On the last Tuesday of July, Tres Biggs stepped into the courthouse in Coffeyville, Kansas, for medical debt collection day, a monthly ritual in this quiet city of 9,000, just over the Oklahoma border. He was one of 90 people who had been summoned, sued by the local hospital, or doctors, or an ambulance service over unpaid bills.
Some wore eye patches and bandages; others limped to their seats by the wood-paneled walls. Biggs, who is 41, had to take a day off from work to be there. He knew from experience that if he didn't show up, he could be put in jail.
Before the morning's hearing, he listened as defendants traded stories. One woman recalled how, at four months pregnant, she had reported a money order scam to her local sheriff's office only to discover that she had a warrant; she was arrested on the spot. A radiologist had sued her over a $230 bill, and she'd missed one hearing too many. Another woman said she watched, a decade ago, as a deputy came to the door for her diabetic aunt and took her to jail in her final years of life. Now here she was, dealing with her own debt, trying to head off the same fate.
Biggs, who is tall and broad-shouldered, with sun-scorched skin and bright hazel eyes, looked up as defendants talked, but he was embarrassed to say much. His court dates had begun after his son developed lymphoma, and they'd picked up when his wife started having seizures. He, too, had been arrested because of medical debt. It had happened more than once.
Judge David Casement entered the courtroom, a black robe swaying over his cowboy boots and silversmithed belt buckle. He is a cattle rancher who was appointed a magistrate judge, though he'd never taken a course in law. Judges don't need a law degree in Kansas, or many other states, to preside over cases like these. Casement asked the defendants to take an oath and confirmed that the newcomers confessed to their debt. A key purpose of the hearing, though, was for patients to face debt collectors. "They want to talk to you about trying to set up a payment plan, and after you talk with them, you are free to go," he told the debtors. Then, he left the room.
The first collector of the day was also the most notorious: Michael Hassenplug, a private attorney representing doctors and ambulance services. Every three months, Hassenplug called the same nonpaying defendants to court to list what they earned and what they owned — to testify, quite often, to their poverty. It gave him a sense of his options: to set up a payment plan, to garnish wages or bank accounts, to put a lien on a property. It was called a "debtor's exam."
If a debtor missed an exam, the judge typically issued a citation of contempt, a charge for disobeying an order of the court, which in this case was to appear. If the debtor missed a hearing on contempt, Hassenplug would ask the judge for a bench warrant. As long as the defendant had been properly served, the judge's answer was always yes. In practice, this system has made Hassenplug and other collectors the real arbiters of who gets arrested and who is shown mercy. If debtors can post bail, the judge almost always applies the money to the debt. Hassenplug, like any collector working on commission, gets a cut of the cash he brings in.
Across the country, thousands of people are jailed each year for failing to appear in court for unpaid bills, in arrangements set up much like this one. The practice spread in the wake of the recession as collectors found judges willing to use their broad powers of contempt to wield the threat of arrest. Judges have issued warrants for people who owe money to landlords and payday lenders, who never paid off furniture, or day care fees, or federal student loans. Some debtors who have been arrested owed as little as $28.
More than half of the debt in collections stems from medical care, which, unlike most other debt, is often taken on without a choice or an understanding of the costs. Since the Affordable Care Act of 2010, prices for medical services have ballooned; insurers have nearly tripled deductibles — the amount a person pays before their coverage kicks in — and raised premiums and copays, as well. As a result, tens of millions of people without adequate coverage are expected to pay larger portions of their rising bills.
The sickest patients are often the most indebted, and they're not exempt from arrest. In Indiana, a cancer patient was hauled away from home in her pajamas in front of her three children; too weak to climb the stairs to the women's area of the jail, she spent the night in a men's mental health unit where an inmate smeared feces on the wall. In Utah, a man who had ignored orders to appear over an unpaid ambulance bill told friends he would rather die than go to jail; the day he was arrested, he snuck poison into the cell and ended his life.
In jurisdictions with lax laws and willing judges, jail is the logical endpoint of a system that has automated the steps from high bills to debt to court, and that has given collectors power that is often unchecked. I spent several weeks this summer in Coffeyville, reviewing court files, talking to dozens of patients and interviewing those who had sued them. Though the district does not track how many of these cases end in arrest, I found more than 30 warrants issued against medical debt defendants. At least 11 people were jailed in the past year alone.
With hardly any oversight, even by the presiding judge, collection attorneys have turned this courtroom into a government-sanctioned shakedown of the uninsured and underinsured, where the leverage is the debtors' liberty.
Seated at the front of the courtroom, Hassenplug zipped open his leather binder and uncapped his fountain pen. He is stout, with a pinkish nose and a helmet of salt and pepper hair. His opening case this Tuesday involved 28-year-old Kenneth Maggard, who owed more than $2,000, including interest and court fees, for a 40-mile ambulance ride last year. Maggard had downed most of a bottle of Purple Power Industrial Strength Cleaner, along with some 3M Super Duty Rubbing Compound, "to end it all." His sister had called 911.
Maggard took his seat. He had cropped red hair, pouchy cheeks and mud-caked sneakers. "The welfare patients are the most demanding, difficult patients on God's earth," Hassenplug told me, with Maggard listening, before launching into his interrogation: Are you working? No. Are you on disability? He was diagnosed with schizoaffective disorder, bipolar type, and anxiety. Do you have a car? No. Anyone owe you money you can collect? I wish.
They had been here before, and they both knew Maggard's disability checks were protected from collections. Hassenplug set down his pen. "Between you and me," he asked, "you're never going to pay this bill, are you?"
"No, never," Maggard said. "If I had the money, I'd pay it."
Hassenplug replied, "Well, this will end when one of us dies."
Though debt collection filings are soaring in parts of America, Hassenplug speaks with pride about how he discovered their full potential in Coffeyville long before. A transplant from Kansas City, he was a self-dubbed "four-star fuck-up" who worked his way through law school. He moved to Coffeyville to practice in 1980 and soon earned a reputation as a hard ass. He saw that his firm, Becker, Hildreth, Eastman & Gossard, hadn't capitalized on its collections cases. The lawyers didn't demand sufficient payments, and they rarely followed up on litigation, he said. Where other attorneys saw petty work, Hassenplug saw opportunity.
Hassenplug started collecting for doctors, dentists and veterinarians, but also banks and lumber yards and cities. He recognized that medical providers weren't being compensated for their services, and he was maddened by a "welfare mentality," as he called it, that allowed patients to dodge bills. "Their attitude a lot of times is, 'I'm a single mom and … I'm disabled and,' and the 'and' means 'the rules don't apply to me.' I think the rules apply to everybody," he told me.
He logged his cases in a computer to track them. First with the firm and later in his own practice, he took debtors to court, and he won nearly every time; in about 90% of cases nationally, collectors automatically win when defendants don't appear or contest the case. Hassenplug didn't need to accept $10 monthly payments; he could ask for more, or, in some cases, even garnish a quarter of a debtor's wages. His fee was, and often still is, one-third of what he collects. He asked the court to summon defendants, over and over again. It was the judge's contempt authority that backed him, he said. "It's the only way you can get them into court."
The power of contempt was originally the power of kings. Under early English rule, monarchs were considered vicars of God, and disobeying them was equivalent to committing a sin. Over time, that contempt authority spread to English courts, and ultimately to American courts, which use it to encourage compliance with the judicial system. There is no law requiring that a court use civil contempt when an order isn't followed, but judges in the U.S. can choose to, whether it's to force a defendant to pay child support, for example, or show up at a hearing. A person jailed for defying a court order is generally released when they comply.
When Casement took the bench in 1987, after passing a self-study exam, he didn't know much legalese — he had never been in a courtroom. But attorneys taught him early on that the power of contempt was available to him to punish people who ignored his orders. At first, Casement could see himself in the defendants. "I was a much more pro-debtor aligned judge, much more sympathetic, much less inclined to do anything that I thought would burden them," he told me. "And over the years, I've gradually moved to the other side of the fulcrum. I still consider myself very much in the middle, and I don't know if I am or not."
Once a bustling industrial hub, Coffeyville has a poverty rate that is double the national average, and its county ranks among the least healthy in Kansas. Its red-bricked downtown is lined with empty storefronts — former department stores, restaurants and shops. Its signature hotel is now used for low-income housing. "The two growth industries in Coffeyville," Hassenplug likes to say, "are health care and funerals."
Coffeyville Regional Medical Center is the only hospital within a 40-mile radius, and it reported $1.5 million in uncollectible patient debt in 2017. A nonprofit run in a city-owned building, the hospital accounts for the vast majority of medical debt lawsuits in the county — about 2,000 in the past five years. It also accounts for the majority of related warrants. Account Recovery Specialists Inc. handles its collections, and it does so for hospitals in most Kansas counties. Though the hospitals can direct ARSI and its contracted attorneys to tell judges not to issue warrants, hardly any have. The Coffeyville hospital's attorney, Doug Bell, said that its only motivation is to continue to serve the area, and that Kansas' decision to not expand Medicaid under the Affordable Care Act has had a "dramatic effect on the economic liability of small rural hospitals."
Three nearby hospitals in this rural region have closed in the past several years, meaning ambulances make more trips. A half-hour from Coffeyville, Independence runs its ambulance service at about a $300,000 annual loss. Its bills were at the root of four arrests this year alone. Derek Dustman, who is 36 and works odd jobs, had been driving a four-wheeler when he was hit by a car and rushed to the hospital. Though he was sued for not paying his $818 ambulance bill, he didn't have a license to drive to the courthouse. This spring, he spent two nights in jail. "I never in a million years thought that this would end with jail time," he told me.
For years, Hassenplug has requested that the judge issue warrants on the ambulance service's behalf. When I asked Lacey Lies, the city's director of finance, if she ever considered telling him not to resort to bench warrants, she was puzzled. "You're saying an attorney with no teeth?"
The first time Tres Biggs was arrested, in 2008, he was dove hunting in a grove outside Coffeyville. It had been just a year since his 6-year-old son Lane was diagnosed with lymphoma, and Biggs watched him breathe in the fresh air, seated on a haybale under an orange sky. When a game warden came through to check hunting permits, Biggs' friends scattered and hid. He wasn't the running type, and he took Lane by the hand. The warden ran Biggs' license. There was a warrant out for his arrest. Biggs asked a friend to take Lane home and crouched into the warden's truck, scouring his memory for some misstep.
The last few years had been a blur. His wife, Heather, had quit her job as a babysitter to care for their son. Then, she got sick. Some days, she passed out or felt so dizzy she couldn't leave her bed. Her doctors didn't know if the attacks were linked to her heart condition, in which blood flowed backward through a valve. To provide for his wife, son and two other kids, Biggs worked two jobs, at a lumber yard and on construction sites. He didn't know when he would have had time to commit a crime. He'd never been to jail. As he stared out the window at the rolling hills, his face began to sweat. He felt his skin tighten around him and wondered if he would be sick.
The warrant, he learned at the jailhouse, was for failure to appear in court for an unpaid hospital bill. Coffeyville Regional Medical Center had sued him in 2006 for $2,146, after one of Heather's emergency visits; neither of his jobs offered health insurance. In the shuffle of 70-hour workweeks and Lane's radiation, he had missed two consecutive court dates. He was fingerprinted, photographed, made to strip and told to brace himself for a tub of delousing liquid. His bail was set at $500 cash; he had about $50 to his name.
His friend bailed him out the next morning, but at the bond hearing, the judge granted the $500, minus court fees, to the hospital. Biggs compensated his friend with a motorboat that a client had given him in exchange for a hunting dog. But it wasn't long before the family received a new summons. In 2009, a radiologist represented by Hassenplug sued them for $380.
Some court hearings fell on days when Lane had treatment, at a hospital in Tulsa, an hour south. Heather refused to postpone his care. Lane's condition was improving — in a year, he would be cancer-free — and his dirty blond hair was sprouting again. Her health, though, had taken a turn. She began having weekly seizures, waking up on the floor, confused about where their Christmas tree had gone or why a red Catahoula puppy was skidding around their ranch house. Her doctors concluded she had Lyme disease, which was affecting her nervous system and wiping her short-term memory. Each time she woke up, she repeated: "Don't take me to the hospital."
Biggs was still on the hook for the bill that had landed him in jail; bail had covered only part of it, and the rest was growing with 12% annual interest. The hospital had garnished his wages, and the radiologist had garnished his bank account, seizing contributions that his family had raised for Lane's care. Living on $25,000 a year, Biggs couldn't afford to buy insurance. His family was on food stamps but didn't qualify for Medicaid, a federal insurance program for people in poverty. Other states were about to expand it to cover the working poor, but not Kansas, which limited it, for families of his size, to those who earned under $12,000. Like millions of others across America, he and Heather fell into a coverage gap.
By 2012, the Biggs family had accrued more than $70,000 in medical debt, which it owed to Coffeyville Regional Medical Center and other hospitals, pediatricians and neurologists. Some forgave it; others set up lenient payment plans. Coffeyville's was the only hospital that sued. The doctors who took them to court were represented by Hassenplug.
Biggs began to panic around police, haunted by the fear that at any moment, he might be locked up. That spring, outside the Woodshed gas station, he spotted a sheriff's deputy who was also an old friend. To shake off his dread, he asked the friend to run his license. The deputy found another warrant, signed by Casement, involving the $380 radiologist's bill. "You're not really going to take me in, right?" Biggs remembers asking. The deputy said he had no choice. Bail, as usual, was set at $500.
The family filed for bankruptcy, a short-term fix that erased their debt but burdened them with legal fees. They lost their home and started renting. Biggs ultimately got a job that offered insurance, as a rancher, covered by Blue Cross Blue Shield. But it required Biggs to pay the first $5,000 before it covered medical expenses. When chest pain hit him as he worked cattle in the heat, and he began vomiting, the only nearby hospital was Coffeyville's. In 2017, the hospital sued again. It was the family's sixth lawsuit for medical debt.
Sitting in Casement's courtroom this July, Biggs calculated that he was losing about $120 by taking time off from work to attend this hearing. "I haven't received a bill," he told me, slouched over his turquoise shorts. "The only thing I received was this summons." Around noon, he finally sat down with an ARSI representative, who explained that the underlying bill had been garnished from his wages, but he still owed $328 in interest and court fees. He had another couple thousand dollars in collections for separate bills he hadn't paid, for which he hadn't yet been sued. He said the most he could afford to pay, every two weeks, was $12.50.
Before the end of the Tuesday docket, Casement returned to the courtroom to read off the names of the hospital's defendants. Five had failed to show up for contempt citations, to give their reasons for missing their debtor's exams. Casement saw that two of the no-shows hadn't been properly notified of the hearing, so attorneys would need to try to reach them again. The judge read the names of the other three defendants and told the hospital's collections lawyer, "That would be a bench warrant if you want it."
The following morning, I was reading court files in the clerks' office when Christa Strickland arrived at 10:20 in flip-flops and black leggings, her caramel hair wrapped in a bun atop her head. She ran her finger down a docket on the bulletin board and asked why her case wasn't listed. When the clerk pulled up her file, she told Strickland that her contempt hearing had been on Tuesday and she was one day late. "You need to call the law office of Amber Brehm," the clerk insisted, referring to ARSI's contracted lawyer, who represents the hospital. She handed over the phone number.
Strickland sat on a hard bench and took out her cellphone. She had saved the hearing in the wrong day on her calendar, but she had taken the day off from work and wanted to clear up the misunderstanding. "I had a court date," she said when a man answered at the law office. "I thought it was today but apparently it was yesterday. I'm just needing to see if I can set something up?"
"By not appearing at that, the court would be in the process of issuing a bench warrant," he said.
"What does that mean?" Strickland asked, shaking her head.
"You don't know what a bench warrant means?" he asked. "That means you will be arrested and taken to jail and ordered to post bond."
"Oh my God." Strickland squeezed her eyes shut, wetness smudging her mascara. She poked at her cheek with her index finger. Her father was a preacher. She'd never been in trouble with the law. She had made a mistake, she tried to explain. She wanted to make an arrangement to pay.
The man on the phone told her that it might take a couple weeks before the court processed her warrant paperwork, which the law office had not yet submitted. Once the judge issued the warrant, she could turn herself in. Strickland wanted to scream, I'll pay the bill, don't make me go to jail! but she didn't have the money. Instead, she looked at the ceiling and asked: "Turn myself into the court? The police station?"
"The Sheriff's Department," he responded.
"They're here in the same building," she said. "I won't leave here until I get this figured out. Thank you!"
She hung up. Prick, she muttered to herself. You're going to talk to me like I'm a freaking idiot? That's not okay. Educate me. The court has to process it? Her mind kept moving in circles. She herself worked in debt collection, for an auto title lending company. She understood that everyone was doing their job. Still, she couldn't grasp how this bill had gotten this far.
Before she had taken this position, during her second pregnancy, her right breast had developed a chronic infection. In 2008, she was uninsured, needed surgery to remove the swollen abscess and ran up a $2,514 bill. More than a decade later, she was still chipping away at a balance that, because of interest and court fees, had more than doubled to $5,736. She had fallen behind on her monthly payment plan and now worried that her booking photo would be on Mugshot Monday, a Facebook album run by the Police Department. She imagined what she would tell her boss: I went to jail … because I missed a court date … for medical bills. It sounded absurd.
She spotted a sheriff's deputy in a bulletproof vest with a name tag that said Bishop and a pistol on his hip. "Hey!" she called out, explaining her phone call and how the man said something about a warrant and turning herself in. Bishop radioed into dispatch and smiled with an update: "There's no warrant in the system yet," he told her.
"Yet!" Strickland replied, deflating his look of reassurance. "That's what I'm worrying about."
"You better give Amber a call back," Bishop said.
When I asked ARSI about how attorneys decide to request warrants, Joshua Shea, who is general counsel, told me that they don't. The judge can choose to issue one if court orders are not followed, he said. But Casement said the opposite, telling me that he gave the choice to the attorneys. "I'm not ordering a bench warrant. My decision is to give them that option," Casement told me. "Whether they exercise it is up to them, but they have my blessing if that's what they want to do."
Shea sent me an eight-page email to make clear, in large part, that ARSI, as a collection agency, has no involvement in the courts, and that Brehm is a lawyer whom the agency contractually employs and who represents the hospital directly. Her email address, though, has an ARSI domain, and her resume lists her as ARSI's director of legal. Brehm said that court hearings aren't the only option for debtors, who can call her instead and answer questions under oath. Shea said nobody — not the hospital, ARSI, Brehm or the court — uses the threat of jail to "extract payment."
Strickland reached Brehm after several days, and the attorney agreed to a new hearing. On Aug. 13, when they met in court, Brehm sat at the front of the room.
"We're giving you a second chance on that citation; just to try to take care of this without there having to be any sort of bench warrant," the lawyer said. "I want to make sure that we're all on the same page about the consequences of not coming into court when the order has been issued."
Strickland nodded.
"Again, if you set a payment plan and keep it," Brehm said, "we won't have to worry about that."
In some courthouses, like Coffeyville's, collection attorneys are not only invited to decide when warrants are issued, but they can also shape how law is applied. Recently, Hassenplug came to believe that debtors were only attending every other hearing in a scheme to avoid jail, and he raised his concern with the judge. He suggested that the judge could fix this by charging extra legal fees; Casement wrote a new policy explaining that anyone who missed two debtor's exam hearings without a good reason would be ordered to pay an extra $50 to cover the plaintiff's attorney fees. If they didn't pay, they would be given a two-day jail sentence; for each additional hearing that they missed, they would be charged a higher attorney fee and get a longer sentence.
Most states don't allow contempt charges to be used for nonpayment, and some, like Indiana and Florida, have concluded that it is unconstitutional. Michael Crowell, a retired law professor at the University of North Carolina and an expert in judicial authority, reviewed Casement's policy. "You can't lock people up for contempt for failing to pay unless you have gone to the trouble to determine that they really have the ability to pay," he said. Casement told me he hadn't made findings on ability to pay before ordering defendants to foot attorney's fees, "but I know that's something the court should consider," he said. He also made plain why he wrote the policy: "Mr. Hassenplug and Brehm's outfit have asked me to." (Brehm denied she requested this.)
Casement has not done everything the debt collection lawyers have suggested. At first, he agreed to their requests to set bail at the amount of the debt, but he eventually settled on $500. "Most people can come up with $500," he said. "It may not be their money, but they know someone who will pay." He made sure no one was arrested unless they'd been reached by personal service or certified mail.
Kansas law allows courts to order debtors in "from time to time," leaving discretion to judges. Casement limited the frequency of Hassenplug's debtor's exams to once every three months. He came to the decision by his own logic around what seemed like a reasonable burden for defendants, and it remains his personal policy today. The law also states that anyone found to be disabled and unable to pay can only be ordered to appear once a year. Without an attorney, debtors like Kenneth Maggard don't know to assert this right.
Allowing bail money to count toward collections raises some of the most critical legal questions. Hassenplug told me that he thinks it's great that cash bail is applied to the debt. "A lot of times, that's the only time we get paid, is if they go to jail," he said. Peter Holland, the former director of the Consumer Protection Clinic at the University of Maryland Law School, explained that this practice reveals that the jailing is not about contempt, but about collection. "Most judges will tell you, 'I'm working for the rule of law, and if you don't show up and you were summoned, there have to be consequences,'" he explained. "But the proof is in the pudding: If the judge is upholding the rule of law, he would give the bail money back to you when you appear in court. Instead, he is using his power to take money from you and hand it to the debt collector. It raises constitutional questions."
Congress has not acted on advocates' calls to amend the Fair Debt Collection Practices Act to prohibit collectors from requesting warrants. There are also no current efforts to bar nonprofit hospitals or medical providers that receive funds through Medicare or Medicaid from seeking warrants. Some states have reformed their laws, to make sure defendants are properly served or to prohibit wage garnishments for debt. But legal experts on collections say that more remains to be done, like taking jail out of the equation and instead requiring debtors to sign a financial affidavit or a promise to appear.
Shea, from ARSI, said that using the legal process is time-consuming and costly — a last resort; arrests are "the least desirable stage for any case to reach for all involved." Even after lawsuits are filed, they try to connect eligible debtors with the Coffeyville hospital to apply for financial assistance, he said. Last year, the hospital wrote off $1.7 million in charity care, said Bell, the hospital lawyer. "That is evidence of a hospital that cares."
Casement said he did not consider the legality of his policies a problem. He placed some blame on the health care system. "What we have isn't working," he said. "As a lifelong Republican, I would probably be hung, but I think we need health care for everybody with some limits on what it's going to cost us."
The way he saw it, he had wide latitude to enforce compliance with a court orders, though he acknowledged that creditors used bail money to their advantage. "I don't know whether the Legislature intended it to be used that way or not," he told me. "I have not had enough pushback from the defendants' side to give me the impression that I'm really abusing this badly."
Before I left Coffeyville, I sat down with Hassenplug in the low-ceilinged courtroom. I asked him whether he thought that the system in Coffeyville was effectively imprisonment for debt, in a country that has outlawed debtors' prisons. "The only thing they're in jail for is not appearing," he replied. "I do my job, I follow the law. You just have to show up in court."
Debt collection is an $11 billion industry, involving nearly 8,000 firms across the country. Medical debt makes up almost half of what's collected each year. Today, millions of debt collection suits are overwhelming state courts. The practice is considered a "race of the diligent," where every creditor is rushing to the courthouse, hustling to get the first judgment, in order to be the first to collect on a debtor's assets. In Hassenplug's view, though, this work is not the rich taking from the poor. He laughed at how locals spread rumors, saying that he seized wheelchairs or Christmas trees. Once, he confessed, he took a man's Rolex, only to find out it was a fake. Some months, he said, even his law office could not make ends meet.
After a couple of hours, a clerk poked her head into the courtroom and told us it was time to leave. Hassenplug and I began to walk out, and on the terrazzo steps, he asked if I wanted to see his buildings. He owned five of them on a shuttered stretch of town. He wondered out loud if he was making a mistake by inviting me, but he was pleased when I accepted. "There ain't any place on earth quieter than downtown Coffeyville," he said, leading me into the silent streets.
He walked me through the alleys under a cloudless sky, and when he arrived at one of his buildings, he tapped a code to his garage. The door lifted, and inside, five perfectly maintained motorcycles, Yamahas and Suzukis, were propped in a line. To their left, nine pristine, candy-colored cars were arranged – a Camaro SS with orange stripes, a Pontiac Trans Am, a vintage Silverado pickup with velvet seats. He toured me around the show cars, peering into their windows, and mused about what his hard work had gotten him.
Lizzie Presser covers health and healthcare policy at ProPublica. She previously worked as a contributing writer for The California Sunday Magazine, where she wrote about labor, immigration, and how social policy is experienced.
The U.S. Centers for Medicare and Medicaid Services "takes allegations of abuse and mistreatment seriously," spokeswoman Maria LoPiccolo said in an email on Monday. "CMS is actively monitoring the situation and is in close communication with" New Jersey's Department of Health, she added. The department said Friday that it was reviewing the allegations.
CMS works with state health departments to review transplant programs and determine if they are eligible for Medicare reimbursement.
ProPublica's investigation found that Newark Beth Israel's transplant team was worried about the possibility of being disciplined by CMS after six out of 38 patients who received heart transplants in 2018 died before their one-year anniversary. That translated to an 84.2% survival rate, considerably worse than the 91.5% national probability of surviving a year for heart transplant patients, according to the Scientific Registry of Transplant Recipients, which tracks and analyzes outcomes for the government.
The team appeared to tailor medical decisions for at least four patients because of these concerns. In the case of Darryl Young, a heart transplant recipient, members of the medical staff didn't offer options like hospice care to his family because they wanted to make sure Young lived at least a year after his surgery, according to current and former employees familiar with his care.
In an audio recording obtained by ProPublica, Dr. Mark Zucker, the director of the heart and lung transplant programs, told the team at an April meeting, "I'm not sure that this is ethical, moral or right," but it's "for the global good of the future transplant recipients."In response to the concerns raised by the article, Newark Beth Israel said that it would conduct an "evaluation and review of the program, its processes and its leadership." It later added that it had hired an outside consultant to perform the review.
Dr. Herb Conaway, a New Jersey assemblyman and chair of the Legislature's Health and Senior Services Committee, called for the transplant team's actions to be reviewed. "The implicated doctors must face consequences if the allegations are indeed accurate," he said in a statement on Friday. "Their actions are a stain on the entire medical community, and they must be held accountable for what they have done to both this patient and his family."
The editorial board of The Star-Ledger in Newark, which co-published the ProPublica investigation, urged prompt scrutiny of the hospital. "This is astoundingly unethical, and if true, should prompt firings of those involved and a federal and state review," the board wrote. "The Attorney General's Office should look into it, too, in case there's something criminal here."
The Attorney General's Office and the New Jersey Board of Medical Examiners would not confirm or deny the existence of investigations, a spokeswoman said.
Darryl Young suffered brain damage during a heart transplant at Newark Beth Israel and never woke up. Doctors kept him alive for a year to avoid federal scrutiny.
This article was first published on Thursday, October 3, 2019 in ProPublica and was co-published with NJ Advance Media.
This story was co-published with NJ Advance Media.
On a Thursday morning this past April, 61-year-old Darryl Young was lying unconscious in the eighth-floor intensive care unit of Newark Beth Israel Medical Center. After suffering from congestive heart failure for years, Young, a Navy veteran and former truck driver with three children, had received a heart transplant on Sept. 21, 2018. He didn't wake up after the operation and had been in a vegetative state ever since.
Machines whirred in his room, pumping air into his lungs. Nutrients and fluids dripped from a tube into his stomach. Young had always been fastidious, but now his hair and toenails had grown long.
A nurse suctioned mucus from his throat several times a day to keep him from choking, according to employees familiar with his care. His medical record would note: "He follows no commands. He looks very encephalopathic" — brain damaged.
That day, in another wing of the hospital, where a group of surgeons, cardiologists, transplant coordinators, nurses and social workers gathered for their weekly meeting in a second-floor conference room, his name came up.
"Anything on Darryl Young?" asked cardiologist Dr. Darko Vucicevic, according to a recording of the meeting obtained by ProPublica.
"Need to keep him alive till June 30 at a minimum," responded Dr. Mark Zucker, director of the hospital's heart and lung transplant programs.
Since the transplant, Young had suffered from pneumonia, strokes, seizures and a fungal infection. The Newark transplant team believed that he would never wake up or recover function, according to current and former staff members familiar with his case, as well as audio recordings. Yet they wanted to do all they could to keep his new heart beating.
The recordings show that the transplant team was fixated on keeping him alive, rather than his quality of life or his family's wishes, because of worries about the transplant program's survival rate, the proportion of people undergoing transplants who are still alive a year after their operations.
Federal regulators rely on this statistic to evaluate — and sometimes penalize — transplant programs, giving hospitals across the country a reputational and financial incentive to game it. Newark Beth Israel's one-year survival rate for heart transplants had dipped, and if Young were to die too soon, the program's standing and even its own survival might be in jeopardy.
June 30, Zucker explained at the meeting, was the date of the next report by a federally funded organization that tracks transplant survival rates. "If he's not dead in this report, even if he's dead in the next report, it becomes an issue that moves out six more months," he said in the recording.
Zucker cautioned the staff against offering Young's family the option of switching from aggressive treatment to palliative care, which focuses on comfort, until September, which would mark one year since his transplant. "This is very disingenuous, right? It's very unethical."
Dr. Martin Strueber, a transplant surgeon who has since left the hospital, then expressed hope that the transplant team could "move the program forward ... to a status that we never ever have this discussion again," or even have to "think about this ethical dilemma of keeping somebody alive for the sake of the program."
Dr. Navin Rajagopalan, the heart program's medical director, wanted to make sure the family hadn't already requested palliative treatment. "They've not asked...for us to withdraw care?" he asked. "I'm playing devil's advocate" he went on. "It's not as if they're asking for this and we're saying no, we cannot do this."
Zucker replied, "We haven't refused anything they've asked." He added, "We just haven't raised withdrawing it."
In the ensuing months, the doctors continued to leave Young's family in the dark, according to his sister Andrea and employees familiar with Young's care. They didn't want to run any risk that the people who loved him would interfere with their agenda: boosting the program's numbers. "I'm not sure that this is ethical, moral or right," Zucker told the team at the April meeting, but it's "for the global good of the future transplant recipients."
In 2007, the U.S. Centers for Medicare and Medicaid Services, which tracks outcomes of all organ transplants, set quality standards after a number of high profile mishaps at other hospitals, including a teenage girl receiving a heart and lung with the wrong blood type. Under those rules, the one-year survival rate has been "the magic number," according to Laura Aguiar, principal of consulting firm Transplant Solutions.
If a program's survival rate fell too far under its expected rate, which was calculated by a CMS algorithm, the agency could launch an audit. If the audit uncovered serious problems, CMS could pull a program's Medicare certification, meaning that the federal health care insurer would stop reimbursing for transplants. This penalty can be "devastating," Aguiar said, because many commercial insurers and some state Medicaid plans only pay for procedures at Medicare-approved programs. Hospitals charge about $1.4 million for a heart transplant, consulting firm Milliman reported in 2017.
In the past decade, more than 20 transplant programs lost Medicare funding after CMS found deficiencies; most shut down, according to the agency. An additional 40 reached a Systems Improvement Agreement with CMS, allowing them to continue receiving federal funding while getting back into compliance with the agency's requirements.
In 2008, Johns Hopkins' liver transplant program entered into such an agreement with CMS because of lower-than-expected performance outcomes. More recently, CMS cut off funding to Baylor St. Luke's Medical Center's heart transplant program, following an investigation by ProPublica and the Houston Chronicle revealing a high rate of patient deaths. The hospital initially appealed but then opted instead to reapply at a later date.
To bolster their survival rates, some transplant centers have turned down patients who were considered too sick or rejected organs that were deemed imperfect. Critics have said that this conservative approach can deprive patients of the chance to receive lifesaving treatment and waste potentially usable organs at a time when the demand for them far outpaces the supply.
Newark Beth Israel shows another facet of how transplant providers can game the system, a ProPublica investigation found. Worried that the transplant program's existence was threatened by a downturn in its survival rate, doctors appeared to tailor medical decisions to the metrics for at least four patients, and they sometimes didn't consult adequately with patients and family members.
This story is based on medical records, emails and text messages, and interviews with family members as well as eight current and former staff at Newark Beth Israel, who spoke on the condition of anonymity for fear of jeopardizing their jobs or future employment in the field. The recordings were corroborated by staff members who were present during those discussions and verified the identities of the speakers.
Newark Beth Israel said in a statement that, in response to the concerns raised by ProPublica, it is "conducting an evaluation and review of the program, its processes and its leadership."
In an apparent reference to the recordings, it said that "disclosures of select portions of lengthy and highly complex medical discussions, when taken out of context, may distort the intent of conversations." The hospital also said that its transplant program "has saved countless lives" and consistently met or exceeded all regulatory guidelines to maintain funding and certification, including providing one-year survival rates.
The hospital didn't respond to questions about Young, even though his family signed a release allowing Newark Beth Israel to discuss details of his care. A spokeswoman said its statement was made on behalf of Zucker and other transplant team members, as well as hospital administrators. Strueber declined comment separately, saying he "was not directly involved in the care of Mr. Darryl Young nor in the interactions with his family."
The hospital also emphasized its commitment to being transparent with patients and their families. "Our patients are our utmost priority and communication with our patients and their families is paramount in enabling our team to provide the best and most comprehensive care," it said.
In Darryl Young's case, though, the staff's reluctance to discuss treatment options with his family appears to run counter to the American Medical Association's code of ethics, which encourages physicians to communicate "routinely" with patients about their care goals. When a patient is not able to communicate, the physician "has an ethical responsibility to candidly and compassionately discuss these issues with the patient's authorized surrogate and document the surrogate's decision in the medical record." Withdrawing life-sustaining treatment is ethically acceptable, the AMA adds. "When an intervention no longer helps to achieve the patient's goals for care or desired quality of life, it is ethically appropriate for physicians to withdraw it."
After listening to the recordings, Young's daughter, Taccara Beale, was furious. "How dare you take it upon yourself to withhold such information from any family?" Beale said. "They took a decision away from us."
Arthur Caplan, head of the Division of Medical Ethics at NYU School of Medicine, reviewed transcripts of the recordings, including discussions about Young. "The management of this patient is egregiously unethical," he said. "Prolonging 'dying' to preserve a flawed transplant program makes a mockery of transplant medicine and is an assault on both ethics and compassion."
Founded in 1901, Newark Beth Israel has 665 beds and prides itself on its heart and lung transplant program. RWJBarnabas Health, a hospital network with which Newark Beth Israel is affiliated, countsit among "the best heart transplant hospitals that patients can trust."
A large banner on the hospital's brown brick facade proclaims, "1,000 hearts transplanted. Countless lives touched." One of the top 20 programs in the country by volume, it has performed 1,090 heart transplants to date, according to the hospital.
Another banner declares that Newark Beth Israel has New Jersey's only lung transplant program. The hospital transplants far fewer lungs than hearts; 16 lungs in 2017 and 15 in 2018, compared with 49 hearts in 2017 and 38 in 2018. The lung program shut down temporarily in 2013 because of a lack of staff. For most of 2019, it has had only one lung surgeon.
Zucker has been the director of the heart transplant program for 30 years. His team currently includes five cardiologists and a surgeon, according to the hospital's website, plus nurses, transplant coordinators, social workers, dieticians and a pharmacist.
Dr. Margarita Camacho, the surgeon who performs the vast majority of heart transplants, including Young's, has been at the hospital since 2005. She's well known for her practice of retrieving donor hearts in person: traveling to the donor's hospital, inspecting the heart and bringing it back for surgery. A donated organ should be used within four to six hours of removal, so once a heart becomes available, it needs to be flown to the recipient's hospital and rushed to the operating room. In a 2013 videoposted online by Newark Beth Israel, Camacho boards a plane and says, "I'm very well suited for this job, because I love it, I really do love what I do — I'm very fortunate, but I also can survive on cat naps."
A heart transplant is a complex and difficult operation. Surgery can last eight hours. Afterward, patients must take medication for the rest of their lives in order to prevent their immune system from rejecting the new heart.
Nonetheless, most transplants are successful, at least by the government's one-year metric. The national probability of surviving for a year for heart patients transplanted between January 2016 through June 2018 was 91.5%, according to the Scientific Registry of Transplant Recipients, which is funded by the U.S. Department of Health and Human Services to track and analyze transplant outcomes. (SRTR publishes the semiannual reports that Zucker referred to when he said that Young needed to be kept alive until at least June 30.)
From 2008 through 2017, Newark Beth Israel's annual one-year survival rate for patients receiving a heart transplant has never dipped below 85.7%, rising as high as 96.9% in 2012, according to SRTR. But its performance declined in 2018 for reasons that remain unclear. Of 38 patients who received a heart transplant, six have already died within a year of their surgery, according to current and former staff. The causes ranged from complications after severe oxygen deprivation to the brain to a parasitic infection.
The six deaths translated into an 84.2% survival rate. If Young were to be the seventh, the rate would slip further, to 81.6%, well below the national average — and unlikely, the transplant team worried, to escape the federal government's attention.
For nearly a year now, Andrea Young has commuted an hour each way from Trenton every week to sit by her older brother's bedside, holding his hand and praying for his recovery. She is also Darryl's health care proxy; he had designated her to make decisions about his treatment, in the event that he was unable to do so himself.
Andrea, who is 59, retired at 55 from a decadeslong position as an analyst at the New Jersey Motor Vehicle Commission. She and Darryl had always been close. He joined the Navy at the age of 18 and served four years on the USS Kitty Hawk, naval records show. After spending time on opposite coasts, both siblings returned to New Jersey, where their mother's family lived, to settle down. They both loved keeping up with the news, sometimes calling each other as late as 11 p.m. to discuss a breaking story on cable TV.
"We talked every day," she said. "We'd call sometimes two times, even four times in a day. Now I feel a big void."
After a heart attack, Young received a mechanical pump, known as a left ventricular assist device, or LVAD, in 2014, according to his sister and medical records. The implanted device is often used as a bridge to transplant, helping to keep a patient's heart going while waiting for an organ match. The LVAD comes with a control unit, and batteries are worn in a holster. Showers are awkward because the equipment must stay dry.
Young was always impeccably dressed, wearing a suit to medical appointments. He spent so much time chatting with the nursing staff that the meetings would often run over, according to employees. He never complained, his sister said. He loved life and was hopeful that a heart transplant would help him continue to enjoy it.
After about three years on the waitlist, Young received a call from Newark Beth Israel late at night on Sept. 20, 2018, Andrea recalled. A heart was available. He was told to arrive at the hospital as soon as possible and went into surgery the following day. At Newark Beth Israel, surgery candidates aren't required to spell out their wishes for care in the event of being incapacitated, and Young didn't.
Initially, his family was told that the operation had gone well, and there was no reason to worry, his sister said. A few days after the transplant, Andrea Young spoke with Camacho on the phone and asked why her brother hadn't woken up yet. Camacho reassured her, saying she'd seen many patients in similar situations make "a full recovery," Andrea recalled.
As days turned into weeks, she became increasingly concerned. "I didn't have a good feeling," she said. "None of the doctors were very forthcoming. I felt like they were hiding something."
About three weeks after the surgery, Andrea Young said, she requested a meeting with her brother's medical team. But first, she went to her local library and checked out some neurology textbooks. Although her hands were full with two children she had adopted — brothers who were 5 and 6 years old — she made time to pore over the textbooks, trying to prepare so she could ask the correct questions. "I studied them for six hours, trying to understand," she said.
At the meeting, she asked if the surgeon had seen any sign that her brother's brain was deprived of oxygen during the surgery. Camacho said no, Young recalled. It was another cardiologist, whose name Andrea can't recall, who told her around this time that Young's MRI showed brain damage.
"I asked, Which part of the brain? And he said, 'Every part, but just a very small part of each section,' and that gave me hope. Now I know it was false hope."
Typically, if a patient suffers brain damage in an operation and doesn't wake up, doctors are supposed to meet with the family to explain the prognosis and options for care.
"You'd explain in a direct and empathetic way that it's not likely that this person will recover in a clinically meaningful way and then the question you'd hone in on is, 'If your loved one were awake to hear this, what would he or she want?'" said Dr. Ali Zarrabi, assistant professor of medicine and palliative care physician at Emory University School of Medicine.
The options presented would range from hospice care — which typically entails removing machine support, such as a ventilator, and not administering antibiotics for an infection — to a do not resuscitate order in case of cardiac arrest, to life-sustaining therapy.
But even though a few staff members suggested that the team schedule a meeting for Young's family to discuss options for his care, including hospice, the medical staff didn't have this conversation with Young's family, according to Andrea and employees familiar with his care.
Doctors also didn't inform Andrea when her brother contracted C. auris, a dangerous fungal infection that the U.S. Centers for Disease Control and Prevention says is a "serious global health threat" because it is difficult to identify and is often resistant to multiple drugs.
According to text messages reviewed by ProPublica, Darryl Young had been treated for the infection at least once by early March. But Andrea said she only learned about it when a social worker mentioned it to her in late May. She searched on Google for information about the fungus.
"I had to ask for every meeting," Andrea said. "I had to dig and dig and dig. I was on my own trying to do the technical research."
Several nurses as well as a social worker were remarkably compassionate and caring toward her brother, Andrea said. Still, she struggled to get basic cosmetic care for him, she said. It grieved her to see his physical appearance neglected, with his toenails overgrown. She said she requested that the medical staff trim his nails, but it took four months before someone finally tended to them.
Leaders of the transplant program saw no alternative to keeping Young alive, employees said. Camacho, the heart surgeon, has more than once told staff that Young needs to "take one for the team," according to two people with direct knowledge of these remarks.
At a meeting in May, Zucker articulated the trade-off. "This is a very, very unethical, immoral but unfortunately very practical solution, because the reality here is that you haven't saved anybody if your program gets shut down," he said, according to an audio recording obtained by ProPublica.
Young "unfortunately became the seventh potential death in a very bad year, all right, and that puts us into a very difficult spot," Zucker said.
If Young died too soon, he continued, CMS might force the program to enter a Systems Improvement Agreement. "You haven't saved anybody if you spend $2 million in an SIA trying to defend your program, bringing outside reviewers in for two years to supervise every single transplant you do."
According to Aguiar, the transplant consultant, $2 million is actually a low estimate of what an SIA would cost a hospital. "Usually transplants are the treatment of last resort, and you have patients referred as they're approaching end-stage organ failure, so if there's no more transplant program there, referrals can dry up," causing a hospital to lose business beyond the direct expense of an SIA, she said.
For several months, administrators at a weekly hospital-wide meeting known as the "Bed Board" kept asking the transplant team why Young was occupying a hospital bed, rather than being sent to a long-term care facility, according to the recordings.
Hospitals typically prefer short stays because they need beds for other patients and can start losing compensation if insurance runs out or the insurer thinks the patient should be released or transferred.
Care in an ICU unit typically costs more than $3,000 a day, according to a 2005 study of U.S. hospitals' billing data, and about $1,000 more when the patient is on a ventilator. (Young is supported by a ventilator overnight.) He is covered by Medicare and Medicaid, but Newark Beth Israel doesn't bill insurers until a patient is discharged. So, for the time being, the hospital was absorbing the cost of Young's stay.
As the hospital's chief operating officer, Douglas Zehner ran the "Bed Board" meetings. At a July transplant team meeting, Zucker said that Zehner approved the plan to keep Young in the hospital, according to an audio recording obtained by ProPublica.
Zucker said Zehner called him one night and said, "We, as an administration, have made a decision ... to house this man indefinitely so that he doesn't become a mortality," according to the recording. Zehner was promotedJuly 30 to regional chief financial officer for RWJBarnabas Health.
No matter how much treatment Young received, his prospects for long-term survival in a vegetative state were dim. Patients like him can be sustained by ventilators and feeding tubes but are likely to die within a couple of years, said Dr. Randi Huo, a palliative care physician at the Everett Clinic in Everett, Washington.
"You're looking at recurrent infection — he's fed through a tube, he could get bed sores, he has an opening in his throat, which means he's at risk of pneumonia," she said. "Eventually, organisms will become resistant enough that nothing works. Then he would become septic and die."
Even if Young isn't in pain or distress, Huo said, his loved ones should decide the course of his care. "If the care he's receiving is not appropriate to the life he wants to live — if medicine is not serving him, then why are [they] doing this?"
The one-year survival rate has dictated Newark Beth Israel's treatment of other patients besides Young, according to employees and the recordings.
"A lot of you weren't here for our first lung transplant when we reopened, after we reopened the program. The first lung transplant stayed at the hospital until day 366, was sent out to rehab and died that day," Camacho said at the May meeting, according to a recording obtained by ProPublica.
The month before, Zucker had a similar recollection: "We did the same thing once with a lung transplant patient and this was just critical, remember? Keep that lady alive?"
It isn't clear if Camacho and Zucker were talking about the same patient. One former employee recalled a lung transplant patient who stayed for exactly a year. "It was done on purpose and they wouldn't let her be discharged out," the ex-employee said.
Even for transplant patients whose conditions were not as critical as Young's, the one-year date has been a consideration. Yosry Awad went to Newark Beth Israel on May 13 for a routine biopsy of his new heart, according to a medical record. His one-year anniversary was coming up in two weeks, on May 27.
During his hospital visit, the checkup revealed that a measure of the pressure of the blood in the heart, called filling pressure, was high, according to staff familiar with his care. The medical team decided to admit Awad and treat him with diuretics, which can help reduce blood pressure.
Awad had suffered multiple serious complications after his transplant surgery the previous year, including a cardiac arrest that required his heart to be temporarily supported by a machine that performs the functions of the heart and lungs, according to medical records.
Given his history of complications, Newark's staff was anxious to make sure he would reach his one-year date, according to three people familiar with Awad's case.
A week and a half later, Awad was still at Newark Beth Israel. By that point, there was no medical reason requiring that he stay in the hospital, according to the three people. But the medical team delayed his discharge.
A medical record viewed by ProPublica stated that Awad "remains in very good spirits and is hopeful to go home prior to the holiday weekend. Per the medical team he will remain hospitalized through 5/27 to hit his one year anniversary."
After the weekend, the transplant team joked about Awad. "Well today is his one year, so congratulations!" said cardiologist Vucicevic. "Discharge!" chimed in medical director Rajagopalan, according to an audio recording and employees who witnessed the conversation.
In an interview at his home, Awad acknowledged that he had wanted to go home in May and spend Memorial Day weekend with his family. As far as he knew, he said, the hospital kept him because of his blood pressure problems. He added that he is grateful for the heart he received at Beth Israel. "I know I'm lucky," he said.
"We are not doctors or nurses, how would we know" whether his stay was justified, asked his sister and caregiver, Nagwa Helmy, who said she was satisfied with the hospital's care of her brother. Although Awad signed a release allowing the hospital to discuss his care, it did not respond to questions about him.
Another patient, who received both a heart and kidney transplant, similarly had a hospital stay extended until his one-year anniversary, according to two staff members familiar with his care. The patient's family did not respond to requests for comment.
Medical records reviewed by ProPublica show he was admitted at the end of last January with abdominal pain. About three weeks before the anniversary, Zucker instructed staff to "keep him alive," one employee recalled. When he reached the milestone on a Thursday in late March, the record noted, "1 year anniversary."
He was discharged the following Monday.
It wasn't until late July, 10 months after Young's surgery, that anyone at Newark Beth Israel consulted his sister about his future care.
Andrea Young recalled that she was leaving the hospital, already late to pick up her sons from school, when cardiologist Dr. Laurie Letarte asked her permission to do a procedure to see if the fungal infection had spread to Darryl Young's heart.
Letarte asked "what I would like to have done for my brother with respect to his treatment," Young recalled. Letarte, though, didn't go into detail about her brother's prognosis or options such as a do not resuscitate order.
Taken aback, Andrea said she responded, "I'm not making any absolute decisions." She said she asked Letarte to continue standard care for her brother for now. Nobody from the hospital followed up on the 10-minute conversation, Andrea said.
A few weeks later, sitting in her living room while her two boys zoomed up and down the stairs, bouncing onto the couch for a hug then running off to grab toys, Andrea mused about her desires for Darryl.
Wrestling with the pressure of making the correct decisions for her brother, she said she wasn't sure about hospice care, if it meant removing Young's ventilator. "I'm not ready to make that kind of decision," she said, adding that other family members might want to visit him first.
But she was contemplating a DNR order. "Why resuscitate someone who loved life so much?" she wondered.
After listening to the audio recordings of the transplant team's meetings, she shook her head. "I know that what happened could've not been intentional, but at the very least, they could be honest," she said. "People should be able to make informed decisions for themselves and their loved one."
She wondered if her brother could possibly be brought home to his own apartment someday.
"I want him to have the wind in his hair and the sun on his face," she said. "I want him to be as comfortable as he can."
On a Tuesday at the end of August, I accompanied Andrea on her weekly visit to her brother. On the eighth floor, we had to stop outside his room to put on gowns and gloves — precautions against an infection that could kill him.
Darryl Young's eyes were open, drifting over the ceiling. They did not connect with Andrea as she leaned over the bed, greeting him.
"Hi Darryl, how are you today?"
Young's corner room overlooked the street. It was bare of any personal effects — no photographs or cards to give a clue about the man who had been in the hospital for nearly a year. Instead, he was surrounded by machines. On the right of the bed was a monitor to track his vital signs.
On the left was the ventilator used at night to help him breathe, and hanging near him, a bottle of nutrients and a bag of liquid for hydration.
Every inhalation was accompanied by a gurgling noise, perhaps caused by mucus in his tracheostomy tube. The only other sound in the room came from the TV over the bed, set on CNN, which was warning of a hurricane approaching Puerto Rico.
Young asked a passing nurse if the doctors were around, and she was told that Zucker and Letarte weren't on the floor. She asked if anyone could tell her how her brother's most recent procedure had gone.
The hospital staff had told her that they would drain his lungs because he had a bout of pneumonia, and she had asked if someone could call her afterward and update her, but nobody had. The nurse said he didn't know.
Young turned back to her brother. She pulled up a song on her phone: "Lean on Me," which had been their mother's favorite tune.
She held her phone close to his ear so he could hear the lyrics: "Lean on me, when you're not strong, and I'll be your friend, I'll help you carry on...."
With her other hand, she stroked his face and arm.
"It's OK," she murmured. "You can close your eyes if you're tired, you can sleep."
Around that time, Andrea Young sat down and wrote a short statement, expressing her feelings about her brother's treatment.
"These revelations are deeply disturbing," she wrote. "I will be forever grateful to those who had the courage to come forward, possibly putting themselves at risk, to expose this hospital's wrongdoing. It is my hope that the appropriate action will be taken against the hospital as well as the doctors involved for such a betrayal of trust and for inflicting such pain upon me, my family, and many other families as well."
As part of the Trump administration's deregulatory push, it is relaxing performance requirements for transplant programs. Under a rule that was finalized last month and will take effect in November, transplant programs won't have to submit data on outcomes to CMS to receive Medicare reimbursement.
However, SRTR will continue to report one-year survival rates, and CMS says it will still monitor quality of care and investigate complaints.
Three days before the anniversary of Young's transplant, Andrea Young was met at the hospital by a cardiologist and a social worker. They told her that Darryl was now stable enough to consider a move to a long-term care facility. The social worker offered to start looking up facilities. Andrea Young asked why, after all this time, they were planning to transfer him. She didn't get a clear response, she said.
On Sept. 21, one year after his operation, Darryl Young was still alive, and still at Newark Beth Israel. After so long in a vegetative state, the chances of a patient regaining the ability to communicate are "grim to none," said Dr. Joseph Safdieh, associate professor of neurology at Weill Cornell Medicine. But for the hospital, Young now counted as a victory.
Inmates suffering heart attacks, on the verge of diabetic comas and brutalized in jail beatings have been released so sheriffs wouldn't have to pay for their medical care.
Michael Tidwell's blood sugar reading was at least 15 times his normal level when sheriff's deputies took him to the hospital. But before they loaded the inmate into the back of a car, deputies propped up his slumping body and handed him a pen so he could sign a release from the Washington County Jail.
"I could barely stand up or keep my eyes open," he recalled.
Tidwell said that he didn't know what he was signing at the time, and that he lost consciousness a short time later. The consequences of his signature only became clear in the weeks that followed the 2013 medical emergency.
By signing the document, which freed him on bond from the small jail in south Alabama, Tidwell had in essence agreed that the Washington County Sheriff's Office would not be responsible for his medical costs, which included the two days he spent in a diabetic coma in intensive care at Springhill Medical Center in Mobile.
It's unclear whether Tidwell, who was uninsured at the time and in poor health afterward, was billed for his care or if the medical providers wrote it off. Neither Tidwell's attorneys nor the hospital was able to say, and Tidwell was unable to get answers when he and a reporter called the hospital's billing department.
What is clear is that the sheriff's office avoided paying Tidwell's hospital bills.
Tidwell had been on the receiving end of a practice referred to by many in law enforcement as a "medical bond." Sheriffs across Alabama are increasingly deploying the tactic to avoid having to pay when inmates face medical emergencies or require expensive procedures — even ones that are necessary only because an inmate received inadequate care while incarcerated.
What's more, once they recover, some inmates are quickly rearrested and booked back into the jail from which they were released.
Local jails across the country have long been faulted for providing substandard medical care. In Alabama, for instance, a mentally ill man died from flesh-eating bacteria 15 days after being booked into the Mobile County Metro Jail in 2000. And in 2013, a 19-year-old man died of gangrene less than a month after he was booked into the Madison County Jail. In both cases, officials denied wrongdoing and surviving relatives settled lawsuits alleging that poor jail health care contributed to their loved ones' deaths.
But the use of medical bonds isn't about inferior care. It's about who pays for care.
While medical bonds have been a last resort in many states for more than 20 years, experts say they are employed in Alabama more often than elsewhere. Their use in some counties but not in others illustrates the vast power and latitude that sheriffs have in Alabama, which is the subject of a yearlong examination by AL.com and ProPublica.
Several Alabama sheriffs, including Washington County Sheriff Richard Stringer, said in interviews that they often find ways to release inmates with sudden health problems to avoid responsibility for their medical costs. Stringer denied any wrongdoing in his office's handling of Tidwell's emergency.
"We had a guy a couple of weeks ago with congestive heart failure. … The judge let him make bond so the county didn't get stuck with that bill," Lamar County Sheriff Hal Allred said in a March telephone interview. "We don't have any medical staff in the jail. I wish we did, that would be great, but the way the county finances are, I won't live long enough to see it."
Typically the process works like this: When an inmate awaiting trial is in a medical crisis, a sheriff or jail staffer requests that a judge allow him or her to be released on bond just before, or shortly after, the inmate is taken to a hospital. If the request is granted, the inmate typically signs the document granting the release.
Michael Jackson, district attorney for Alabama's 4th Judicial Circuit, said he is aware of multiple recent cases in which sheriffs released inmates on bond without first obtaining a judge's approval. Jackson said he also worries about the risk of inmates reoffending after they receive medical treatment.
"I'm not saying there should be no situation where an inmate can get released early, but it shouldn't be about money," Jackson said in a phone interview this month. "No one's watching them when they get out, and people might get robbed or their houses might get broken into."
While judges usually sign off on bonds, lawyers who represent inmates and other experts say sheriffs are often the key decision-makers and can be held legally responsible for what happens after they release inmates via such methods.
If an inmate is already sick or injured when he or she is released, sheriffs are "not going to be able to avoid the liability just by opening the trap door and letting them go," said Henry Brewster, one of Tidwell's attorneys.
'They Have to Do Something'
Shortly after Tidwell was locked up for a probation violation in 2013, his sister Michelle Alford, a nurse at a Mobile hospital, said she brought his diabetes medications to the Washington County Jail and gave them to the guard on duty.
She says she explained to the staff that her brother is a "brittle" diabetic, meaning he needs frequent monitoring. She provided the jail with a two-page document that explained how often his blood sugar needed to be checked, what symptoms to watch for and the purpose of each medication.
The jail's employees, none of whom had any formal medical training, did not follow those instructions, according to Tidwell's jailhouse medical records, a copy of which Alford provided to AL.com and ProPublica.
On his fourth day in the aging jailhouse, Tidwell became ill and vomited off and on for the ensuing 48 hours. He was unconscious for most of his final two days there, according to court and medical records.
Before he was taken to Washington County Hospital, Tidwell's blood sugar reading was 1,500 mg/dl; a normal reading for him is 80 to 100 mg/dl. Over the less than seven full days he was incarcerated, he had lost at least 17 pounds, records show.
Tidwell's release form bears his signature scrawled incomprehensibly outside the signature box, overlapping the typed prompt for "Signature of Defendant." It does not match other examples of his signature on court documents reviewed by AL.com and ProPublica.
"If you're in there and you get sick, they have to do something and get some medical attention," he said. "But if you're in so bad of shape that they're trying to hold you up and get you to sign something, that's wrong."
Tidwell, who was 42 at the time, was assessed at the local hospital and taken to Springhill, a larger and better-equipped hospital, where he lay in a coma in the intensive care unit. He was suffering from renal failure and other complications related to his diabetes, according to the records.
During a conversation in his office in downtown Chatom, Stringer, the Washington County sheriff, said that he and his jail staffers are not medically trained. Instead, they "listen to what [inmates are] complaining about and examine them to determine if they need medical bond, because people will do anything to get out of jail."
If they decide an inmate has a serious and potentially costly medical issue — and doesn't pose a threat to the public — Stringer said he or the jail's administrator will call a judge and request that the inmate be released.
Asked last week whether he believes Tidwell was legally able to provide consent to being bonded out, Stringer said: "They've got to be physically able to sign the bond. I'm sure he was [conscious] or he wouldn't have been able to be bonded out. … It's been so long ago it's hard to remember all these things. I'm sure we did what needed to be done."
But in an earlier interview, the sheriff provided an alternate explanation for Tidwell's hospitalization.
"When someone comes in and says he's a diabetic, we try to prepare a meal that will accommodate his diabetes," Stringer said. "But now on commissary, they're on their own there. I mean, you know you're diabetic. Don't order — he actually ordered 12 honey buns."Tidwell, who denies eating a dozen honey buns in the jail, recovered and was sent home from the hospital.
He filed a lawsuit against Stringer and several sheriff's office employees in 2014; it was settled the following year. Stringer said he believes he and his employees would have been exonerated had the suit gone to trial, but because he said the settlement was for "something like $20,000 ... it's not worth fighting it."
But Tidwell's problems didn't end there. Exactly three months after Tidwell was released on bond, a judge issued a bench warrant for his arrest on another probation violation.
'They'll Lower the Bond'
AL.com and ProPublica have reviewed the cases or media reports of inmates in 15 of Alabama's 67 counties who were issued last-minute bonds or released on their own recognizance just before they were hospitalized for emergencies.
In September 2018, for instance, a 38-year-old inmate at the Lauderdale County Jail was taken to a nearby hospital after he suffered a stroke that left him partially paralyzed and unable to communicate verbally, stand or perform daily tasks, state court records show. The inmate, Scottie Davis, was released from sheriff's office custody on bond the following day, though he couldn't sign the release document. Someone instead wrote the words "Unable to sign due to medical cond." in the space for the inmate's signature. Davis was responsible for the medical costs after he was bonded out.
Lauderdale County Sheriff Rick Singleton said when inmates are too ill to sign their names, sheriff's officials notify a judge who decides whether to allow them to be released on bond.
And earlier last year, in Randolph County, an inmate was released on a medical bond before going to the hospital for surgery, according to The Randolph Leader, a local newspaper. When he wasn't able to immediately get the procedure, he was rearrested on a new misdemeanor charge and booked back into the Randolph County Jail.
The county ended up on the hook for the over $10,000 the procedure was expected to cost. Some county officials view the turn of events as an unfortunate financial setback.
Randolph County Commissioner Lathonia Wright said in a phone interview this month that paying inmates' hospital bills is "really rough" on the county's budget, but it sometimes can't be avoided.
"I hate that we have to pay for it out of taxpayer money, but the law demands that we take care of people that are incarcerated in the jail," he said. "If we get a bill, we pay for our medical bills. They come straight from the hospital."
In urban counties with larger populations, the majority of inmates' medical problems are dealt with in the jails, usually by private companies that provide infirmaries, round-the-clock nurses and doctors who make regular visits.
But in some rural counties, sheriffs do not have any staff members with medical training or the budget to absorb significant hospital costs.
Jim Underwood, who was sheriff of Walker County from 2015 until January, said the county budgeted about $350,000 per year for jail health care while he was in office. The sheriff's office did everything it could to keep costs down, Underwood said, adding that before he was sheriff, one inmate's medical care cost about $300,000.
"I think that a lot of it does depend on what they're charged with … but there are people released because of medical bills," he said. "You have to go through the judge; they'll lower the bond."
Underwood said he believes the practice "happens everywhere" in Alabama, though it takes different forms in different counties. One sheriff's office has paid for inmates to wear ankle monitors while out on bond for unexpected medical care; another waited for an inmate's relatives to secure a private bond before allowing him to be taken to a hospital, records show.
Sheriff's officials in Washington County, where Tidwell was in custody, have faced other lawsuits alleging improper use of medical bonds, including in the case of a woman who died of a stroke one day after being released from the county's jail in 2016. In that case, which was settled this year, an audio recording captured a top sheriff's office official asking jail staff to ensure the woman was released on a medical furlough, a method of release similar to a medical bond, before taking her to the hospital.
Nora Demleitner, a law professor at Washington and Lee University in Virginia who specializes in criminal sentencing, said medical bonds may violate inmates' rights and the way some sheriffs use them is "totally flawed."
"It's a stunning problem," she said. "When [inmates] file lawsuits, and rightly so, they should get civil compensation."
Demleitner added via email that the phenomenon is prevalent in a number of counties and entirely absent in others. AL.com and ProPublica have reviewed media reports of sheriffs pursuing medical bonds for inmates with medical crises in 25 states.
Alan Lasseter, a Birmingham-based attorney who has filed lawsuits over alleged police misconduct and jail health care issues, said sheriffs' reliance on medical bonds appears to be on the rise.
"It's only something I've been hearing about for about two years, maybe longer, but it's becoming more common and it's really starting to resonate with me that it's been happening more and more in Alabama," Lasseter said.
'They Are Responsible'
Marcus Echols said his daughter was 9 years old when he first learned that she was his child. Until then, the girl's mother had been collecting child support from another man who was eventually determined not to be her father, according to court records and Echols.
In 1998, a judge in Morgan County ordered Echols to pay more than $9,000 worth of back child support and interest in monthly payments of $500.
Over the ensuing years, Echols, who pays support on other children and has had trouble keeping a job, repeatedly failed to make the required payments. By November 2015, when he was arrested for contempt of court for failure to make child support payments, his debt totaled more than $50,000. He was booked into the Morgan County Jail in Decatur, a city in north Alabama.
Two months later, on Jan. 16, 2016, Echols suffered a heart attack inside his painted cinder-block cell.
For over half an hour, guards argued over whether he needed to be taken to the hospital, Echols, now 49, said.
They eventually took him to Huntsville Hospital. Several hours later, Echols said, he awoke from a procedure and was told by a doctor that he had needed three stents inserted because his heart had suffered extensive damage over the extended period of time between when he went into cardiac arrest and his arrival at the hospital. Medical records reviewed by AL.com and ProPublica confirm Echols' account of his condition and treatment.
The doctor also informed him that he had been officially released from Morgan County Sheriff's Office custody, Echols said.
Echols said he was glad to find out that he would be allowed to go home instead of back to jail, but when he received a bill less than two weeks later from Huntsville Hospital for the costs of his medical care, he learned that he was personally responsible for more than $80,000.
"I didn't get the bill until about a week after I got out of the hospital," Echols said. "It just showed up in the mail."
Echols said he never learned what mechanism the sheriff's office had used to release him from its custody, and none of the court records associated with his lawsuit provide any clarity.
"I didn't sign nothing. … When I woke up," he said, "the doctor told me that the sheriff's office had told him to tell me that I had been released from jail."
A local charitable foundation ultimately paid Echols' bills. But he still feels that he was taken advantage of.
"It seems like a scam that they're running. They're running the jail at the lowest possible cost at the expense of everyone else."
Ana Franklin, who was sheriff at the time of Echols' incarceration and hospitalization, declined to comment on Echols' experience. But she said her "first consideration in whether or not to release someone on a medical release was never the budget." She said the primary factors that drove such determinations when she was sheriff included criminal history, risk of reoffense and whether the jail was equipped to provide adequate medical care.
"It's great to just say the sheriffs cut them loose because it saves them money on their medical," said Franklin, who pleaded guilty last year to a federal charge of failing to file an income tax return. "But it's just as big a liability issue that an inmate is going to say that we didn't provide adequate treatment for them in the jail as it is that he's going to sue us and say we cut him loose and they had to pay their medical bills."
In March 2016, just a few weeks after Echols' heart attack, the sheriff's office attempted to obtain a new warrant to arrest him for contempt of court for his continued failure to pay the thousands of dollars worth of back child support he still owed.
Morgan County District Judge Charles B. Langham issued an order stating that Echols "is still under medical care" — he was attending cardiac rehab sessions at the time — and denied the sheriff's office's request. A year later, Langham issued an order for a new warrant for Echols' arrest. At the time, Echols was unable to work, had applied for federal disability and was living with relatives.
Echols' sister, Lashundra Craig, said she takes issue with the sheriff's office's persistent attempts to arrest her brother despite his continuing health issues.
"They are responsible for whatever happens to the inmates. … If they don't want to be responsible for the medical costs but they want to put you back in jail to face your responsibility, to me it's showing they just still want their money," she said.
'They Said They Would Release Me'
It has historically been difficult for inmates to prevail in lawsuits alleging that sheriffs violated their rights by releasing them while they required medical attention.
On July 3, 1996, four inmates beat Leroy Owens with a metal pipe; stabbed him with a screwdriver; kicked, stomped and punched him; and left him in a pool of blood in a common room on the second floor of the Butler County Jail in Alabama's Black Belt.
Owens described the events of that evening in a recent interview, and they are laid out in detail in the records of the federal court case he and a fellow inmate who was also beaten would later file against then-sheriff Diane Harris, the county and the county commission in Alabama's Middle District in Montgomery.
For nearly an hour, no one answered Owens' cries for help or those of other inmates who banged on the jail's walls, one of whom yelled, "They're killing him up here," according to the court records.
Finally, Harris' chief deputy, Phillip Hartley, was called to the jail. Twenty minutes after the attack ended, Owens was taken downstairs and then driven to a nearby hospital, where he was treated for his injuries.
The hospital released Owens into the custody of two sheriff's deputies, who were given a discharge document detailing "specific procedures to care for Owens's head wounds and other injuries. It instructed them to monitor his level of consciousness, pupils, vision, and coordination, and to call the hospital immediately if any change occurred," according to a summary of Owens' allegations included in the U.S. Court of Appeals for the 11th Circuit's ruling on the appeal of his federal case.
Instead, after they arrived at the jail, Hartley insisted that the bloodied inmate sign a bond granting his release, according to Owens and the court records.
"I signed out of the jail. All I know is it was a piece of paper I signed. I was bleeding and I was coming in and out of consciousness," Owens, who is now 56, said last month. "They said they would release me if I signed it."
After Owens signed the bond, Hartley drove him almost to the county line and dropped him off at about 3:30 a.m. on July 4, 1996, on the side of a desolate stretch of highway, without shoes, according to Owens and the court records.
"When he released me from the jail, he took me to the edge of the county and he said, 'Your best bet is to leave town,'" Owens recalled.
After spending the night in a hotel, Owens awoke "in terrible pain" and was taken by ambulance back to the emergency room, according to the court records. He returned to the hospital again on July 8 for further treatment, the court records show.
Medicaid ultimately paid the hospital bills Owens incurred after he was bonded out from the jail.
Danny Bond, the current sheriff of Butler County, did not respond to repeated requests for comment.
In 2001, the 11th Circuit reinstated Owens' case against the county, the sheriff and others after a lower court had dismissed it. The court ruled that though Owens and the other inmate did not prove that Harris or the county were deliberately indifferent to their medical needs, they "sufficiently stated a claim against the County and the Sheriff for the conditions at the Butler County Jail." The court, however, also found that Harris was "entitled to immunity for her policy of releasing sick and injured inmates."
Judge Rosemary Barkett, writing for a four-judge minority, disagreed, saying that the allegations of deliberate indifference against Harris should not be dismissed. Barkett wrote that Harris and her staff should have known that releasing Owens and leaving him on the side of the road after 3 a.m. could be a constitutional violation.
Harris and the county denied wrongdoing; Owens and the other inmate plaintiff ultimately settled the suit.
Meanwhile, legal experts who reviewed relevant portions of Alabama's state code said they were able to find only two vague references to the issue: a statement that certain fees shall not be assessed "if a person is released on judicial public bail or on personal recognizance for a documented medical reason" and a stipulation that "the sheriff or jailer, at the expense of the county," must provide "necessary medicines and medical attention to those who are sick and injured, when they are unable to provide them for themselves."
Despite that, some lawyers and experts say inmates often have a hard time winning cases against sheriffs on those grounds.
"If a county sheriff threw someone out of the jail who's unconscious and said 'good luck,' you could possibly make a civil rights violation or negligence claim," said Paul Saputo, a Dallas-based criminal defense attorney who has represented multiple clients who have been bonded out of jail for medical reasons.
"If you have a heart attack and are taken to a hospital, and the question at the end of the day is who's gonna pay for it, that's a little bit closer of a call."
'They're Technically Still in Custody'
Lauderdale County, in Alabama's northwest corner, has taken official action to expand the use of medical bonds.
During its April 25, 2017, meeting, the Lauderdale County Commission agreed to enter into a contract with a Tennessee company to provide ankle monitors and monitoring services for inmates who are permitted to leave the county's jail to obtain expensive medical treatments.
Lauderdale County District Attorney Chris Connolly explained the concept during a discussion of the ankle monitor plan earlier that month, as Florence's Times Daily newspaper reported at the time.
"Putting them on an ankle monitor and then releasing them on medical furlough or a recognizance bond would still allow us to have control of them, but also it would make them responsible for any medical treatment or expense," Connolly said.
The new approach to reducing the jail's medical costs has been used 12 to 15 times since the contract was signed, Singleton, the Lauderdale County sheriff, said in a telephone interview last month.
"I guess you'd consider it like house arrest," he said. "They're technically still in custody" and must immediately return to the jail once they are deemed healthy enough to do so. But instead of adding to the $500,000 of medical care the jail averaged annually as of 2017, the inmates must pay the bill. That means the program has been a success, according to Singleton.
"It's accomplished what we wanted to accomplish," he said. "It's saved us some money."
Singleton also emphasized that the program does not affect public safety because ankle monitors are only used in cases involving nonviolent inmates who are not considered threats to the community.
Lauderdale County District Judge Carole Medley, who rules on small-time criminal cases nearly every day in her courtroom, said she often grants bonds so inmates can obtain medical care, which they must then pay for themselves. She said that she is "very pro-ankle monitor," and that she considers the program "a win-win" for inmates and for the jail and the county's finances.
"I release people on [own recognizance] bonds every other week for medical issues. Do I take into consideration the charge? Of course. And there are times where we release them on an ankle monitor to get their medical needs addressed, and then some of them do return to jail."
Critics of the practice say it raises important questions about the very purpose of incarceration. For instance, if sheriffs and other officials claim that these inmates must be jailed to prevent them from harming others, punish them for wrongdoing and deter would-be criminals, why are those officials so quick to abandon those goals in order to avoid paying their medical bills?
Jasmine Heiss, a campaign director at the Vera Institute of Justice in New York, said if such inmates can in fact be safely released when doing so saves tax dollars, perhaps they shouldn't have been incarcerated in the first place.
"Broadly, what we would like to see is people who can be safely released on their own recognizance being released earlier in the process rather than waiting until people have these severe medical crises," Heiss said.
Research reporter Claire Perlman contributed to this report.
After an investigation by MLK50 and ProPublica, Methodist Le Bonheur Healthcare is erasing debt for unpaid hospital bills owed by more than 6,500 patients. Our reporting found the hospital had profited by aggressively pursuing patients who couldn't pay.
This article was first published on Tuesday, September 24, 2019 in Propublica, andwas produced in partnership with MLK50, which is a member of the ProPublica Local Reporting Network
MEMPHIS, Tenn. — The city's largest nonprofit hospital system has erased the debts owed by more than 6,500 patients it sued for unpaid hospital bills, less than two months after announcing an overhaul of its debt collection processes.
The dramatic shift was prompted by an MLK50-ProPublica investigation that revealed that Methodist Le Bonheur Healthcare filed more than 8,300 debt lawsuits from 2014 through 2018, including against its own employees. Methodist had doggedly pursued low-income defendants who had little ability to pay, often garnishing their meager paychecks.
The single-page "case satisfied" notices filed by Methodist are coming into the Shelby County General Sessions Court faster than staff can process them. A court administrator estimated a backlog of about 4,500 Methodist notices waiting to be entered into the court's system.
From July 30 through Tuesday, the court had logged more than 2,300 notices submitted by the hospital system that wiped away patients' debts. That's more than nine times the number of notices filed by Methodist in the first six months of 2019.
For now, it appears that Methodist is no longer using the courts as a collection agency, a practice that was roundly criticized by health care experts, some elected officials and members of the United Methodist Church, with which Methodist is affiliated. Since July 3, the hospital has not filed any new debt collection lawsuits or garnishment attempts.
Methodist's turnaround elated defendants and consumer advocates.
Among the defendants who no longer owe is Carrie Barrett, a part-time Kroger employee featured in one of the MLK50-ProPublica articles. Barrett's case began in July 2007, when a two-night stay at Methodist Bonheur Healthcare, where doctors performed a heart catherization, left her with a $12,019 bill. In 2010, Methodist sued her for more than $16,000, one-third of which was attorney's fees.
Over the years, thanks to interest and court costs, Barrett's debt climbed to more than $33,000. If she paid $100 per month as ordered by the court, she would be 90 by the time she paid it off.
Barrett said she received a call nearly two weeks ago from an administrator who said the hospital had reviewed her records. "He said, 'The balance is zero. ... I said, 'You don't know how good that sounds to my ears.'"
Jessica Curtis, a senior adviser at Community Catalyst, a national advocacy organization, has followed other nonprofit hospitals that have been the subject of similar media reports.
"I was trying to remember when have I seen such a rapid switch," Curtis said. "I don't know that I've seen that before. The scale of what they are attempting to rectify is really commendable from what we've seen thus far."
Because the case satisfied notices do not include the amount owed, the total dollar amount of debt Methodist forgave could not immediately be quantified. Methodist did not immediately respond to requests for comment.
Nonprofit hospitals are generally exempt from local, state and federal taxes. In return, the federal government expects them to provide a significant community benefit, including charity care and financial assistance.
Methodist, which operates five hospitals in Shelby County, does provide some charity care — but experts faulted it for its aggressive collections practices in a city where nearly 1 in 4 residents live below the poverty line.
Its handling of poor patients began with a financial assistance policy that, unlike many of its peers around the country, all but ignored patients with any form of health insurance, no matter their out-of-pocket costs. If they were unable to afford their bills, patients then faced what experts said is rare: A licensed collection agency owned by the hospital.
Lawsuits followed. Finally, after the hospital won a judgment, it would repeatedly try to garnish patients' wages, which it did in a far higher share of cases than other nonprofit hospitals in Memphis.
Methodist repeatedly refused to make its executives available for interviews, but it sent statements defending itself, noting how it is the only health care system that has hospitals in all four quadrants of Shelby County and that it provided more than $226 million in community benefit. It did not address why its financial assistance policy was less generous than those of its peers or why it garnished wages in a higher percentage of cases than other hospitals.
But on June 30, three days after the MLK50-ProPublica investigation was published, Methodist CEO Michael Ugwueke said in a column published in The Commercial Appeal that the hospital would spend the next 30 days reviewing its collections and financial assistance policies.
Days later, Methodist announced it would suspend court collection activities over unpaid hospital bills. In the weeks that followed, the hospital's attorney, R. Alan Pritchard, dropped dozens of suits that had been on the court docket.
On July 30, the hospital announced wide-reaching reforms. "We were humbled to learn that while there's so much good happening across our health system each day, we can and must do more," Ugwueke said in a media conference call.
Under the new policy, financial assistance will be provided to patients earning up to 250% of the federal poverty line, or $53,325 for a family of three. The previous policy applied to uninsured patients with incomes up to 125% of the federal poverty line. Methodist said more than half of the population of greater Memphis would be eligible for assistance under the new policy.
The hospital also said it would no longer accept court-ordered interest on medical debt nor would it seek to collect attorney's fees or court costs from patients.
And it said it would raise its minimum wage to $13.50 an hour by mid-September and to $15 an hour by January 2021. The lowest-paid employees made $10 an hour and about 18% of workers earned less than $15 an hour, the hospital reported in response to MLK50's 2018 Living Wage Survey.
The pay increase signaled that Methodist took the issue seriously, Curtis said. "The inclusion of wages means someone has realized not just the symptom of the problem but the core root of the problem. This is a clearly promising start," she said.
It's unclear whether Methodist will resume suing patients for unpaid bills. And the hospital has not said how many additional "case satisfied notices" it could file. Plaintiffs cannot refile lawsuits after the case has been marked satisfied.
One of the defendants featured in the investigation was a Methodist housekeeper, who asked that her name not be used for fear that the hospital would fire her for talking to a reporter.
In 2017, Methodist sued her for the cost of hospital stays to treat chronic abdominal pain she experienced before the hospital hired her. She owed about $23,000, including around $5,800 in attorney's fees.
In January, a General Sessions Court judge ordered her to pay $75 biweekly. The housekeeper paid reliably until this summer, when she missed several days of work because she was sick, eventually ending up in the hospital. That left her paycheck short.
She received a small annual raise in August, and another to $13.50 less than two weeks ago
Last week, a reporter showed the housekeeper a copy of her case satisfied notice.
"God is a good God," she said, laughing and smiling. "I've been calling them and they tell me nothing. … This is a blessing right here."
Barrett, the Kroger employee featured in the first MLK50-ProPublica story, likewise praised God. At church this month, Barrett had an update for the congregation, which had heard her speak about her financial troubles before.
"I have a zero balance," she said. "I just want to thank God for blessings that he has brought to me. … I thank him for the victory!" she shouted, as others joined her in praise.
"Victory is ours, amen!" a minister said from the pulpit. "Don't y'all know that Jesus will drop those charges? Glory to God!"
To see if a case satisfied notice has been logged in your case, enter your seven-digit docket number in the CourtConnect online lookup system under "Display case information and activities." If your case has been satisfied, the last docket entry will say "Case Satisfied."
You can also enter your docket number into the court's civil online payment system, which will show the amount due.
Hundreds of computer servers worldwide that store patient X-rays and MRIs are so insecure that anyone with a web browser or a few lines of computer code can view patient records. One expert warned about it for years.
This article was first published on Tuesday, September 17, 2019 in ProPublica.
Medical images and health data belonging to millions of Americans, including X-rays, MRIs and CT scans, are sitting unprotected on the internet and available to anyone with basic computer expertise.
The records cover more than 5 million patients in the U.S. and millions more around the world. In some cases, a snoop could use free software programs — or just a typical web browser — to view the images and private data, an investigation by ProPublica and the German broadcaster Bayerischer Rundfunk found.Bottom of Form
We identified 187 servers — computers that are used to store and retrieve medical data — in the U.S. that were unprotected by passwords or basic security precautions. The computer systems, from Florida to California, are used in doctors' offices, medical-imaging centers and mobile X-ray services.
The insecure servers we uncovered add to a growing list of medical records systems that have been compromised in recent years. Unlike some of the more infamous recent security breaches, in which hackers circumvented a company's cyber defenses, these records were often stored on servers that lacked the security precautions that long ago became standard for businesses and government agencies.
"It's not even hacking. It's walking into an open door," said Jackie Singh, a cybersecurity researcher and chief executive of the consulting firm Spyglass Security. Some medical providers started locking down their systems after we told them of what we had found.
Our review found that the extent of the exposure varies, depending on the health provider and what software they use. For instance, the server of U.S. company MobilexUSAdisplayed the names of more than a million patients — all by typing in a simple data query. Their dates of birth, doctors and procedures were also included.
Alerted by ProPublica, MobilexUSA tightened its security last week. The company takes mobile X-rays and provides imaging services to nursing homes, rehabilitation hospitals, hospice agencies and prisons. "We promptly mitigated the potential vulnerabilities identified by ProPublica and immediately began an ongoing, thorough investigation," MobilexUSA's parent company said in a statement.
Another imaging system, tied to a physician in Los Angeles, allowed anyone on the internet to see his patients' echocardiograms. (The doctor did not respond to inquiries from ProPublica.)
All told, medical data from more than 16 million scans worldwide was available online, including names, birthdates and, in some cases, Social Security numbers.
Experts say it's hard to pinpoint who's to blame for the failure to protect the privacy of medical images. Under U.S. law, health care providers and their business associates are legally accountable for securing the privacy of patient data. Several experts said such exposure of patient data could violate the Health Insurance Portability and Accountability Act, or HIPAA, the 1996 law that requires health care providers to keep Americans' health data confidential and secure.
Although ProPublica found no evidence that patient data was copied from these systems and published elsewhere, the consequences of unauthorized access to such information could be devastating. "Medical records are one of the most important areas for privacy because they're so sensitive. Medical knowledge can be used against you in malicious ways: to shame people, to blackmail people," said Cooper Quintin, a security researcher and senior staff technologist with the Electronic Frontier Foundation, a digital-rights group.
"This is so utterly irresponsible," he said.
The issue should not be a surprise to medical providers. For years, one expert has tried to warn about the casual handling of personal health data. Oleg Pianykh, the director of medical analytics at Massachusetts General Hospital's radiology department, said medical imaging software has traditionally been written with the assumption that patients' data would be secured by the customer's computer security systems.
But as those networks at hospitals and medical centers became more complex and connected to the internet, the responsibility for security shifted to network administrators who assumed safeguards were in place. "Suddenly, medical security has become a do-it-yourself project," Pianykh wrote in a 2016 research paper he published in a medical journal.
ProPublica's investigation built upon findings from Greenbone Networks, a security firm based in Germany that identified problems in at least 52 countries on every inhabited continent. Greenbone's Dirk Schrader first shared his research with Bayerischer Rundfunk after discovering some patients' health records were at risk. The German journalists then approached ProPublica to explore the extent of the exposure in the U.S.
Schrader found five servers in Germany and 187 in the U.S. that made patients' records available without a password. ProPublica and Bayerischer Rundfunk also scanned Internet Protocol addresses and identified, when possible, which medical provider they belonged to.
ProPublica independently determined how many patients could be affected in America, and found some servers ran outdated operating systems with known security vulnerabilities. Schrader said that data from more than 13.7 million medical tests in the U.S. were available online, including more than 400,000 in which X-rays and other images could be downloaded.
The privacy problem traces back to the medical profession's shift from analog to digital technology. Long gone are the days when film X-rays were displayed on fluorescent light boards. Today, imaging studies can be instantly uploaded to servers and viewed over the internet by doctors in their offices.
In the early days of this technology, as with much of the internet, little thought was given to security. The passage of HIPAA required patient information to be protected from unauthorized access. Three years later, the medical imaging industry published its first security standards.
Our reporting indicated that large hospital chains and academic medical centers did put security protections in place. Most of the cases of unprotected data we found involved independent radiologists, medical imaging centers or archiving services.
One German patient, Katharina Gaspari, got an MRI three years ago and said she normally trusts her doctors. But after Bayerischer Rundfunk showed Gaspari her images available online, she said: "Now, I am not sure if I still can." The German system that stored her records was locked down last week.
We found that some systems used to archive medical images also lacked security precautions. Denver-based Offsite Image left open the names and other details of more than 340,000 human and veterinary records, including those of a large cat named "Marshmellow," ProPublica found. An Offsite Image executive told ProPublica the company charges clients $50 for access to the site and then $1 per study. "Your data is safe and secure with us," Offsite Image's website says.
The company referred ProPublica to its tech consultant, who at first defended Offsite Image's security practices and insisted that a password was needed to access patient records. The consultant, Matthew Nelms, then called a ProPublica reporter a day later and acknowledged Offsite Image's servers had been accessible but were now fixed.
"We were just never even aware that there was a possibility that could even happen," Nelms said.
In 1985, an industry group that included radiologists and makers of imaging equipment created a standard for medical imaging software. The standard, which is now called DICOM, spelled out how medical imaging devices talk to each other and share information.
We shared our findings with officials from the Medical Imaging & Technology Alliance, the group that oversees the standard. They acknowledged that there were hundreds of servers with an open connection on the internet, but suggested the blame lay with the people who were running them.
"Even though it is a comparatively small number," the organization said in a statement, "it may be possible that some of those systems may contain patient records. Those likely represent bad configuration choices on the part of those operating those systems."
Meeting minutes from 2017 show that a working group on security learned of Pianykh's findings and suggested meeting with him to discuss them further. That "action item" was listed for several months, but Pianykh said he never was contacted. The medical imaging alliance toldProPublica last week that the group did not meet with Pianykh because the concerns that they had were sufficiently addressed in his article. They said the committee concluded its security standards were not flawed.
Pianykh said that misses the point. It's not a lack of standards; it's that medical device makers don't follow them. "Medical-data security has never been soundly built into the clinical data or devices, and is still largely theoretical and does not exist in practice," Pianykh wrote in 2016.
ProPublica's latest findings follow several other major breaches. In 2015, U.S. health insurer Anthem Inc. revealed that private data belonging to more than 78 million people was exposed in a hack. In the last two years, U.S. officials have reported that more than 40 million people have had their medical data compromised, according to an analysis of records from the U.S. Department of Health and Human Services.
Joy Pritts, a former HHS privacy official, said the government isn't tough enough in policing patient privacy breaches. She cited an April announcement from HHS that lowered the maximum annual fine, from $1.5 million to $250,000, for what's known as "corrected willful neglect" — the result of conscious failures or reckless indifference that a company tries to fix. She said that large firms would not only consider those fines as just the cost of doing business, but that they could also negotiate with the government to get them reduced. A ProPublica examination in 2015 found few consequences for repeat HIPAA offenders.
A spokeswoman for HHS' Office for Civil Rights, which enforces HIPAA violations, said it wouldn't comment on open or potential investigations.
"What we typically see in the health care industry is that there is Band-Aid upon Band-Aid applied" to legacy computer systems, said Singh, the cybersecurity expert. She said it's a "shared responsibility" among manufacturers, standards makers and hospitals to ensure computer servers are secured.
"It's 2019," she said. "There's no reason for this."
How Do I Know if My Medical Imaging Data is Secure?
If you are a patient:
If you have had a medical imaging scan (e.g., x-ray, CT scan, MRI, ultrasound, etc.) ask the health care provider that did the scan — or your doctor — if access to your images requires a login and password. Ask your doctor if their office or the medical imaging provider to which they refer patients conducts a regular security assessment as required by HIPAA.
If you are a medical imaging provider or doctor's office:
Researchers have found that picture archiving and communication systems (PACS) servers implementing the DICOM standard may be at risk if they are connected directly to the internet without a VPN or firewall, or if access to them does not require a secure password. You or your IT staff should make sure that your PACS server cannot be accessed via the internet without a VPN connection and password. If you know the IP address of your PACS server but are not sure whether it is (or has been) accessible via the internet, please reach out to us at medicalimaging@propublica.org.
This story was co-reported with the German public broadcaster Bayerischer Rundfunk.
Doris Burke contributed reporting. Additional reporting by Hakan Tanriverdi, Maximilian Zierer, Steffen Kühne and Oliver Schnuck of Bayerischer Rundfunk.
Across the country, low-income patients are overcoming stigmas surrounding poverty to speak out about nonprofit hospitals that sue them. Federal officials are noticing.
This article was first published on Friday, September 13, 2019 in ProPublica. It was produced in partnership with MLK50, which is a member of the ProPublica Local Reporting Network.
Over the past few months, several hospitals have announced major changes to their financial assistance policies, including curtailing the number of lawsuits they file against low-income patients unable to pay their medical bills.
Investigative reports have spurred the moves, and they prompted criticism from a top federal official.
"We are learning the lengths to which certain not-for-profit hospitals go to collect the full list price from uninsured patients," Seema Verma, the administrator of the Centers for Medicare and Medicaid Services, told board members of the American Hospital Association on Tuesday, according to published remarks. "This is unacceptable. Hospitals must be paid for their work, but it's actions like these that have led to calls for a complete Washington takeover of the entire health care system."
In June, ProPublica published a story with MLK50 on the Memphis, Tennessee-based nonprofit hospital system Methodist Le Bonheur Healthcare. It brought more than 8,300 lawsuits against patients, including dozens against its own employees, for unpaid medical bills over five years. In thousands of cases, the hospital attempted to garnish defendants' paychecks to collect the debt.
After our investigation, the hospital temporarily suspended its legal actions and announced a review. That resulted in the hospital raising its workers' wages, expanding its financial assistance policy and announcing that it would not sue its lowest-income patients. "We were humbled," the hospital's CEO, Michael Ugwueke,told reporters.
The same month, NPRreported that Virginia's nonprofit Mary Washington Hospital was suing more patients for unpaid medical bills than any hospital in the state. Dr. Marty Makary, a surgeon at Johns Hopkins University, and fellow researchers had documented 20,000 lawsuits filed by Virginia hospitals in 2017 alone. The research team found that nonprofit hospitals more frequently garnished wages than their public and for-profit peers.
In mid-August, The Oklahoman reported that dozens of hospitals across the state had filed more than 22,250 suits against former patients since 2016. Saint Francis Health System, a nonprofit that includes eight hospitals, filed the most lawsuits in the three-year span.
In the first week of September, The New York Timesreported that Carlsbad Medical Center in New Mexico had sued 3,000 of its patients since 2015. That report was also based on findings from Makary, who just published the book "The Price We Pay: What Broke American Health Care — and How to Fix It."
And this week, Kaiser Health News and The Washington Post chronicled how Virginia's state-run University of Virginia Health System sued patients more than 36,000 times over a six-year span.
There is no federal law mandating that nonprofit hospitals provide a specific amount of charity care, nor is there readily accessible data measuring how aggressively each hospital pursues patients for unpaid bills. But consumer advocates say the revelations in recent coverage on hospitals' litigation practices are troubling.
"It's dismaying to see how common it is," said Jenifer Bosco, an attorney with the National Consumer Law Center who helped craft a Model Medical Debt Protection Act.
Nearly half of the nation's 6,200 hospitals are nonprofits, meaning they are exempt from paying most local, state and federal taxes in return for providing community benefits.
But the issue of nonprofit hospitals engaging in aggressive debt collection practices that push the very communities they are designed to assist into poverty isn't new.
In 2003, The Wall Street Journal detailed how Yale-New Haven Hospital in Connecticut had pursued a patient's widow to pay off his late wife's 20-year-old medical bills. The hospital canceled the debt following the article.
"Some of these things are really outrageous," said Jessica Curtis, a policy expert with Community Catalyst who helped draft billing protections for patients in the Affordable Care Act. "There are really aggressive tactics being used and little consideration or understanding for how those tactics actually impact people."
Grassley, chairman of the Senate Finance Committee, sent a letter to the commissioner of the Internal Revenue Service in February to renew his inquiries into whether nonprofit hospitals provide sufficient community benefits to qualify for tax breaks.
Since publishing our story on Methodist hospital in Memphis, we've continued to work with communities in the city to better understand the toll these lawsuits are taking.
We've learned from our reporting that, because of the stigma around owing money, people who've been sued sometimes don't want to discuss it with a reporter. So we've tried to reach people in several ways, including letters sent in the mail, flyers posted in spots they might frequent and graphics we're sharing on Facebook. We're learning a bit more every day about what resonates with the community, and we hope to report back on that soon.
In the meantime — and we tell this to every person we can — these stories are stronger and more accurate when people who've been sued share their experiences with us. Hearing from more people who have been sued can help us hold more institutions accountable.
If you've been sued by a nonprofit hospital or physician group, we want to hear from you. If you work or have worked for an organization that takes unusually aggressive legal action against people unable to pay, we'd also like to hear from you.
To protect their networks and bottom lines, health insurers don't aggressively pursue widespread fraud, making it easy for scammers. Then they pass the costs off to consumers.
This article was first published on Tuesday, September 10, 2019 in ProPublica.
Like most of us, William Murphy dreads calling health insurance companies. They route him onto a rollercoaster of irrelevant voice menus, and when he finally reaches a human, it's a customer service rep who has no idea what he's talking about. Then it can take days to hear back, if anyone responds at all.
The thing is, Murphy isn't a disgruntled patient. He prosecutes medical fraud cases for the Alameda County District Attorney's Office in Oakland, California. And when he calls insurers, he's in pursuit of criminals stealing from them and their clients. But, he said, they typically respond with something akin to a shrug. "There's no sense of urgency, even though this is their company that's getting ripped off."
It's not just Murphy. I called health care fraud prosecutors across California to ask what insurers were doing to help bring cases against those plundering health care dollars. More than one simply burst out laughing. "Not much," one prosecutor said.
It seems counterintuitive. Escalating health care costs are one of the greatest financial concerns in the United States. And an estimated 10% of those costs are likely eaten up by fraud, experts say. Yet private health insurers, who preside over some $1.2 trillion in spending each year, exhibit a puzzling lack of ambition when it comes to bringing fraudsters to justice.
Like much of what happens behind the scenes in the health insurance industry, the insurers' tepid response to fraud typically goes unexamined. But this year, I dove into the crazy tale of a Texas personal trainer who didn't have a medical license but was easily able to claim he was a doctor and bill some of the nation's most prominent health insurers for four years — walking away with $4 million. David Williams, who was also a convicted felon, discovered stunning weaknesses in the system: that when he applied for a National Provider Identifier, the number required to bill health insurance plans, no one would verify whether he was a doctor; and that when he billed insurers as an out-of-network "doctor," they wouldn't check either and would keep paying him even long after they learned of his fraud. He was later convicted of health care fraud and is now in federal prison.
Williams' scam raised the eyebrows of even my most jaded health care sources. It prompted a half-dozen Democratic senators to write to the federal agency that administers the NPIs and ask what it was doing to plug the "loopholes."
But it also got me thinking: As journalists, we are peppered with press releases touting the fraud enforcement successes in Medicare and Medicaid, the government health plans. The federal Department of Justice and state Medicaid Fraud Control Units file thousands of criminal and civil cases a year (and still are accused of not being as aggressive as they could be). Clearly, their goal is to let folks know they will be prosecuted.
But we rarely hear about the fraud enforcement efforts of private health insurers. These companies manage the plans of about 150 million Americans who get their health benefits through their employers. They're sitting on a massive trove of claims data that can help identify scammers, and problems are routinely flagged by their members. And experts, including investigators who once worked for the insurers, tell me there's rampant fraud against the private plans.
The bottom line is significant: If a con artist, or a corrupt medical professional, makes off with health care dollars, those losses are not necessarily the insurers'. They will be passed on to people covered by the plans in the form of higher monthly premiums and out-of-pocket costs as well as reduced benefits.
So, what's up?
I wasn't going to find out from the insurers. Aetna, Cigna, UnitedHealthcare and others ignored or refused my many requests to interview their fraud investigators or responded with assurances about their fraud-fighting efforts, with few specifics.
A United spokesperson said I couldn't speak to a fraud investigator because "we do not want to make information public that would make it easier for those intent on engaging in fraud to commit these crimes." She said the insurer uses analytics to flag potentially fraudulent billing and, in some cases, physically verifies that medical offices exist.
With that scant response, I plunged into the daunting thicket of agencies that are supposed to oversee the fight against health care fraud, each divided by region and responsibility. I contacted insurance regulators in every state and interviewed more than 50 other experts, including prosecutors, claims analysts and a dozen former investigators for the internal fraud units of private insurers.
What I found has troubling implications, especially for employers and workers who get their health plans through the big insurers. Far from being fierce guardians of your health care dollars, experts told me, the big-name insurers — who sell their own plans or are paid to manage employers' — pick and choose their battles. And, for a variety of reasons, fraud is not a top priority.
California is known for sunshine, surf and health care scams. It's so rife with suspicious bills and kickbacks that the feds based a Medicare Fraud Strike Force in its ground zero for schemes, Los Angeles. The state's Medicaid Fraud Control Unit in the attorney general's office is among the busiest in the nation.
With almost 40 million residents, California is also one of the largest markets for commercial health insurance in the country. Commercial health insurers covered about 14.4 million Californians in 2018. If there's anywhere private health insurers should be beating back fraud, flagging suspicious cases and referring fraudsters to the authorities, it's the Golden State.
Like any rip-off, there are two ways to publicly hold perpetrators accountable and deter others: Prosecute them or sue to recoup the money. I called the district attorneys' offices in California's 14 largest counties, which cover about 80% of the state's population, or 32 million people. How often, I asked, did a fraud case referred by a commercial health insurer lead to criminal charges in 2017 and 2018?
All told, prosecutors in those counties filed charges in just 22 such cases in the two years.
To put that record in context, take a look at the state's Medicaid program, which covers about 13 million low-income people. During fiscal 2017 and 2018, the program's fraud unit filed criminal charges against 321 fraudulent medical providers. It garnered 65 civil settlements and judgments and recovered more than $93 million, according to the state attorney general's office.
A rigorous search for civil lawsuits filed by private health insurers over fraud in California turned up just one case in 2017 and 2018. Experts said insurers rarely sue over fraud because of the high cost of litigation.
I asked the commercial insurers in California for the case numbers of any civil lawsuits they'd filed in those years. Most didn't respond. United said it had filed "more than a dozen civil arbitrations and lawsuits across the country" over "the past couple of years." It included a list of four lawsuits in which the company won, or is seeking, tens of millions of dollars from medical providers. That's not reassuring. United is a behemoth with more than $226 billion in revenue in 2018. Yet it only rarely pursued reimbursement in court.
I called up a former federal fraud prosecutor who'd worked with both Medicare and private insurers. He said my calls to the prosecutors exposed alarming differences in the way fraud is enforced in the private and government health plans. The Medicaid fraud units are "staffed and actively engaged," said Michael Elliott, who ran about 100 fraud investigations when he worked for the Department of Justice in Texas from 2008 to 2015.
Private insurers, he said, simply don't make fraud enforcement a big enough part of their mission. "At the end of the day, it shows their priorities are elsewhere," he said.
Jennifer Lentz Snyder, who heads health care fraud prosecutions for the Los Angeles County District Attorney's Office, said insurers should be grateful she's pursuing fraudsters. But she said that when she asks for even basic information, like the number of times patients were treated at a location, they make it difficult.
"They want us, a criminal agency, to submit questions to their civil lawyers, to examine if there's a 'problem' with the questions," Snyder said. "It suggests we are not on the same page in terms of enforcement and protecting the integrity of the system."
I wondered if perhaps private insurers worked better with egulators, whom they are bound by law to obey.
Michael Marben quickly quashed that notion. Marben, director of the Commerce Fraud Bureau in Minnesota, suspects health insurers in his state are breaking the law. They are required to send his office any case where they have a "reasonable belief" there's been fraud. That allows his office to spot trends, assist with investigations and warn other insurers.
In 2017, insurers in the state referred just two cases of suspected fraud. In 2018, they referred five.
That's not because everyone there is "Minnesota nice." During the same time period, the state's Medicaid fraud unit conducted 596 investigations and netted 134 indictments.
And it wasn't an issue of the profit-driven sector not wanting to cooperate with regulators. In the auto insurance market, for example, the state's Fraud Bureau had more than 2,200 referrals, most of them from insurers.
There's "conscious underreporting" by health insurers, Marben said. "You can't have a company that doesn't experience fraud."
The public doesn't realize that the unregulated fraud has a cost, he said. "This has a direct impact on consumers."
Fraud involving the programs of private insurers has long been flagged as a problem. About three dozen states have similar reporting requirements, based on model legislation developed in the 1990s by the Coalition Against Insurance Fraud. The laws require all insurers to notify state regulators about potential scams. But no one seems to believe the health insurers actually do. "Everyone I visit says the same thing. In some states they receive basically no referrals from health insurers," said Dennis Jay, executive director of the coalition, a nonprofit group of private insurers, government agencies and consumer groups that fights fraud.
Incompetence may also be part of the problem. The California Department of Insurance found in recent audits that the investigators for two major health insurers needed more training because they "missed opportunities" for identifying what the auditors thought could be fraud, an official told me.
But as I began calling around, the dearth of cases was truly remarkable. What was happening to people who were defrauding the insurers? What was happening to the doctors billing for services they didn't provide? And who was watching the money?
Georgia regulators said only three of the state's top 10 health insurers reported any suspected fraud cases in 2017 and 2018.
The Arizona Department of Insurance got 32 referrals in 2017. That seemed low, so the regulator reminded the companies about its fraud reporting law. The next year the number more than quadrupled to 133. Paul Hill, the department's chief law enforcement officer, speculated that companies don't report fraud because they "don't want the publicity."
In Washington, the Office of the Insurance Commissioner only got one report in 2017 from Premera Blue Cross, one of the state's largest insurers. A Premera official told me the company doesn't report potential fraud unless it finds criminal intent. Instead it deals with most cases internally as "abusive billing," which means the company "educates" the perpetrators. Only if the billing issues continue does it become suspected fraud.
Apparently, Premera is a great educator. The company's investigations have led to only one fraud conviction since 2014, the official said.
Steve Valandra, a spokesman for the Washington regulator, doesn't buy the Premera official's explanation for the low number of referrals. The state's reporting law doesn't say insurers have to prove intent to refer a case, he said. It says they need to report any case where they have a "reasonable belief" there may be fraud.
Jay, director of the fraud-fighting coalition, said regulators need to use their authority to crack down on the insurers who don't report suspected fraud. "Fine them," he said.
States only regulate the fully insured health plans, in which people pay monthly premiums and the insurer pays their bills. But more than half of working Americans are covered under self-funded plans, in which their employer is paying the bills and hires an administrator, typically an insurance company, to run things.
Self-funded plans are regulated by the federal Department of Labor, but it barely looks at fraud. The Labor Department oversees plans covering tens of millions of people, but it opened just 359 health-related criminal cases in 2017 and 2018 and filed charges in 185, a spokesman said in an email.
The Department of Justice, which oversees the FBI and federal prosecutors, also investigates and prosecutes fraud in employer-sponsored health plans. But its spokesman said it doesn't track how many cases involve commercial health plans.
Elliott, the former federal fraud prosecutor, said the Justice Department is more focused on policing fraud against the government health plans. When he was a federal prosecutor in North Texas, Elliott said he had about 15 cases involving government plans for every one involving a private one.
When private insurers pitched the occasional case, Elliott said, prosecutors had to weigh whether the insurer would fully cooperate with the investigation. Federal prosecutors dig into the details when they get referrals, he said. They might want to broaden a case, which could create more work for the insurer, or sully its reputation. Or, prosecutors might find out the insurer was not doing its job. "Certain things they wanted you to know about and certain things they didn't want you to know about," he said.
The private insurers, Elliot said, seemed to prefer to close cases quietly, cutting off the fraudster and pursuing repayment. But, he said, that allows the scammer to go on cheating others. That's not fraud enforcement, he said. It's an "accounting mechanism."
I tracked down a dozen or so investigators who once worked for insurers, and they all said the same thing: Insurers don't police fraud as much as they could because it hurts the bottom line.
When Dan Bowerman worked as a medical director for Independence Blue Cross in Philadelphia, he said it was easy to spot apparent fraud. But Bowerman, who is a chiropractor as well as a fraud investigator and expert in billing codes, said it takes a lot of work to show criminal intent. A medical provider can say a staffer made an honest mistake, he said. Or a doctor could claim to be trying a novel treatment, a gray area that medical policies allow. And medical providers can also produce records, bogus or not, to substantiate claims, he said. "There are very few providers that willingly agree that they committed health care fraud," said Bowerman, who worked at the plan for about a decade, leaving in 2012, and is now semiretired.
Michael Crowley investigated fraud for more than a decade for three companies, including Humana and United. The flood of fraud was so great, he said, that investigators ignored suspect claims worth less than $300. Investigating those, the companies determined, would cost more than what they could recover, he said.
But those small claims add up. Williams, the personal trainer from Texas, billed insurers in increments of $300 and under for more than four years, and it added up to about $25 million. "If you're a provider, you're going to figure out that threshold real quick and stay under it," Crowley said.
Crowley and other investigators say targeting suspect medical providers and facilities puts the insurers in a dilemma. They need a certain number of doctors and hospitals in their networks to make plans attractive to employers. They also must ensure patients have access to the care they need.
So apparently, I learned, there's a calculation that goes on: If, for instance, you're the only neurologist in town, your fraud may be forgiven.
"Commercial payers have relationships they are trying to keep intact," said Jennifer Warren, who worked in payment integrity and fraud investigations for the insurance giants Optum, a subsidiary of United, and Cigna. She left the insurance industry in late 2017 to work for a vendor that helps employers reduce pharmacy spending.
At Optum, she said, the payment integrity team would require some suspect providers to provide records substantiating their claims. Or, she said, they would require everyone who billed for certain procedures to provide documentation. But if the providers complained enough, she'd be told to remove the hurdle. It's a balancing act, she said. "They don't want that provider out of the network, even though they're obviously billing incorrectly," she said.
Some insurers say they participate in a voluntary Medicare-led program called the Healthcare Fraud Prevention Partnership that analyzes claims data to look for fraud. But Medicare won't say which insurers had actually shared data, or whether that information had been used to help convict scammers.
Several former fraud investigators said the first step was always to school suspected fraudsters on their misbehavior. That means months of letters ending with the admonition: "Don't do this anymore." Meanwhile, the former investigators said, a river of suspicious bills flowed through the payment system.
"If you talk to anyone who works in the special investigation units and cares about what they're doing, they're frustrated," Warren said.
Louise Dobbe worked as an attorney for United and advised its fraud unit for more than a decade. She believes fraudsters know they are less likely to be prosecuted by private plans. Billing data showed that people cheating United on the commercial side played it straight with Medicare, said Dobbe, who left United in 2014 and stressed she is not speaking on its behalf.
If a doctor fleeces Medicare, the agency can block that person from billing it — a crushing blow. "We don't have the hammer on the private side or the commercial side that Medicare does," she said.
And Dobbe said referring cases to law enforcement is harder than it sounds. "They want it on a silver platter," she said. An insurer might have nailed a $3,000 claim as fraud "dead to rights," but the authorities will pass. "They want the bang for their buck," she said.
Snyder, the Los Angeles County prosecutor, said insurers rarely send her any cases, and there's no excuse. It is "incredibly easy to make a fraud report."
Private insurers, she said, weigh fraud enforcement by its "return on investment," when their priority should be the integrity of the health care system.
"The crime itself is stupid simple," she said. "You lie about something to get something you're not entitled to."
Downplaying its role in the opioid epidemic, Purdue Pharma has embraced a federal statistic showing it was a minor player in the pain pill market. But when we took drug potency into account, Purdue's importance soared.
This article was first published on Monday, September 9, 2019 in ProPublica.
Purdue Pharma has tried to refute accusations that it fueled the opioid crisis by arguing it was a small player in the U.S. market for prescription pain relievers. But a new ProPublica analysis of government data shows that the company, the maker of OxyContin, had a far bigger impact than it portrays.
Purdue's position rests on a Drug Enforcement Administration database, made public by a court order in July, which shows Purdue sold 3.3% of the prescription opioid pain pills in the U.S. from 2006 to 2012.
Last month, when Purdue moved to dismiss a lawsuit by the Massachusetts attorney general alleging that it had downplayed the addiction risk of its potent drug, the company highlighted the DEA statistic in a slide presentation. One slide was headlined: "Purdue makes a very small fraction of opioids nationally."
Company lawyer Timothy Blank told the judge, "The notion that Purdue has created this epidemic is a serious misconception."
The number promoted by Purdue, however, is an inadequate measure of market share and understates the company's role in the opioid epidemic, according to experts and the new ProPublica analysis. That's because the percentage of sales doesn't take the potency and dose of the pills into account. The analysis favored by Purdue treats every pain pill as the same, whether it is a 5 milligram Percocet or an 80 milligram OxyContin. It's analogous to measuring alcohol sales by equating a 12-ounce glass of 100 proof whiskey with a similar-sized can of light beer.
ProPublica analyzed the same data set touted by Purdue but accounted for the wide variation in strengths of prescription painkillers. Besides counting the number of pills sold, the analysis measured the amount and potency of opioid that they contained. Higher doses of opioids are associated with a greater risk of overdose.
On that basis, the market share of Purdue is 16% — about five times higher than the number cited by the company. That makes Purdue the third-largest seller of opioids from 2006 to 2012, behind generic pain pill makers Actavis Pharma and SpecGx, a subsidiary of Mallinckrodt.
"All opioids are not created equal," said Len Paulozzi, a former medical epidemiologist at the Centers for Disease Control and Prevention who researched prescription opioid overdose risk. He said it is important to adjust for potency because "the risk of an overdose, whether fatal or nonfatal, is directly related to the dosage a person receives."
Purdue's contention that it was a minor participant in the opioid painkiller market is both a legal and a public relations strategy. The company has been working to settle more than 2,000 lawsuits blaming it for helping to create the public health disaster, and also to protect the reputation and legacy of the Sackler family, its owners. Once praised for their philanthropy, the Sacklers have more recently been condemned by politicians and advocates for their stewardship of Purdue.
Settlement talks, which included a provision that the Sacklers contribute at least $3 billion of their own money, recently reached an impasse and Purdue is considering filing for bankruptcy, the Associated Press reported Saturday. The Sacklers have been separately sued by more than a dozen states, including Massachusetts and Connecticut, for their role in overseeing the company's allegedly illegal marketing of OxyContin.
Purdue has long experience at countering criticism of OxyContin. The first reports that people were abusing the drug surfaced two decades ago. Since then, Purdue has repeatedly argued that its flagship drug has done more good than harm. Even when Purdue pleaded guilty in 2007 in federal court to a criminal charge of illegally marketing OxyContin by downplaying addiction risks, it blamed misstatements by employees who didn't follow company directives. More recently, the company and representatives of the Sackler family have said that the opioid crisis is now driven by "illegal street drugs" such as heroin and fentanyl.
Purdue declined to comment on the ProPublica analysis.
By minimizing OxyContin's market share, the per-pill sales data that Purdue prefers also muffles the drug's outsized impact in certain states, especially in the Northeast. For example, Purdue's lawyer told the Massachusetts judge that the company sold just 4.6% of the prescription pain pills in the state from 2006 through 2012. But when the total amount of opioid ingredient in each pill is considered, Purdue's market share in the state is actually more than four times higher at 20.5%.
In some states, when sales are adjusted for potency, Purdue sold more painkiller medication than any other company: Purdue was the top seller in Rhode Island, with 31.2% of the opioid market, as well as in Connecticut, where it had 28.5%. In Ohio, which has consistently ranked among states with the highest rates of overdoses, Purdue had one-fifth of the market. In 13 states, Purdue was responsible for 20% or more of retail opioid painkiller sales.
The market share nationally of some companies dropped when potency was considered. SpecGx, which has 37.7% of the market on a per pill basis, fell to 29%. Actavis declined from 34.6% of the total pill market to 30.4% in the ProPublica analysis.
The analysis of the DEA data cited by Purdue was first done by The Washington Post. It partnered with the publisher of the Charleston Gazette-Mail in West Virginia in a joint legal action that prompted the release of the DEA database. The database, called Automation of Reports and Consolidated Orders System, or ARCOS, tracks every opioid pill sold in the country from manufacturer to distributor to pharmacy.
The Post limited its analysis to shipments of oxycodone and hydrocodone, which accounted for three-fourths of all pill shipments to pharmacies. ProPublica also restricted its analysis to the same two drug classes sold by retail outlets and practitioners because the numbers cited by Purdue in court are based on that methodology.
The reason Purdue's market share is significantly larger when measuring the amount of opioid ingredient sold is because OxyContin is formulated at strengths many times higher than most other pain pills.
When Oxycontin was unveiled in 1996, Purdue's marketing campaign touted it as providing longer pain relief while allowing patients to take fewer pills each day. To accomplish that, Purdue packed into each pill a large amount of opioid that was slowly released over a 12-hour period. Its largest dose, until it was taken off the market in 2001 amid safety concerns, was a 160 milligram pill.
Abusers quickly figured out how to crush OxyContin tablets and remove the opioid inside. Some snorted it, while others reduced it to liquid form and injected it.
In determining the amounts of opioid painkillers sold by Purdue and other manufacturers, ProPublica calculated a rate called morphine milligram equivalent, or MME, which is commonly used by public health agencies, including the Food and Drug Administration and the CDC.
The calculation standardizes different types of opioids to the same morphine equivalent. Hydrocodone, the opioid in Vicodin, has a potency that is equivalent to morphine. Oxycodone, the opioid in OxyContin, is one and a half times more potent than morphine. When converting to morphine equivalents, the amount of hydrocodone in a pill is multiplied by one, while oxycodone is multiplied by 1.5.
Using this formula, an 80 milligram pill of OxyContin has an MME of 120 while a 5 milligram Vicodin pill has an MME of 5.
The average total MME for a pill sold by Purdue in the DEA database was 61.5. By comparison, the average MME per pill sold by the largest manufacturer during this time frame, Actavis Pharma, was 11. For the second biggest manufacturer, SpecGx, it was even lower at 9.6 MME.
CDC guidelines advise against prescribing more than 90 MME per day. OxyContin users are typically directed by their doctors to take two pills per day. Based on the DEA database, the typical prescription from 2006 to 2012 would have totaled 123 MME a day — an amount 37% above the maximum recommended by the CDC.
A CDC review in 2016 concluded that higher opioid dosages are associated with increased overdose risk. One of the studies cited by the CDC found that patients taking between 50 and 100 MME of painkillers a day were up to 4.6 times more likely to overdose than those taking less than 20 MME. For patients receiving more than 100 MME a day, the risk was up to nine times higher than for the lower dose group.
"If Purdue sold a lot of 80 milligram pills, they are going to have proportionately more of the market on an MME basis," said Gary Franklin, the medical director for the Washington State Department of Labor and Industries. "That is an important point to get out. People are dying from these higher doses."
Franklin, who is an unpaid expert for the state of Washington in its lawsuit against Purdue, cautioned that other factors increase overdose risk as well. For instance, people who take benzodiazepines, such as Xanax, at the same time as opioids can fatally overdose on lower doses of painkillers.
The FDA, in a staff report this year, also found that a higher daily dose of opioid pain relievers "likely contributes causally to increased risk of intentional and unintentional opioid overdose." The agency noted that other factors influence overdose risk and that a substantial portion of overdose victims either did not have a prescription for the pills they took or were prescribed a lower daily dose.
Until 2010, according to the DEA's National Drug Threat Assessment Summary, OxyContin was "by far" the most commonly abused prescription painkiller in the country. In 2010, Purdue introduced a reformulated version of OxyContin that is harder to abuse. The new version can still be abused if crushed or taken orally, but it does not provide as potent a high as the older version, according to the agency.
In the Massachusetts hearing last month, Purdue relied on the lower per pill market share in oral arguments before the judge and in the accompanying slide presentation of data. One slide stated, "DEA Data Refute the Commonwealth's Allegations."
"What the commonwealth has done is create an extraordinary misperception in the community, and it is a dangerous misperception," Purdue's attorney Blank told the judge at the Aug. 2 hearing, according to a transcript of the proceeding. "The attorney general says it is all on Purdue. It is not all on Purdue."
"All those prescriptions are not equal," responded Assistant Attorney General Sandy Alexander. "Some of those prescriptions are for two pills of the lowest dose opioid. Purdue specialized in the most dangerous prescriptions because they were the most profitable."
The Massachusetts lawsuit cites internal Purdue records in alleging the company pushed higher doses because they were the most profitable. Authorities also allege that the company knew patients taking more of the drug were more likely to overdose. One Massachusetts doctor, who was paid more than $80,000 by Purdue to give talks to other physicians, prescribed 24 of the highest dose OxyContin pills a day for a single patient, according to the state complaint.
"Purdue specialized in getting patients on the highest doses for the longest periods of time," Alexander told the judge. "Those prescriptions, when you count them, they're not all equally valuable to a drug company and they're not all equally dangerous to the people of Massachusetts."
Purdue's market share from 2006 to 2012 would have likely been even higher save for an anomaly in the history of the drug. For a brief time, including the years 2006 and 2007, OxyContin had generic competition. Its sales slumped from $1.3 billion in 2005 to $752 million in 2006 and $1 billion in 2007, according to health care data firm IQVIA. Purdue sued the generic makers and gradually eliminated competition from them so that by 2008, OxyContin sales more than doubled from the prior year to $2.3 billion.
By that measure, dollar sales, Purdue has long been the market leader for prescription opioids. Internal Purdue records indicate OxyContin had more than 28% of the total market share in gross sales each year from 2008 through 2018. Since 1996, sales of OxyContin have totaled more than $35 billion. The Sackler family received at least $8 billion in company profits during that time, according to court records.
This story is a collaboration between ProPublica and STAT.
ProPublica news apps developer Mike Tigas contributed to this report.
Once it was called "hysterical" movement disorder, or simply "hysteria." Later it was labeled "psychogenic." Now it's a "functional disorder."
By any name, it's one of the most puzzling afflictions — and problematic diagnoses — in medicine. It often has the same symptoms, like uncontrollable shaking and difficulty walking, that characterize brain diseases like Parkinson's. But the condition is caused by stress or trauma and often treated by psychotherapy. And, in a disparity that is drawing increased scrutiny, most of those deemed to suffer from it — as high as 80% in some studies — are women.
Whether someone has Parkinson's or a functional disorder can be difficult to determine. But the two labels result not only in different treatments but in different perceptions of the patient. A diagnosis of Parkinson's is likely to create sympathy, but a functional diagnosis can stigmatize patients and cast doubt on the legitimacy of their illness. Four in 10 patients do not get better or are actually worse off after receiving such a diagnosis and find themselves in a "therapeutic wasteland," according to a 2017 review of the literature by academic experts.
"This is the crisis," said University of Cincinnati neurologist Alberto Espay, the author of guidelines on diagnosing functional movement disorders. "It shouldn't be stigmatized but it is. No. 1, patients are wondering if it is real. 'Does my doctor think I am crazy?' Secondly, doctors can approach it in a way that implies this is a waste of their time."
A study published last year in a leading neurological journal stoked the growing controversy. Of patients diagnosed with functional symptoms, 68% were women. This finding, the authors wrote, "suggests that female sex may be an independent risk factor for the development" of functional symptoms.
The study prompted a furious letter to the journal's editor from Dr. Laura Boylan, a New York City neurologist. She argued that the study's results might demonstrate instead that symptoms thought to be psychogenic were actually the result of Parkinson's, and that doctors were slow to identify the brain disease in women. "Disparities in healthcare for women are well established," she wrote, adding, "Women commonly encounter dismissal in the medical context."
For Boylan, the issue was more than a professional debate. It was personal. She had been diagnosed with Parkinson's-like symptoms that her doctors, all top caregivers at some of the world's leading medical institutions, largely believed to be psychogenic or side effects of medication. Most of her doctors were men, but two were women. Boylan, herself a brilliant neurologist, disagreed vehemently with them. She attributed her problems to a physiological cause, a tiny cyst in her brain, and grew despondent when other neurologists doubted her theory. She gave up her medical practice, became housebound and contemplated suicide. Even today, her case remains a mystery.
The first sign that something was wrong came in 2008.
At the time, Boylan was busy with a successful career that included work as a teacher, researcher and clinician. She was an assistant professor of neurology at the New York University School of Medicine; the director of the behavioral neurology clinic for the VA in New York City; and an attending physician at a hospital in Pennsylvania. She was married to another neurologist, Daniel Labovitz, who is a professor at the Albert Einstein College of Medicine and practices at Montefiore Medical Center in the Bronx.
It was while driving at night on a Pennsylvania highway that Boylan experienced a vivid hallucination. She saw a cartoonish chipmunk on the steering wheel, smiling and waving at her. Another time, two blue men with red hats appeared on either side of her. She knew the images were not real, but she couldn't make them go away.
Her doctors at the time blamed the hallucinations on side effects of psychiatric medicine Boylan took for her long-diagnosed bipolar disorder. Her bipolar condition would later add another element of uncertainty to the debate over her Parkinson's-like symptoms. Studies show that people with preexisting psychiatric disorders are more likely to develop Parkinson's — or have a functional disorder with similar symptoms. Boylan said she sees a psychiatrist for the bipolar disorder, but it's "just not a big deal in my life."
Over time, her health continued to worsen. In early 2011, during a tai chi class, she had difficulty balancing on her right leg. Later, she also noticed muscle twitching in her feet and legs.
Boylan was worried that some of her symptoms mirrored those found in patients with amyotrophic lateral sclerosis, or ALS, a rare and degenerative neurologic disease that affects the ability of muscles to function. ALS, also known as Lou Gehrig's disease, was ruled out by a specialist, but an imaging scan performed as part of that exam revealed a small cyst on the front right side of her brain. The location and type of cyst are considered rare. At the time, Boylan and the neurologist she consulted didn't believe the cyst was causing her movement problems and chalked it up as an "incidental" finding not to be concerned about.
In the fall of 2013, Boylan experienced a three-day bout of double vision that forced her to miss work. The episode was disturbing because it left her, for the first time, unable to perform her duties as a doctor.
About a week later, she went to see Janet Rucker, then a neuro-ophthalmologist at Mount Sinai Medical Center. Rucker diagnosed convergence insufficiency, a condition in which the eyes are unable to work together to focus on close by objects. Rucker thought it unlikely the brain cyst was causing the vision problem and believed it was more likely related to medication Boylan was taking, according to her notes.
Boylan returned home unconvinced by Rucker's opinion. Her vision improved enough to allow her to research the condition herself. She said she found instances where levodopa, a medication used to treat Parkinson's that she had prescribed many times for her own patients, helped alleviate the vision problem.
She decided to take her treatment into her own hands and took levodopa she prescribed for herself. Boylan knew the decision to test her own theory was a direct challenge to Rucker's competence. While legal, self-prescribing medication is considered an unsound practice by some in the medical establishment. Physicians who treat themselves risk removing the objectivity usually present in a doctor-patient relationship, which can lead to poor decisions.
Within an hour of taking the levodopa, Boylan's eyes converged and the vision problem cleared. That wasn't all. Involuntary tremors and twitches stopped. She later wrote that she "felt years younger" and "moved much better" immediately after taking the drug. For Boylan, the experience with levodopa confirmed what she had come to suspect; that the cyst in her brain thought to be harmless was in fact causing her Parkinson's-like symptoms. (In Parkinson's, nerve cells in the brain that help control body movements break down or die.) If she had a functional disorder, the drug should have no effect. She excitedly dashed off an email to Rucker reporting her success and attached a video showing her eyes working properly.
"That is a pretty impressive effect," Rucker replied. She wrote that she rarely recommended the drug for convergence insufficiency, but given Boylan's improvement, "perhaps I'll recommend it more often."
Rucker, however, didn't appear to think the cyst was responsible for Boylan's double vision, calling it the "least likely" of options, according to her notes of the case. More likely, she wrote, it was related to other medications Boylan was taking. Boylan didn't learn about the contents of the medical notes from her visit until later. Boylan, who believed her recovery proved that the cyst was the origin of her double vision, was insulted.
"That I solved this problem with levodopa, documented it, and returned to work the next day might be taken as evidence of my skill rather than having a screw loose," she later wrote to Rucker, who declined comment for this story.
Levodopa is a potent drug used to control tremors and stiffness in Parkinson's patients. The development of the drug, and what it revealed about how the brain works, was an important breakthrough that won one of the researchers involved the Nobel Prize in medicine in 2000. But levodopa can also produce side effects that include involuntary movements, from tics to sudden, jerky body motions, different from those that it had alleviated in Boylan.
Boylan decided to continue taking the drug, but wanted another neurologist to help manage her situation. She chose Elan Louis, a neurologist who had been just ahead of her in the Columbia residency program. Boylan told him she was serving as her own neurologist and that her situation was "getting acutely worse." The two doctors saw each other at the occasional reunion, but they were not close. Boylan largely knew of Louis by reputation. He is considered one of the leading experts on movement disorders and is the editor of Merritt's Textbook of Neurology, a standard clinical guide in the field. He practiced at Columbia when Boylan first began seeing him in late 2013 but was recruited to Yale University in 2015 to serve as chief of the movement disorders division in the neurology department.
Louis had not treated a specialist in his own field before. The relationship proved challenging. Boylan has a combination of intelligence and passion that attracts devoted friends. Louis described Boylan as "super smart" and someone who was constantly digging into the medical literature to learn as much as she could about her symptoms and the cyst in her brain.
She could also be blunt and confrontational. Boylan was one of several people arrested a decade ago for refusing to leave a U.S. senator's office as part of a sit-in advocating for single-payer health care. She was also an early proponent of limiting the perks that pharmaceutical companies give doctors to encourage them to prescribe their drugs, a stance that irked some colleagues but also won her admirers. Boylan was not hesitant to challenge her own doctors' assessments, as she had done with Rucker. With a mix of pride and contrition, she describes herself as a difficult patient.
In one email exchange in 2015, Boylan appeared miffed that Louis did not believe that a bout of heart palpitations and dizziness was related to her brain cyst. "I wish you'd responded earlier when you found my questions odd/unreasonable," Boylan chided Louis. "At present I know more about this area than you and yet seem crazier because of it."
At least 10% of the patients who seek help for movement disorders at the Yale clinic are determined to have a psychogenic, or functional condition, Louis said. At other neurology clinics, the number is as high as 20% and second only to headaches as the reason for seeking help. To determine if a condition is functional, neurologists identify symptoms that don't match with physiological movement disorders. In Boylan's case, the cyst was on the right side of her brain, which meant it should only cause symptoms on the left side of her body. The right leg weakness she experienced at tai chi, for instance, didn't fit with this.
Then there are a series of tests that can help determine if movements are genuinely involuntary. One group of tests is designed to distract a patient. A patient with a left arm tremor, as was the case with Boylan, might be asked to extend that arm out and then use the hand on the other arm to tap out a sequence of numbers. As the neurologist calls out for one tap, four taps, two taps and so on, he or she is watching to see if the tremor on the left side stops as the patient focuses on the tapping.
When Louis performed these tests on Boylan, she knew exactly what he was assessing. She administered the same tests to her own patients. To Boylan, the fact Louis was even doing the tests meant he had already concluded some of her symptoms were psychogenic. "I knew I was going to fail," she said later, adding that the tests are not always a valid indicator. "I tried so hard to do things properly that it can look extreme." Louis observed that Boylan's tremor stopped when she was distracted. "If something is truly involuntary, it should persist whether someone is paying attention or not," Louis told me. He agreed with Boylan that the tests are not foolproof, but said that they are useful in evaluating a case.
In his initial assessment of Boylan, Louis referenced the brain cyst and possible medication-induced effects as well as the possibility that "something else is going on here." The difficulty, he noted, was "piecing it all together."
To help solve this puzzle, with Louis' encouragement, Boylan consulted two neurosurgeons. The first, at Columbia Presbyterian, wrote the cyst might be playing a role in her tremors but warned surgery should only be considered as a "last resort." The second, at Mount Sinai, was skeptical the cyst was playing a role, writing, "It is difficult for me to pin the presence of this cystic lesion on her worsening symptoms."
After the appointments with the surgeons, Boylan returned to see Louis on Nov. 14, 2013. Louis told her he saw some "psychiatric overlay" in her symptoms and said there may be something "organic beneath a lot of overlay," according to his notes. He estimated that perhaps 70% of her symptoms were psychiatric in nature. He doubted the brain cyst was causing her rapidly worsening symptoms. It "doesn't fit," he wrote. He noted Boylan "was not happy about this but seems to have accepted it during subsequent emails/phone calls."
Louis told me that Boylan's case was "very complicated" because some of her symptoms and the cyst in her brain were rare. "Her syndrome is difficult to neatly put in one box," he said. "That is why she has defied diagnosis and had a difficult time." A psychogenic diagnosis, he said, is hard for patients because "there is a feeling with people that it is not real, it is all in our head and imaginary and undervalues and devalues what they are going through. No one wants that."
While Parkinson's is treated with medications such as levodopa, patients determined to have a functional or psychogenic condition are often prescribed psychological regimens such as cognitive behavioral therapy. Louis said he has worked successfully with a Columbia psychiatrist to treat functional patients. "We have had patients unable to walk who were walking out two weeks later," he said. Louis said he discussed Boylan's case with her psychiatrist to share his evaluation of her situation and to coordinate medications. Her psychiatrist referred her to behavior therapy, Boylan said. "I did a round," she said. "It helped me tolerate problems but did not change them."
The more Boylan tried to convince others that the cyst was causing her problems, the more she felt she was viewed with suspicion. It became an obsession. Louis once remarked to Boylan that no one in the world knew as much about the square inch of brain where the cyst was located as she did.
Despite their clashes, Boylan respected Louis. When he delivered his diagnosis, it caused her to second-guess her theory about the cyst. She also believed that some of her doctors used her bipolar disorder to cast doubt on her complaints. Her symptoms worsened and the stress overwhelmed her. On Dec. 9, she was admitted to the emergency room at St. Luke's Hospital with severely elevated blood pressure and stress-induced cardiomyopathy, a heart muscle disease that makes it harder to pump blood. When a cardiologist inquired if she was under stress, Boylan tearfully told her, "My doctors think I am hysterical."
As 2014 wore on, Boylan needed increased doses of levodopa to get the relief she first experienced when self-treating her double vision. It was a vicious circle. She needed the medicine to help with her with her lack of balance, which was causing her to fall, as well as her vision and left arm tremor. But the side effects from the medicine were severe.
On a Sunday afternoon in September 2014, Boylan stumbled out of a taxicab onto the sidewalk in front of the emergency room at NewYork-Presbyterian/Columbia University Medical Center. A couple of ambulance workers noticed she was having difficulty and helped her into a wheelchair.
Boylan was gaunt. She had lost more than 30 pounds since the beginning of the year. In the preceding days she slept little. Her body was twisting up in uncomfortable and unusual positions, making it hard to walk. Her head jerked and her knees pushed together as she bent forward. She was unable to control the movements. In a brief video taken after she was admitted to the hospital, Boylan leaned against a wall with her head slumped awkwardly to the side as she waited to use a bathroom.
To the doctors who attended to Boylan, her condition was disturbing. They knew her as an accomplished neurologist who trained and mentored a new generation of doctors. She was a familiar face at Columbia, having done her medical residency there in the late 1990s. On this day, Boylan appeared paranoid and agitated. She argued with doctors about medication and their assessment of her condition. She complained that her husband thought she was crazy.
Her case defied an easy diagnosis. "She is a quite complicated movement disorders patient," one of the treating physicians at Columbia noted.
The attending neurologist at the hospital that weekend thought Boylan was suffering from "mild psychosis" with contributing factors that included fatigue and the side effects of medication. The doctors noted Boylan recently received a distressing email about a former patient who was dying; the implication was that this was a possible source of a psychogenic effect. Louisa Gilbert, a friend of Boylan's, said that when she arrived at the hospital she found doctors treating Boylan as a "psych case."
Boylan left the hospital after one night. In the following weeks, her condition worsened. She stopped working and was largely homebound. Her diet was poor, consisting primarily of ice cream and grapefruit juice, and she continued to lose weight. She was again having trouble reading and developed severe writer's cramp that she attributed to the brain cyst.
Boylan grew dependent on others to take care of her, including Gilbert, whom she first met at boarding school. A professor of social work at Columbia University, Gilbert always admired Boylan for her resiliency. Boylan went through her last two years of medical school while a single parent. She never missed work. Now there were days when Gilbert would show up at Boylan's apartment and find her friend writhing on the floor, unable to get up.
"It was so bewildering," Gilbert said. "What the hell is going on?"
By December, Boylan was spending hours lying on the floor of her apartment while sipping orange juice to speed up the absorption of the levodopa she was taking to stave off muscle spasms. She was now separated from her husband; they would later divorce. Alone and unable to work, Boylan despaired and made plans for suicide. "I had and am still having emotional meltdown over this loss of profession/vocation/self-definition," she wrote in an email to her brother, Ross, in California.
Ross and Laura Boylan were the only children of a corporate lawyer and a homemaker. For most of their youth they lived in an apartment near the Metropolitan Museum of Art on Manhattan's Upper East Side. Their mother suffered from severe mental illness and was hospitalized a number of times. Their father was an alcoholic. The couple often argued. Laura was happiest when she was out of the apartment, and she often spent summers away from the city.
The Boylan siblings both attended boarding school at Phillips Academy in Andover, Massachusetts, but rarely interacted there. Ross was two years older and each of them moved in their own circles. Laura returned to New York City to attend Barnard College. Ross went on to Harvard University and then moved permanently to the west coast.
In her December 2014 email to her brother, Boylan wrote "bad news" in the subject line. She said the brain cyst was causing "more and more problems." She shared that she gave up clinical practice because of "fatigue, stamina, vision and other problems." She said there was a "small possibility of neurosurgery" but she wasn't sure it was worth the risk, and she doubted any surgeon would take the chance anyway. She said her symptoms were getting progressively worse and there was no cure.
Ross Boylan responded with a short note that ended with a touch of optimism. "The future is not written," he wrote.
The email from his sister caught Ross Boylan off guard. "I thought she was doing OK," he said in an interview. "Then she sends me this email, oh by the way every single sphere of my life is collapsing." The doctors she consulted seemed to be uniform in their view that her brain cyst was irrelevant and that removing it would be pointless and probably dangerous, Ross Boylan said. "It's impossible to operate, and nothing could be done about it," he said. Most concerning, it seemed to him that the "fight had gone out" of his sister.
Ross Boylan is a research statistician at the University of California, San Francisco, and his department frequently works with doctors at the medical school there. Among all the specialists at the university, he figured there must be one who could help his sister. He didn't tell Laura that he was going to try to help. He was afraid she would tell him not to bother, and he didn't want to get her hopes up in the event his efforts failed.
On a webpage for the university neurology department, Boylan came across a group photo that included his boss. It turned out his boss had done some statistical work for the research team of neurosurgeon Michael Lawton. An introduction was made. Ross Boylan gave Lawton what information he had about is sister's condition, and within days Laura Boylan was in contact with the surgeon by phone and email.
"My hunch is that operating on the cyst will help and I am ready to proceed," Lawton wrote her. "You can appreciate that we surgeons like to be certain that our efforts are going to be curative, and in your case I can't be sure. Nonetheless, I think this operation will be safe and I am ready to move forward whenever you are."
Boylan decided to go ahead with the surgery and booked a flight to San Francisco.
Lawton told me that the cyst was located in an area of brain circuitry that is disturbed in Parkinson's patients and could be the cause of her movement disorders and double vision. "It fits," he said. "It's right where that kind of lesion would produce those symptoms." Nonetheless, he said he cautioned Boylan the procedure could be done perfectly with no complications yet have no therapeutic effect.
Louis said he wasn't certain if the surgery was a good idea. "I deferred to the surgeon," he said. "There was little margin of error, and that made it a very complex decision." Others close to Boylan were concerned about the speed in which the decision to operate was made and that Boylan decided to go ahead before even meeting with Lawton in person. Boylan herself confessed in an email to a colleague days before the operation that she felt "in over my head" in arranging the surgery and was "beginning to think this is not a good idea."
On Jan. 9, 2015, Lawton and his team performed a nearly five-hour craniotomy on Boylan in which part of the bone in her skull was removed to expose her brain. The cyst was drained and a piece cut out to prevent it from accumulating fluid in the future.
Boylan was worse off in the weeks after the surgery. The awkward, twisting movements persisted. She couldn't use her right arm. She didn't know if she would recuperate to a life worth living.
About a month after the surgery, Boylan saw neurologist Rebecca Gilbert at NYU Langone Medical Center. Boylan arrived for the appointment wearing an eye patch and an arm sling.
Gilbert's notes of the encounter make it clear she thought Boylan's symptoms, even after the surgery, might be psychogenic. A right side tremor was "inconsistent" and abnormal movements were "variable and erratic" and only "present during the formal exam." In contrast, when "patient is telling her story, there are no abnormal involuntary movements." Gilbert wrote that she was "very concerned that at least part of this neurologic picture is psychogenic in nature."
By mid-March, just a month later, Boylan's condition improved significantly. On March 21, she sent an email to Lawton with the subject line "have turned a corner." She said her symptoms were improving and she was "back out and about in the world." She told him he had "given me my life back." She also criticized those who questioned the wisdom of her decision to undergo the operation. "I confess that, in accord with my own pre-existing bias, some neurology pals have thought I must have found a cowboy who took a lucky long shot," Boylan wrote. "I correct them carefully in detail."
Ten days later, Boylan saw Gilbert for a follow up appointment. Gilbert wrote that Boylan "returns looking very well. She feels well neurologically and psychiatrically. She attributes her improvement to the surgery." Gilbert declined comment on Boylan's case.
By June, Boylan was back to work.
On a Sunday morning this spring, Boylan sits at a conference table in the neurology department at Bellevue Hospital in Manhattan, the country's oldest public hospital. The room is sparse save for a large, formal portrait of the former head of neurosurgery. The painting does not escape Boylan's notice. Like many of the leading figures in neurology, the former official is a white male.
Boylan, 57, is dressed casually in black pants and a flower-print blouse. A lanyard with a Bellevue identification tag hangs from her neck. On this morning, she is the attending neurologist, overseeing medical residents. In addition to Bellevue, Boylan does part-time stints at a hospital in Duluth, Minnesota, and a VA facility in Albany. She has regained the weight she lost when her illness was at its worst, as well as the mental sharpness that dulled during that time.
Across the table, a resident briefs her about a woman who arrived in the emergency room the day before. The exchange is thick with medical terms, but there is a clear point to the back and forth: They are trying to determine if the woman's symptoms are functional. The patient complained of a generalized burning sensation. That's the type of vague complaint that could point to a psychogenic diagnosis. On the other hand, the resident said the patient reported having problems with her coordination, but not with her strength. People with functional disorders might also indicate they were weak, because they tend to have a wide array of complaints.
When the resident pulls up a scan of the woman's brain on a screen mounted on the wall, Boylan points to an area that she describes as a "little bent" with a "kink in it." This is potential evidence, she says, of a cerebral fluid leak. The woman recently underwent an epidural injection and fluid leaks are a known complication of the procedure. Boylan talks to the patient and comes away confident a leak is the problem. The remedy is intense rehydration. The patient improves, and is released the next day.
Afterward, Boylan said her own experience has prompted her to evaluate cases more carefully. She said she also has to guard against failing to recognize cases that may, in fact, be psychogenic. "I have to be careful not to lead the patient," she said.
After her surgery, Boylan requested copies of her medical records from most of the doctors who treated her over the prior five years. She was angered to find that several of them highlighted her history of bipolar disorder — in some cases it was the first item entered — and discounted the role of the brain cyst in her symptoms. Boylan believes that many of her doctors discounted the brain cyst because of a predisposition toward diagnosing psychogenic conditions in women, and that her case is symptomatic of gender bias in the field of neurology.
"I don't believe I would be treated this way if I was a man," she said. By sharing her experience publicly, Boylan is determined to counter what she views as an ingrained suspicion of symptoms reported by women that dates back to the use of the word "hysterical" to demean them as emotionally and physically weak and prone to exaggeration. She calls it a "pervasive and potentially lethal bias" in neurology.
Gender inequality is rife in neurology. Female neurologists were last in pay and had the biggest salary gap between men and women, in a 2016 survey of salaries by specialty and gender at medical schools.
The American Academy of Neurology has had only one female president in its 71-year history even though women now constitute 40% of the professional society's membership. Female neurologists are also disproportionately underrepresented in awards handed out by the academy, according to a study last year. In 24 of the 28 years studied, the recipients of the academy's lifetime achievement awards did not include a single woman.
The more difficult question is whether this inequality spills over to clinical practice. Boylan received care from both male and female specialists, and her medical records are devoid of outright indications of gender bias. Boylan said female neurologists are trained "in a paradigm of thinking generated by men for men" in which the same symptoms are viewed differently in men and women.
Louis said there was no gender bias in his evaluation of Boylan. He said functional disorders are "far more common" in women and "if a person is that gender I am more comfortable with that diagnosis." Still, gender is "only one of many, many pieces of information" used to make a diagnosis, he said.
Dr. Sarah Lidstone, a specialist in functional movement disorders at Toronto Western Hospital, said it is "impossible to say" that gender bias doesn't exist in diagnoses of this condition. "That does factor into that." Still, she said, there appear to be real gender differences. "We don't know why. It's complicated."
Researchers are working to figure out whether women are disproportionately diagnosed with functional disorders.
"We don't know what is right or the whole truth necessarily," said Dr. Mark Hallett, a senior investigator at the National Institute of Neurological Disorders and Stroke. He said one study underway is looking at whether women suffer more childhood trauma, particularly sexual abuse, than men and if that is a cause of functional disorders. He said he didn't believe that gender bias played a significant role in the fact that women receive the diagnosis more often than men, and he said other explanations may include hormonal differences between the sexes or that women may be more likely to seek treatment.
It's impossible to know for certain how Boylan got better. The workings of the mind are complex and our understanding of diseases of the brain and of psychology is constantly evolving. It may be that, as Louis suspected, a combination of factors was at work that include both a psychogenic component and the brain cyst.
"To me, where she is now is nothing short of a miracle," said Boylan's friend, Gilbert.
I asked Lawton if Boylan might have experienced a placebo effect from the surgery. While that can happen, he said, Boylan's relief and turnaround "was pretty significant to the point that it outlasted the typical duration of most placebo effects which I think run their course."
Louis said he believes the surgery "did do some good" and at a minimum removed a cyst that was in a dangerous position. But he is not persuaded it is the main reason for Boylan's turnaround. He suspects many of her symptoms were functional, and sometimes patients with that diagnosis get better over time.
Boylan is convinced her cyst and reactions to medicine to treat the symptoms caused by it were the primary sources of her illness. She views her story as a cautionary tale: She was a woman with means, a degree in medicine and a cyst in her brain. Still, she said, "that did not spare me from being cast as hysterical."
David Armstrong is a senior reporter at ProPublica specializing in health care investigations.
