizona Center for Investigative Reporting reported in January that former state Medicaid officials had failed for years to stem the $2 billion fraud scheme, despite repeated warnings. Starting around 2019, people were lured into substance abuse treatment programs and housed in sober living homes where operators often allowed patients to continue using drugs and alcohol, according to officials. Meanwhile, many providers excessively billed the state’s American Indian Health Program, Medicaid insurance available to tribal citizens, for treatment they did not deliver.

At least 40 people died in sober living homes from the spring of 2022 to the summer of 2024 as the crisis escalated, Maricopa County Medical Examiner records reviewed by the news organizations showed. Victims’ advocates say they are certain the scheme’s toll is far higher. In interviews, victims’ relatives told ProPublica and AZCIR that they had been left in the dark about the circumstances of their loved ones’ deaths, including not knowing the names or addresses of the facilities where their family members had been staying because no one had informed them.

“I believe that this bill will set standards,” Rep. Cesar Aguilar, a Democrat from Phoenix, said before voting for the measure. “It will force businesses to actually help the most vulnerable.”

The League of Arizona Cities and Towns, a nonprofit that lobbies on behalf of municipalities and that supported the measure, said in a news release that a noteworthy component of the bill includes “mandating timely reporting” to the Arizona Department of Health Services — in addition to family members and emergency contacts — when a resident dies, overdoses or suffers severe harm in a facility. The health department will also be required to notify local governments when new licenses are issued to operators of sober living homes, which the league said will “improve transparency and community awareness.”

Under the bill, the health department’s director will set standards and requirements for sober living homes to maintain a drug- and alcohol-free environment and promote health and addiction recovery. Health officials could revoke or suspend licenses depending on the severity of a violation or issue fines of up to $1,000 for each day that a violation goes unaddressed.

At a minimum, the health department will conduct annual inspections of facilities and report to lawmakers on the number of complaints received regarding licensed or unlicensed facilities and how many resulted in investigations or other enforcement actions.

The bill received bipartisan support. However, critics said it did not address additional factors that contributed to the fraud scheme: Many victims stayed in unlicensed facilities and, despite warnings, the Arizona Health Care Cost Containment System, the state’s Medicaid agency, was slow to grasp the scope of the fraud and stop it.

It wasn’t until May 2023 that AHCCCS and the governor, who took office that year, announced a sweeping investigation of hundreds of facilities and launched a hotline to help victims who were recruited into fraudulent programs or displaced after AHCCCS suspended payments to the businesses. The agency has since enacted a series of reforms in response to the fraud. In an interview last year, a deputy director for AHCCCS also acknowledged that the agency’s American Indian Health Program lacked safeguards for fraud.

Supporters of this year’s bill have touted support from tribes.

Reva Stewart, who is Diné and an advocate for victims of the scheme and their families, opposed the bill. She anticipates the measure will make it more burdensome for licensed facilities to help people seeking treatment, while failing to stop the unlicensed homes, where most of the harm was done. ProPublica and AZCIR found that officials’ botched response to the crisis resulted in Native Americans losing access to behavioral health services that were being provided to them.

Sen. Theresa Hatathlie, a Democrat from Coalmine Mesa on the Navajo Nation, was also critical of the legislation. She voted against it, noting that a bill she sponsored last session would have required more accountability not only from the health department related to its oversight of the homes but also from the Arizona Corporation Commission, where the businesses must be registered.

Hatathlie, whose niece died in one of the homes, said this year’s Republican sponsors of sober home legislation did not include her in their discussions.

“We’re actually not solving the problem,” she said during a Senate floor vote last month. “So to say it’s good enough now, when we still have people dying and getting lost in the system, is a disservice to human lives. These are my relatives. These are my family members.”

Sen. Frank Carroll, the bill’s lead sponsor, didn’t immediately respond to an email and phone calls requesting comment.

Maria Polletta, a senior reporter and associate editor at AZCIR, contributed reporting.

This post was originally published on ProPublica.

by Patricia Callahan

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Glenmark Pharmaceuticals has recalled two dozen generic medicines sold to American patients because the Indian factory that made them failed to comply with U.S. manufacturing standards and the Food and Drug Administration determined that the faulty drugs could harm people, federal records show.

In February, the FDA found problems with cleaning and testing at the plant in Madhya Pradesh, India, which was the subject of a ProPublica investigation last year. The current recalls, listed in an FDA enforcement report last week, cover a wide range of commonly prescribed medicines, including ones that treat epilepsy, diabetes, multiple sclerosis, heart disease and high blood pressure, among other ailments. ​​A full list of the recalled medications is available here.

The agency determined that the drugs could cause temporary or reversible harm and that the chance of more serious problems was remote. However, the FDA didn’t say what symptoms the flawed drugs could cause. ProPublica asked the FDA and Glenmark for more specifics, but neither responded.

Records show that Glenmark first alerted wholesalers about the recalls in a March 13 letter. That letter suggests that Glenmark pulled the drugs because of potential cross-contamination. Thomas Callaghan, Glenmark’s executive director of regulatory affairs for North America, wrote that 148 batches of the recalled medicines were made “in a shared facility” with two cholesterol-lowering drugs, ezetimibe and a combination of that drug and simvastatin.

That’s a concern because the chemical structure of ezetimibe contains what’s known as a beta-lactam ring. FDA safety experts pay attention to this because many beta-lactam drugs, particularly penicillin, can cause life-threatening allergies and hypersensitivity reactions. It’s the most commonly reported drug allergy in the U.S. Because of that danger, the FDA requires manufacturers to follow special precautions to prevent cross-contamination with drugs that contain a beta-lactam ring, even if they aren’t antibiotics.

The chemical structure of ezetimibe, Callaghan wrote to Glenmark’s wholesalers, shows it is unlikely to cause such hypersensitivity reactions. Nevertheless, Glenmark was recalling the drugs “based on risk assessment and out of an abundance of caution,” Callaghan wrote. He added, “This recall is being made with knowledge of the Food and Drug Administration.”

According to Callaghan’s letter, the potential problem dates back years. The executive wrote that Glenmark began shipping the drugs on Oct. 4, 2022.

In December, ProPublica revealed that the Glenmark factory was responsible for an outsized share of U.S. recalls for pills that didn’t dissolve properly and could harm people. At the time, the FDA hadn’t inspected the plant since before the COVID-19 pandemic, even though one of those recalls had been linked to deaths of American patients.

About two months after that investigation was published, FDA officials returned to the factory — the agency’s first inspection in five years. Inspectors discovered that Glenmark hadn’t properly cleaned equipment to prevent contamination of medicines with residues from other drugs. The federal investigators also noted that Glenmark routinely released some drugs to the U.S. market using test methods that hadn’t been adequately validated, according to the inspection report.

What’s more, when some Glenmark tests found problems with a drug, the company at times declared those results invalid and “retested with new samples to obtain passing results,” the inspection report said. “The batches were ultimately released to the US market.”

In their detailed report, the inspectors listed drugs shipped to U.S. customers who had been affected by the potential contamination and testing problems, but FDA censors redacted page after page, making it impossible to know which medicines may not be safe. An FDA attorney said the information was being withheld because it contained trade secrets or commercial information that was considered privileged or confidential.

ProPublica first asked Glenmark about that inspection on March 7 after obtaining the FDA report through the Freedom of Information Act. Glenmark alerted wholesalers about the recalls less than a week later, but the company and the FDA didn’t tell ProPublica.

Instead, a Glenmark spokesperson sent a statement saying the company was “committed to working diligently with the FDA to ensure compliance with manufacturing operations and quality systems.” And the FDA said it could discuss potential compliance matters only with the company involved.

The FDA first mentioned the recalls publicly in its April 8 enforcement report, which is like an electronic filing cabinet for recalls. The recalls do not appear on the FDA’s recalls website, which compiles press releases written by pharmaceutical companies.

ProPublica asked the FDA and Glenmark why they didn’t alert the public last month that these medicines had been recalled, but neither responded.

Glenmark is embroiled in a federal lawsuit that alleges recalled potassium chloride capsules made at its Madhya Pradesh factory caused the death of a 91-year-old Maine woman in June. The FDA had determined last year that more than 50 million of those recalled Glenmark extended-release capsules had the potential to kill U.S. patients because they didn’t dissolve correctly and could lead to a perilous spike in potassium. In court filings, Glenmark has denied responsibility for the woman’s death.

Since that potassium chloride recall, Glenmark has told federal regulators it has received reports of eight deaths in the U.S. of people who took the recalled capsules, FDA records show. Companies are required to file such reports so the agency can monitor drug safety. The FDA shares few details, though, so ProPublica was unable to independently verify what happened in each case. In general, the FDA says these adverse event reports reflect the opinions of the people who reported the harm and don’t prove that the drug caused it.

This post was originally published on ProPublica.

by Duaa Eldeib and Patricia Callahan, and photography by Sarahbeth Maney

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In the past six months, two babies in Louisiana have died of pertussis, the disease commonly known as whooping cough.

Washington state recently announced its first confirmed death from pertussis in more than a decade.

Idaho and South Dakota each reported a death this year, and Oregon last year reported two as well as its highest number of cases since 1950.

While much of the country is focused on the spiraling measles outbreak concentrated in the small, dusty towns of West Texas, cases of pertussis have skyrocketed by more than 1,500% nationwide since hitting a recent low in 2021 amid the COVID-19 pandemic. Deaths tied to the disease are also up, hitting 10 last year, compared with about two to four in previous years. Cases are on track to exceed that total this year.

Pertussis Cases Surged in 2024

Cases had been decreasing in the years before the COVID-19 outbreak and dropped further when schools were closed in response to the pandemic.

Source: Centers for Disease Control and Prevention. (Lucas Waldron/ProPublica)

Doctors, researchers and public health experts warn that the measles outbreak, which has grown to more than 600 cases, may just be the beginning. They say outbreaks of preventable diseases could get much worse with falling vaccination rates and the Trump administration slashing spending on the country’s public health infrastructure.

National rates for four major vaccines, which had held relatively steady in the years before the COVID-19 pandemic, have fallen significantly since, according to a ProPublica analysis of the most recent federal kindergarten vaccination data. Not only have vaccination rates for measles, mumps and rubella fallen, but federal data shows that so have those for pertussis, diphtheria, tetanus, hepatitis B and polio.

In addition, public health experts say that growing pockets of unvaccinated populations across the country place babies and young children in danger should there be a resurgence of these diseases.

Many medical authorities view measles, which is especially contagious, as the canary in the coal mine, but pertussis cases may also be a warning, albeit one that has attracted far less attention.

“This is not just measles,” said Dr. Adam Ratner, a pediatric infectious diseases doctor in New York City and author of the book “Booster Shots: The Urgent Lessons of Measles and the Uncertain Future of Children’s Health.” “It’s a bright-red warning light.”

At least 36 states have witnessed a drop in rates for at least one key vaccine from the 2013-14 to the 2023-24 school years. And half of states have seen an across-the-board decline in all four vaccination rates. Wisconsin, Utah and Alaska have experienced some of the most precipitous drops during that time, with declines of more than 10 percentage points in some cases.

“There is a direct correlation between vaccination rates and vaccine-preventable disease outbreak rates,” said a spokesperson for the Utah Department of Health and Human Services. “Decreases in vaccination rates will likely lead to more outbreaks of vaccine-preventable diseases in Utah.”

Measles Vaccination Rates in Most States Were Below Herd Immunity in 2023 Data is for school year 2013-14 through 2023-24. The CDC recommends a vaccination rate of at least 95% to achieve herd immunity, to help prevent outbreaks and to protect communities. Source: Centers for Disease Control and Prevention Vaccination Coverage and Exemptions among Kindergartners. (Lucas Waldron/ProPublica) Pertussis Vaccination Rates Decreased in Most States Between 2013 and 2023 Note: Decrease means that the rate in school year 2013-14 was higher than the rate in school year 2023-24. If no data was reported for 2013-14, data from the next earliest year was used. Source: Centers for Disease Control and Prevention Vaccination Coverage and Exemptions among Kindergartners. (Lucas Waldron/ProPublica)

But statewide figures alone don’t provide a full picture. Tucked inside each state are counties and communities with far lower vaccination rates that drive outbreaks.

For example, the whooping cough vaccination rate for kindergartners in Washington state in 2023-24 was 90.2%, slightly below the U.S. rate of 92.3%, federal data shows. But the statewide rate for children 19 to 35 months last year was 65.4%, according to state data. In four counties, that rate was in the 30% range. In one county, it was below 12%.

“My concern is that there is going to be a large outbreak of not just measles, but other vaccine-preventable diseases as well, that’s going to end up causing a lot of harm, and possibly deaths in children and young adults,” said Dr. Anna Durbin, a professor in the Department of International Health at the Johns Hopkins Bloomberg School of Public Health who has spent her career studying vaccines. “And it’s completely preventable.”

The dramatic cuts to public health funding and staffing could heighten the risk. And the elevation of Robert F. Kennedy Jr., a longtime vaccine critic, to the secretary of the federal Department of Health and Human Services, several experts said, has only compounded matters.

The Trump administration has eliminated 20,000 jobs at agencies within HHS, which includes the Centers for Disease Control and Prevention, the nation’s public health agency. And late last month, the administration also cut $11 billion from state and local public health agencies on the front lines of protecting Americans from outbreaks; the administration said the money was no longer necessary after the end of the pandemic.

Several city and county public health officials had to move quickly to lay off nurses, epidemiologists and disease inspectors. Some ceased vaccination clinics, halted wastewater surveillance programs and even terminated a contract with the courier service that transports specimens to state labs to test for infectious diseases. One Minnesota public health agency, which had provided 1,400 shots for children at clinics last year, immediately stopped those clinics when the directive arrived, court records show.

A federal judge temporarily barred HHS from enacting the cuts, but the ruling, which came more than a week after the grants were terminated, was too late for programs that had already been canceled and employees who had already been laid off. Lawyers for HHS have asked the judge to reconsider her decision in light of a recent Supreme Court ruling that allowed the Department of Education to terminate grants for teacher training while that case is being argued in lower courts. The judge in the HHS case has not yet ruled on the motion.

But in tiny storefronts and cozy homes, at school fairs and gas stations, many residents in West Texas, near where the measles outbreak has taken hold, appear unfazed.

“I don’t need a vaccine,” one man sitting on his porch said recently. “I don’t get sick.”

“It’s measles. It’s been around forever,” said a woman making her way to her car. “I don’t think it’s a big deal.”

When asked why they weren’t planning on vaccinating their baby, a husband walking alongside his wife who was 27 weeks pregnant simply said, “It’s God’s will.”

Seminole last month. Many residents in West Texas appear unfazed by the measles outbreak.

In word and deed, Kennedy has sown doubt about immunizations.

In response to the measles outbreak, Kennedy initially said in a column he wrote for Fox News that the decision to vaccinate is a “personal one.” HHS sent doses of vitamin A alongside vaccines to Texas, and Kennedy praised the use of cod liver oil. Only the vaccine prevents measles.

About a week later, in an interview on Fox News, while Kennedy encouraged vaccines, he said he was a “freedom of choice person.” At the same time, he emphasized the risks of the vaccine.

Only after the second measles death in Texas did Kennedy post on X, formerly known as Twitter, that the “most effective way to prevent the spread of measles is the MMR vaccine.”

But even that is not the unequivocal message that the head of HHS should be sending, said Ratner, the infectious diseases doctor in New York. It is, he said, a tepid recommendation at best.

“It gives the impression that these things are equivalent, that you can choose one or the other, and that is disingenuous,” he said. “We don’t have a treatment for measles. We have vitamin A, which we can give to kids with measles, that decreases but doesn’t eliminate the risk of severe outcomes. It doesn’t do anything for prevention of measles.”

In the past, Kennedy has been a fierce critic of the vaccine. In a foreword to a 2021 book on measles released by the nonprofit that he founded, Kennedy wrote, “Measles outbreaks have been fabricated to create fear that in turn forces government officials to ‘do something.’ They then inflict unnecessary and risky vaccines on millions of children for the sole purpose of fattening industry profits.”

A spokesperson for HHS said, “Secretary Kennedy is not anti-vaccine — he is pro-safety, pro-transparency and pro-accountability.” Kennedy, the spokesperson said, responded to the measles outbreak with “clear guidance that vaccines are the most effective way to prevent measles” and under his leadership, the CDC updated its pediatric patient management protocol for measles to include physician-administered vitamin A.

Kennedy, the spokesperson added, “is uniquely qualified to lead HHS at this pivotal moment.”

Late last month, leaders at the CDC ordered staff to bury a risk assessment that emphasized the need for vaccines in response to the measles outbreak — in spite of the fact the CDC has long promoted vaccinations as a cornerstone of public health. While a CDC spokesperson acknowledged that vaccines offer the best protection from measles, she also repeated a line Kennedy had used: “The decision to vaccinate is a personal one.”

Among the approximately 2,400 jobs eliminated at the CDC was a team in the Immunization Services Division that partnered with organizations to promote access to and confidence in vaccines in communities where coverage lagged.

The National Institutes of Health, which is also under HHS, recently ended funding for studies that examine vaccine hesitancy. In early April, researchers, the American Public Health Association and one of the largest unions in the country sued the NIH and its director, Jay Bhattacharya, along with HHS and Kennedy, alleging they terminated grants “without scientifically-valid explanation or cause.” The government hasn’t filed a response in the case.

The NIH cancellation notices stated that the agency’s policy was not to prioritize research that focuses on “gaining scientific knowledge on why individuals are hesitant to be vaccinated and/or explore ways to improve vaccine interest and commitment.”

“These grants are being canceled in the midst of an outbreak, a vaccine-preventable outbreak,” said Rupali Limaye, an associate professor at George Mason University who has spent the past decade studying vaccine hesitancy. “We need to better understand why people are not accepting vaccines now more than ever. This outbreak is still spreading.”

That vaccines prevent diseases is settled science. For decades, there was a societal understanding that getting vaccinated benefited not only the person who got the shot, but also the broader community, especially babies or people with weakened immune systems, like those in chemotherapy.

An investment in public health and a sustained, large-scale approach to vaccines is what helped the country declare the elimination of the measles in 2000, said Lori Tremmel Freeman, the CEO of the National Association of County and City Health Officials.

But she has watched both deteriorate over the last few months. Nearly every morning since notices of the federal funding cuts began going out to local public health agencies, she has woken up to texts from panicked public health workers. She has led daily calls with local health departments and sat in on multiple emergency board meetings.

Freeman has compiled a list of more than 100 direct consequences of the cuts, including one rural health department in the Midwest that can no longer carry out immunization services. That’s vital because there are no hospitals in the county and all public health duties fall to the health department.

“It’s relentless,” she said. “It feels like a barrage and assault on public health.”

Vaccines were available at the health department in Lubbock, Texas, last month.

More than 1,600 miles away from Washington, D.C., in Lubbock, Texas, the director of the city’s health department, Katherine Wells, sighed last week when she saw the most recent measles numbers. She would have to alert her staff to work late again.

“There’s a lot of cases,” she said, “and we continue to see more and more cases.”

She didn’t know it at the time, but that night would mark the state’s second measles death this year. An earlier death in February was the country’s first in a decade. Both children were not vaccinated.

Kennedy said he traveled to Gaines County to comfort the family who lost their 8-year-old daughter and while there met with the family of the 6-year-old girl who died in February.

He also visited with two local doctors he described as “extraordinary healers,” he said in his post on X. The men, he claimed, have “treated and healed some 300 measles-stricken Mennonite children” using aerosolized budesonide — typically used to prevent symptoms of asthma — and clarithromycin — an antibiotic. Medical experts said neither is an effective measles treatment.

State health officials have traced about two-thirds of the measles cases in Texas to Gaines County, which sits on the western edge of the state.

Seminole, one of the county’s only two incorporated towns, has emerged as the epicenter of the outbreak, with Tina Siemens acting as a community ambassador of sorts.

Seminole has become the center of the measles outbreak.

Siemens, a tall woman with glasses and a short blonde bob, runs a museum that combines the area’s Native American history and Mennonite community with traditional skills like calligraphy and canning fruit.

On a recent Tuesday, atop the museum’s dark coffee table, notes scrawled onto white paper listed the latest shipments of vitamin C and Alaskan cod liver oil.

The supplies, Siemens said, were for one of the local doctors who met with Kennedy.

As measles tears through the community, Siemens said families have to decide whether to get vaccinated.

“In America, we have a choice,” she said, echoing Kennedy’s messaging. “The cod liver oil that was flown in, the vitamin C that was flown in, was a great help.”

Tina Siemens

Dr. Philip Huang, director and health authority for the Dallas County Health and Human Services Department, is working to keep the measles outbreak from reaching his community, just five hours east of Seminole. He wrote letters to the public school superintendents and leaders of private schools that had large numbers of unvaccinated or undervaccinated students offering to set up mobile vaccine clinics for them.

“Overall, the rates can look OK,” he said, “but when you’ve got these pockets of unvaccinated, that’s where the vulnerability lies.”

Huang has had to lay off 11 full-time employees, 10 temporary workers and cancel more than 50 vaccine clinics following the HHS cuts. The systemic dismantling of the CDC and other federal health agencies, he said, will have a grave and lasting impact.

“This is setting us back decades,” Huang said. “Everyone should be extremely concerned about what’s going on.”

Across the country, pediatricians are petrified, said Dr. Susan Kressly, who serves as president of the American Academy of Pediatrics, the largest professional organization of pediatricians in the country.

“Many of us are losing sleep,” Kressly said. “If we lose that progress, children will pay the price.”

She’s carefully watching the spread of several vaccine-preventable diseases, including an increase in whooping cases that far outpace the typical peaks seen every few years. Although the whooping cough vaccine isn’t as effective as the ones for measles and protection wanes over time, the CDC says it remains the best way to prevent the disease.

Babies under the age of 1 are among the most at risk of severe complications from whooping cough, including slowed or stopped breathing and pneumonia, according to the CDC. About one-third of infants who get whooping cough end up in the hospital. Newborns are especially vulnerable because the CDC doesn’t recommend the first shot until two months. That’s why experts recommend pregnant mothers and anyone who will be around the baby to get vaccinated.

The number of whooping cough cases dropped significantly during the pandemic, but it exploded in recent years. In 2021, the CDC reported 2,116 cases; last year, there were 35,435.

The numbers this year appear set to eclipse 2024. So far in 2025, 7,111 cases have been reported, which is more than double this time last year. Cases tend to spike in the summer and fall, which adds to experts’ concern about high numbers so early in the year.

States on the Pacific Coast and in the Midwest have reported the most cases this year, with Washington leading the country with 742 cases so far, more than five times as many as at this time last year.

The Washington child who died of whooping cough had no underlying medical conditions, according to a spokesperson for the Spokane Regional Health District. The death was announced in February but occurred in November.

While Washington’s overall vaccination rate for whooping cough has remained relatively steady over the last decade at around 90%, pockets of low vaccination rates have allowed the disease to take root and put the wider community at risk, said Dr. Tao Sheng Kwan-Gett, a pediatrician and chief health officer of the Washington State Department of Health.

This is the time to strengthen the public health system, he said, to build trust in those areas and make it easier for children to get their routine vaccines.

“But instead, we’re seeing the exact opposite happen,” he said. “We’re weakening our public health system, and that will put us on a path towards more illness and shorter lives.”

Washington was one of 23 states and the District of Columbia that sued HHS and Kennedy following the $11 billion cuts, which rescinded approximately $118 million from the state. Doing so, the state said in court records, would impact 150 full-time employees and cause an immediate reduction in the agency’s ability to respond to outbreaks.

Washington’s Care-A-Van, a mobile health clinic that travels across the state to provide vaccinations, conduct blood pressure screenings and distribute opioid overdose kits, was a key element in the department’s vaccination efforts.

But that, too, has been diminished.

An alert on the department’s website cataloged the impact.

“Attention,” it began.

As a result of the unexpected decision to terminate grant funding, “all Care-A-Van operations have been paused indefinitely, including the cancellation of more than 104 upcoming clinics across the state.”

The department had anticipated providing approximately 2,000 childhood vaccines as part of that effort.

The frustration came through in Kwan-Gett’s voice. Many people think that federal cuts to public health mean shrinking the federal workforce, he said, but those clawbacks also get passed down to states and cities and counties. The less federal support that trickles down to the local level, the less protected communities will be.

“It really breaks my heart,” he said, “when I see children suffering from preventable diseases like whooping cough and measles when we have the tools to prevent them.”

Agnel Philip contributed data analysis.

This post was originally published on ProPublica.

by Jessica Schreifels, The Salt Lake Tribune

This article was produced for ProPublica’s Local Reporting Network in partnership with The Salt Lake Tribune. Sign up for Dispatches to get stories like this one as soon as they are published.

Utah legislators this session took aim at life coaches who harm their clients’ mental health, but the law that the governor signed Wednesday stops short of prescribing minimum standards or ethical guidelines for the burgeoning profession.

Anyone can call themselves a life coach, which, unlike being a mental health therapist, does not require any kind of education, training or license.

In Utah, one state agency found that dozens of life coaches are advertising their ability to treat mental health issues even though the vast majority are not trained or permitted to work as therapists. State licensors say they field an average of one complaint each month about life coaches.

The new law strengthens existing regulations that forbid anyone who isn’t a licensed therapist from treating mental health conditions. By clearly defining what only therapists are allowed to do, licensors can more readily cite and fine life coaches who treat mental health, according to state Sen. Mike McKell, the bill’s sponsor.

But the new law does not designate any money to immediately hire more investigators to probe potential problems.

An investigation last year by The Salt Lake Tribune and ProPublica showed that about a third of the 43 Utah therapists whose licenses had been revoked or denied since 2010, or who allowed their suspended licenses to expire, appear to have continued to work in the mental health field. Some rebranded as “life coaches.”

McKell said the new law targets life coaches who had lost their therapist licenses because the state deemed them unsafe to work with patients.

Utahns have struggled to get mental health help, largely due to a shortage of available therapists, according to a recent report from the Utah Behavioral Health Coalition.

In that gap, life coaching has emerged as an unregulated alternative, according to the Utah Office of Professional Licensure Review. At the request of lawmakers, the state office studied life coaching and whether it should be licensed, and found that Utah life coaches advertise using more than 100 titles, including “executive coach,” “relationship specialist” and “soul-sourced consultant,” according to a November 2024 report.

State researchers looked at online advertisements for roughly 220 Utah life coaches and concluded that about 40% may be offering therapy. These coaches say they specialize in addressing mental health struggles, the state found, with some claiming the ability to “conquer” their client’s mental health conditions.

As part of the review, the state office also surveyed Utah’s therapists in an effort to better understand potential risks associated with life coaches. Of the more than 3,500 who responded, a third said they have had at least one client tell them that they were harmed by a life coach.

The state report quoted one unnamed therapist who described treating patients who had hired life coaches: “All 5 reported life coaches had them ‘deep dive’ into their trauma, which sent them into an emotional spiral and then did not provide them with any skills to cope with the emotional distress. 4 of them ended up being hospitalized with severe suicidal ideation.”

Sarah Stroup, a licensed therapist who is on the legislative committee for the Utah Association for Marriage and Family Therapy, said the new law is a starting point “in ensuring that Utahns are receiving ethical care.”

“Our goal from the beginning was to advocate for guardrails to be put in place so that life coaches weren’t providing mental health treatment,” she said, “and therapists who had lost their license couldn’t continue practicing under the guise of life coaching.”

A High-Profile Case of Abuse

Mental health professionals and some lawmakers have pushed for more stringent oversight of life coaches in Utah in the wake of the high-profile 2023 conviction of Jodi Hildebrandt, who is in prison for abusing the children of her life coaching business partner.

Hildebrandt was a licensed clinical mental health counselor, but she had removed references to being a therapist from her website and instead marketed herself as a life coach in the years prior to her conviction. One of her former clients previously told The Tribune and ProPublica that Hildebrandt had said she became a life coach as a way to get around the ethical rules therapists are required to follow. (Hildebrandt’s attorney did not respond to requests for comment.)

Kevin Franke, the father of the children abused by Hildebrandt and his ex-wife, has advocated for more oversight of life coaches since the two women were sent to prison. He said he thinks there should be a state registry where the public can see whether a life coach has had complaints made against them or whether they were ever disciplined, and he hopes the state will eventually mandate standards for life coaches, including a code of ethics.

Kevin Franke, right, has called for more regulations governing life coaches after his ex-wife and their life coach were sent to prison for abusing two of his children.

(Francisco Kjolseth/The Salt Lake Tribune)

“I’m particularly concerned with life coaches who effectively impersonate a therapist or present themselves as some cheaper alternative to a licensed mental health professional,” he said.

While Utah legislators last year floated the idea of requiring life coaches to be licensed— something no other state in the country has done — the new law does not take that step. Utah’s Office of Professional Licensure Review found that licensing life coaches would be challenging given the wide-ranging services they offer and the ambiguity of the titles they use.

The new law, however, clarifies that only licensed therapists can present themselves as having the skills, experience and training to address mental illness and “emotional disorders.”

McKell, the Republican who sponsored the legislation, said that by better defining in state law what a therapist can do, he hopes that licensors can more easily penalize life coaches who harm their clients.

“Instead of trying to create regulation for life coaching, I am drawing this fence around mental health and what mental health professionals do at the exclusion of everyone else,” McKell said.

But some have questioned how effective the new law can be, given the small amount of money that is likely to be allocated to the effort.

The law creates an enforcement fund that will be collected from fines that the state’s licensing division issues to anyone who practices mental health therapy without a license. McKell said the fund signals to licensors that the Legislature wants them to take this issue seriously.

But previous reporting from The Tribune and ProPublica shows these types of citations are rare and unlikely to generate significant revenue: Over the last decade, the licensing department has cited just 25 people for “unauthorized practice” in the mental health field, according to a review of citations and other records. Those citations amounted to just over $10,000.

And last year, while licensors cited nearly 1,000 people, not a single new citation was given to anyone identified as working in the mental health field, according to a review of citations published monthly.

Melanie Hall, spokesperson for the Division of Professional Licensing, acknowledged that the law does not guarantee an influx of resources but said even a small amount of money could help fund social media campaigns to encourage the public to report bad behavior. If the fund grows larger, she said, that money could be used to conduct more investigations or pay for experts to weigh in on complex cases with high public harm.

At the same time, some Utah life coaches say the bill has already gone too far and could restrict their ability to help clients.

Heather Frazier, who advertises her expertise as a “parent-teen connection life coach,” said in a public hearing that restricting the treatment of “interpersonal dysfunction” to just therapists risks putting life coaches out of business. Life coaches can help struggling clients who don’t have a diagnosed mental illness learn how to better communicate with family members, she said.

“Without coaching, they will have to go to a therapist, which is already an overburdened, overworked part of our state,” Frazier said.