28 November 22
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Donald Trump is like the abusive boyfriend or ex-husband who won’t go away. In that situation, one would take out a restraining order, but obviously we can’t do that with Mr. Trump. So how about not making him the predominant news story? I have noticed, to be fair, that he is a little less predominant, but let’s face it, he is still everywhere in the news. I understand that announcing his candidacy for president is news. But does it have to be a front-page story? Does the end of his exile from Twitter have to dominate the day’s coverage? Does every move he makes, every ridiculous statement he utters, have to be reported?
With each news story, each segment on television, we are giving him the elixir that keeps him going — attention. There are plenty of things going on in the world that are more important than Donald Trump. We have a planet to save. Russia is still waging war on Ukraine, and still imprisoning American citizens like Brittney Griner. The West is running out of water. There are mass shootings so often it’s hard to keep track of them. Just to name a few really important issues.
What if there was a collective pledge among responsible news organizations to take Donald Trump off the front pages, to not talk about him every single day? He would huff and puff and try to blow the house down, but no one would be paying attention. Think of how much calmer the waters would be. Think of how many other stories would get the bandwidth they deserve.
It’s not easy ignoring someone who keeps barreling onto the world stage, determined to create chaos and eviscerate the democracy we depend on, but it is often the only remedy that will work. The person being ignored will find himself alone on a battlefield he created, with only his own voice bellowing around him. Linger on that image for a moment — Donald Trump all alone in the wilderness, with only his own voice to keep him company.
There was a very satisfying end to the story of my school bully. My parents insisted that I had to invite everyone in my class to my birthday party — I couldn’t be rude and leave him out. We had my birthday parties at our ranch and the entertainment was a man with a horse and a dog, who had trained the dog to ride on the horse and do other tricks. Then the kids would get a chance to ride the horse for a few moments. My former tormentor burst into tears and recoiled at the idea of getting on a horse. He was terrified, and everyone started laughing at him.
Every bully has something they’re scared of. Every bully has something that knocks them off their game and reveals the weaknesses they’ve worked so hard to hide. All the media has to do is turn away from Donald Trump and we will see who and what he truly is. Aren’t you at least curious?
Sen. Raphael Warnock takes a selfie with a supporter during a campaign rally at Georgia Tech in Atlanta on November 18, 2022. (photo: Brandon Bell/Getty Images)
Democrats will have the majority next year. After that, things get much tougher.
The hard part is coming in 2024, when the party faces a starkly unfavorable map that could put them in a deep Senate hole for some time if things go even somewhat poorly.
So even though next week’s runoff pitting Sen. Raphael Warnock (D-GA) against Herschel Walker (R) won’t determine next year’s Senate majority, because Democrats have already won it, its outcome will have significant implications for how well-positioned the party is in its next very challenging Senate cycle.
Currently, just three Democratic senators represent states Donald Trump won in 2020, and they’re all up for reelection in 2024. These are Joe Manchin (D-WV), Jon Tester (D-MT), and Sherrod Brown (D-OH), though only Brown has confirmed he’s running again. These are all very red states, and winning them in a presidential year will be quite difficult for Democrats.
But the vulnerabilities go deeper. The only remotely close states in the presidential contest where Republicans are defending seats are Florida and Texas — two states where Democrats keep coming up short of late. Democrats are also defending seats in five states Joe Biden very narrowly won in 2020. These seats are held by Kyrsten Sinema (D-AZ), Tammy Baldwin (D-WI), Bob Casey Jr. (D-PA), Jacky Rosen (D-NV), and Debbie Stabenow (D-MI).
Democrats might think they have nothing to worry about regarding this group of seats, because, look, the party just defied the naysayers in the tough year of 2022, winning at least one statewide contest in each of these — so clearly these states lean in their favor.
But it’s always a mistake to overread the results of the last election, and to underestimate how much things could change before the next one. Particularly if Trump is not the nominee again, the party coalitions could be scrambled in unpredictable ways. And even Trump came quite close to winning these states in 2020.
The Class of 2024
Senators serve six-year terms, so only one-third of the body is up for election each cycle. And the particular grouping of Senate seats (referred to as a “class”) up for election in 2024 has enjoyed a particularly charmed run for Democrats. You have to go all the way back to the 1994 GOP wave for a strong Republican performance. Since then, they’ve been on the ballot in the following years:
- 2000: A closely fought presidential year in which Al Gore won the popular vote but George W. Bush won the Electoral College, and Democrats picked up four Senate seats on net
- 2006: A Democratic wave year, in which the party retook both the House and the Senate, picking up six seats in the latter chamber
- 2012: A strong Democratic year for Barack Obama’s reelection, in which the party unexpectedly expanded its Senate majority by two seats
- 2018: Another Democratic wave year — but the party had won so many seats in deep red states in previous cycles that they had several incumbents in strongly Republican territory, so they ended up with a net loss of two seats
So this Senate class is risky for Democrats in part because they’ve had such good luck with it in the past. Nearly half of Democrats’ Senate majority — 23 sitting senators — come from this grouping of seats, so they’ll all be on the ballot in 2024. Meanwhile, only 10 Republicans will be up, though special elections could increase this number. That’s already a numerical disadvantage. But the disadvantage extends to which specific seats are up.
Which specific seats are up
To understand the extent of the Democrats’ challenge, it’s important to realize that the Senate has changed. In the past, it was common for a state’s voters to back Senate and presidential candidates from different parties. For instance, after the bitterly fought 2000 election, 30 of 100 sitting senators represented states that their party’s presidential nominee did not win in the most recent election. That’s a lot of ticket-splitting.
Since then, that number has gradually dwindled, as red-state Democrats and blue-state Republicans have retired or gone down to defeat. When Trump took office, there were 14 such senators remaining. Next year, there will be either five or six (depending on whether Walker can unseat Warnock in Georgia’s runoff election). The Senate has sorted by partisanship.
Of course, very close states at the presidential contest can still go either way. But it’s gotten much tougher to defy partisan gravity in deeply Republican or Democratic states — especially in a presidential year. In 2016, zero states elected presidential and Senate candidates from different parties. In 2020, just one state did, as Republican Sen. Susan Collins and Joe Biden both won in Maine.
In 2024, all three Democratic senators representing states Trump won in 2020 — Manchin in West Virginia, Tester in Montana, and Brown in Ohio — are up.
Manchin and Tester haven’t announced whether they’re running again. Both have repeatedly won in their respective states, though their victories in 2018 were narrow (they each won by about 3.5 percentage points). If either or both retire, Democrats would have immense difficulty finding nominees with comparable cross-partisan appeal. Brown has said he is running again, and Ohio isn’t quite as red as the other two states, but if Republicans can find a competent challenger, he’ll face a tough contest too.
So that’s three seats where, per underlying partisanship alone, Democrats will have a hard go of it.
Then there are five swing states which, if recent history is any guide, are likely to have closely matched Senate and presidential outcomes.
In Arizona, Kyrsten Sinema has infuriated progressives and may face a primary challenge from Rep. Ruben Gallego. In Nevada, Jacky Rosen just saw her colleague Catherine Cortez Masto narrowly survive a very close contest in 2022. Then there are the well-liked Rust Belt incumbents Debbie Stabenow, Tammy Baldwin, and Bob Casey Jr.
None of them will start off as underdogs, and all could well survive. But again, much will likely depend on the presidential contest, and if that contest trends toward the GOP, several of these Senate seats could follow.
Next is a set of likely Democratic states — Maine, where independent Sen. Angus King caucuses with the Democrats; he is 78 and hasn’t announced whether he’s running again, Minnesota (Amy Klobuchar), Virginia (Tim Kaine), and New Mexico (Martin Heinrich). All start as the favorites, but these states aren’t so overwhelmingly Democratic that they’re absolutely certain to win.
Beyond that, Democrats will also have to defend the seat of Sen. Bob Menendez (D-NJ), who is under federal investigation again. Menendez was previously indicted on public corruption charges in 2015, but his trial ended with a hung jury and the Justice Department gave up on the case. New Jersey is a solidly Democratic state but the party would probably feel better if their nominee wasn’t perennially a DOJ target.
Meanwhile, of the GOP-held seats up for election, only those held by Sens. Rick Scott (R-FL) and Ted Cruz (R-TX) are in remotely close presidential states.
Florida has been trending away from Democrats, as recently seen in Gov. Ron DeSantis and Sen. Marco Rubio’s landslide reelection victories this month. Texas has been trending toward Democrats (Trump only won it by 5.6 percentage points in 2020, and Cruz won reelection by 2.6 percentage points in 2018), but still, Democrats haven’t won a statewide race there since 1994.
The takeaway
Democrats’ forbidding 2024 Senate math raises the stakes of the Warnock/Walker runoff in Georgia — if the party starts off with a 51-49 majority rather than a 50-50 one, they can at least afford to lose one seat next cycle without losing control.
That’s especially important because, in a presidential year, the party’s biggest challenge will be holding on to their three seats in deep red states — West Virginia, Montana, and Ohio. The first big question is whether Manchin and Tester will run again, and if they do, the next question is whether they can keep defying partisan gravity, as Collins did in 2020.
But an analysis based purely on statewide partisanship would suggest Democrats are likely to lose all three seats even in a great year for their presidential candidate and their party nationally. That’s the main reason holding the Senate will be so tough for them. The 2022 Senate map was, as I wrote last year, “relatively balanced,” but the 2024 map just isn’t. (And again, that’s mainly because Democrats have been so successful in these races previously, so they simply have more to lose.)
And if 2024 is not a good year for Democrats nationally? Well, then they could lose some or all of those five swing state seats, putting them at a serious deficit in the Senate that it could take many years to climb out of.
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Protesters march in Beijing at a rally for the victims of a deadly fire as well as a protest against China's harsh COVID-19 restrictions early Monday. (photo: Noel Celis/AFP/Getty Images)
The blaze took more than three hours to extinguish, according to authorities — largely because the building's entrances had been blocked off and many of the doors locked, according to neighbors and witnesses. In the end, Abdurahman, 48, and her four children were among the 10 people killed in the fire.
"She dedicated her entire life to her children and their education," said Abdulhafiz Maimaitimin, her nephew, from his home in Switzerland.
"If we die, let's die together"
Anger over their deaths, combined with mounting frustration over the ongoing burden of China's COVID-19 controls, boiled over this past weekend, coalescing in mass protests across dozens of China's biggest cities in an extraordinary show of dissent against the country's ruling Communist Party.
"If we die, let's die together," protesters can be heard shouting in several social media videos taken Saturday from the main town square in Urumqi, the capital of China's western Xinjiang region, the night of the fire. Other demonstrators chanted "liberate the city" from lockdowns.
Xinjiang authorities held a press conference on Saturday saying they would lift lockdowns in low-risk neighborhoods where there were no active COVID-19 cases and relax restrictions "in stages" across the rest of the region. Much of Xinjiang has been under continuous lockdown for more than three months.
But by then, the unrest had already spread to other cities.
Protests are exceedingly rare in China because of an extensive system of online surveillance and offline intimidation, which authorities use effectively to head off any sign of dissent.
Young Chinese are fed up with lockdowns
Yet frustrations with China's "zero-COVID" regime — which has throttled the domestic economy and denied residents life-saving care — were irrepressible.
In Nanjing, university students organized a candlelight vigil and held up blank sheets of paper to illustrate their peaceful dissent. In Shanghai, hundreds of residents spontaneously congregated on Saturday and Sunday evenings, many with flowers and candles, on the city's Urumqi Road, a busy throughway, to commemorate the fire victims and to demand arrested protesters be released by the police. Some people even dared to call for the ouster of China's leader, Xi Jinping.
Protests even punctured Beijing, the country's capital, and the heart of political power in China. Numerous demonstrations across universities and street corners in Beijing cropped up, despite a heavy police presence throughout the city, with demonstrators demanding democratic reforms, rule of law and an end to the country's coronavirus controls.
Protests erupted in Beijing, the political center, too
On Monday, authorities in Beijing said they would no longer set up barricades outside buildings where COVID-19 cases are discovered. In the southern city of Guangzhou, some mass testing was suspended, but China has made no indication the state's overall pandemic policies will change.
"Beijing is closely watched by the authorities. If Beijing residents don't speak up for our compatriots across the country, who else will support them?" a protester who gave their name as Jayho told NPR.
On Sunday night, thousands of Beijing residents peacefully gathered along the banks of a river and chanted for freedom of speech and liberty and to light candles in memory of the 10 people who died in the Urumqi fire, including Abdurahman and four of her children.
"The lockdown was finally lifted in our hometown, but in exchange for 10 lives," a protester who said she was from Xinjiang told NPR. She declined to provide her name for personal security reasons.
Abdurahman's husband, Metniyaz Eli, a Uyghur businessman, and their elder son Ilyas Eli were among those detained in 2017 in the jade-trading city of Hotan, in southern Xinjiang. The state rounded up at least hundreds of thousands of ethnic Uyghurs, a Turkic ethnic minority, as part of an extralegal detention campaign. Maimaitimin, whose own father was arrested with them, says he has not heard from any of the men since.
Their detentions meant that Abdurahman was home alone with four of her children — Shahide, Abdurrahman, Nahdiye and Imran — when their home caught on fire. All five were pronounced dead at the hospital.
Her neighbors and their relatives took a huge risk to reach out to tell him the tragic news, because as Uyghurs, they could get in trouble just for talking to people abroad, says Maimaitimin.
He says he and his family are devastated by their deaths: "My aunt never broke any laws or hurt anyone in her life."
"People have been wanting to protest for a long time"
The public discontent continues with more vigils planned for a third night on Monday, despite the threat of arrest.
"I have been posting information online, trying to get people to unify and work to get the authorities to lift our lockdown. They actually have no legal power to lock us down. They are limiting our freedom," says Morris Yao, a Beijing resident. "When something like this lands on your head, you really start to pay attention to your own interests and rights."
Yao was one of the protesters who came out as part of a small Beijing demonstration over the weekend after authorities tried to put his compound under lockdown, even though there were no cases in his building. The demonstration worked; he's now able to go in and out of his compound.
"People have been wanting to protest for a long time," Yao says. "They just needed an opening."
Yet by Monday, a rapid state crackdown had already stifled further signs of protest. Dozens of police officers patrolled Sitong Bridge in Beijing, where a previous protest against pandemic restrictions had occurred in October and where some residents tried to organize an evening vigil.
Some protesters said police were also calling them on their personal mobile numbers, asking for their whereabouts during the previous two nights. One protester said their friend had been taken away from their Beijing home afterward and was still missing.
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Family practitioner Scott Nelson. (photo: Edmund Fountain/ProPublica)
Half of all Americans now die in hospice care. Easy money and a lack of regulation transformed a crusade to provide death with dignity into an industry rife with fraud and exploitation.
Farmer was selling hospice, which, strictly speaking, is for the dying. To qualify, patients must agree to forgo curative care and be certified by doctors as having less than six months to live. But at AseraCare, a national chain where Farmer worked, she solicited recruits regardless of whether they were near death. She canvassed birthday parties at housing projects and went door to door promoting the program to loggers and textile workers. She sent colleagues to cadge rides on the Meals on Wheels van or to chat up veterans at the American Legion bar. “We’d find run-down places where people were more on the poverty line,” she told me. “You’re looking for uneducated people, if you will, because you’re able to provide something to them and meet a need.”
Farmer, who has doe eyes and a nonchalant smile, often wore scrubs on her sales routes, despite not having a medical background. That way, she said, “I would automatically be seen as a help.” She tried not to mention death in her opening pitch, or even hospice if she could avoid it. Instead, she described an amazing government benefit that offered medications, nursing visits, nutritional supplements and light housekeeping — all for free. “Why not try us just for a few days?” she’d ask families, glancing down at her watch as she’d been trained to do, to pressure them into a quick decision.
Once a prospective patient expressed interest, a nurse would assess whether any of the person’s conditions fit — or could be made to fit — a fatal prognosis. The Black Belt, a swath of the Deep South that includes parts of Alabama, has some of the highest rates of heart disease, diabetes and emphysema in the country. On paper, Farmer knew, it was possible to finesse chronic symptoms, like shortness of breath, into proof of terminal decline.
When Farmer started out in the hospice business, in 2002, it felt less like a sales gig than like a calling. At 30, she’d become a “community educator,” or marketer, at Hospice South, a regional chain that had an office in her hometown, Monroeville, Alabama. Monroeville was the kind of place where, if someone went into hospice, word got around and people sent baked goods. She often asked patients to write cards or make tape recordings for milestones — birthdays, anniversaries, weddings — that they might not live to see. She became an employee of the month and, within a year, was promoted to executive director of the branch, training a staff of her own to evangelize for end-of-life care.
Things began to change in 2004, when Hospice South was bought by Beverly Enterprises, the second-largest nursing-home chain in the country, and got folded into one of its subsidiaries, AseraCare. Not long before the sale, Beverly had agreed to pay a $5 million criminal fine and a $175 million civil settlement after being accused of Medicare fraud. Its stock value had slumped, and Beverly’s CEO had decided that expanding its empire of hospices would help the company attract steadier revenue in “high-growth, high-margin areas of health care services.” Less than two years later, as part of a wave of consolidations in the long-term-care industry, Beverly was sold to a private-equity firm, which rebranded it as Golden Living.
It might be counterintuitive to run an enterprise that is wholly dependent on clients who aren’t long for this world, but companies in the hospice business can expect some of the biggest returns for the least amount of effort of any sector in American health care. Medicare pays providers a set rate per patient per day, regardless of how much help they deliver. Since most hospice care takes place at home and nurses aren’t required to visit more than twice a month, it’s not difficult to keep overhead low and to outsource the bulk of the labor to unpaid family members — assuming that willing family members are at hand.
Up to a point, the way Medicare has designed the hospice benefit rewards providers for recruiting patients who aren’t imminently dying. Long hospice stays translate into larger margins, and stable patients require fewer expensive medications and supplies than those in the final throes of illness. Although two doctors must initially certify that a patient is terminally ill, she can be recertified as such again and again.
Almost immediately after the AseraCare takeover, Farmer’s supervisors set steep targets for the number of patients marketers had to sign up and presented those who met admissions quotas with cash bonuses and perks, including popcorn machines and massage chairs. Employees who couldn’t hit their numbers were fired. Farmer prided herself on being competitive and liked to say, “I can sell ice to an Eskimo.” But as her remit expanded to include the management of AseraCare outposts in Foley and Mobile, she began to resent the demand to bring in more bodies. Before one meeting with her supervisor, Jeff Boling, she stayed up late crunching data on car wrecks, cancer and heart disease to figure out how many people in her territories might be expected to die that year. When she showed Boling that the numbers didn’t match what she called his “ungodly quotas,” he was unmoved. “If you can’t do it,” she recalled him telling her, “we’ll find someone who can.”
Farmer’s bigger problem was that her patients weren’t dying fast enough. Some fished, drove tractors and babysat grandchildren. Their longevity prompted concern around the office because of a complicated formula that governs the Medicare benefit. The federal government, recognizing that an individual patient might not die within the predicted six months, effectively demands repayment from hospices when the average length of stay of all patients exceeds six months.
But Farmer’s company, like many of its competitors, had found ways to game the system and keep its money. One tactic was to “dump,” or discharge, patients with overly long stays. The industry euphemism is “graduated” from hospice, though the patient experience is often more akin to getting expelled: losing diapers, pain medications, wheelchairs, nursing care and a hospital-grade bed that a person might not otherwise be able to afford. In 2007, according to Farmer’s calculations around the time, 70% of the patients served by her Mobile office left hospice alive.
Another way to hold on to Medicare money was to consistently pad the roster with new patients. One day in 2008, facing the possibility of a repayment, AseraCare asked some of its executive directors to “get double digit admits” and to “have the kind of day that will go down in the record books.” A follow-up email, just an hour later, urged staff to “go around the barriers and make this happen now, your families need you.”
That summer, Boling pushed Farmer to lobby oncologists to turn over their “last breath” patients: those with only weeks or days to live. At the time, Farmer’s 59-year-old mother was dying of metastatic colon cancer. Although Farmer knew that the service might do those last-breath people good, it enraged her that her hospice was chasing them cynically, to balance its books. The pressure was so relentless that sometimes she felt like choking someone, but she had two small children and couldn’t quit. Her husband, who had been a co-worker at AseraCare, had already done so. Earlier that year, after fights with Boling and other supervisors about quotas, he had left for a lower-paying job at Verizon.
Farmer’s confidante at work, Dawn Richardson, shared her frustration. A gifted nurse who was, as Farmer put it, “as country as a turnip,” Richardson hated admitting people who weren’t appropriate or dumping patients who were. She was a single mom, though, and needed a paycheck. One evening in early 2009, the two happened upon another way out.
The local news was reporting that two nurses at SouthernCare, a prominent Alabama-based competitor, had accused the company of stealing taxpayer dollars by enrolling ineligible patients in hospice. SouthernCare, which admitted no wrongdoing, settled with the Justice Department for nearly $25 million, and the nurses, as whistle-blowers, had received a share of the sum — $4.9 million, to be exact. Farmer and Richardson had long felt uneasy about what AseraCare asked them to do. Now, they realized, what they were doing might be illegal. They decided to call James Barger, a lawyer who had represented one of the SouthernCare nurses. That March, he helped Farmer and Richardson file a whistleblower complaint against AseraCare and Golden Living in the Northern District of Alabama, accusing the company of Medicare fraud. The case would go on to become the most consequential lawsuit the hospice industry had ever faced.
The philosophy of hospice was imported to the United States in the 1960s by Dame Cicely Saunders, an English doctor and social worker who’d grown appalled by the “wretched habits of big, busy hospitals where everyone tiptoes past the bed and the dying soon learn to pretend to be asleep.” Her counterpractice, which she refined at a Catholic clinic for the poor in East London, was to treat a dying patient’s “total pain” — his physical suffering, spiritual needs and existential disquiet. In a pilot program, Saunders prescribed terminally ill patients cocktails of morphine, cocaine and alcohol — whiskey, gin or brandy, depending on which they preferred. Early results were striking. Before-and-after photos of cancer patients showed formerly anguished figures knitting scarves and raising toasts.
Saunders’ vision went mainstream in 1969, when the Swiss-born psychiatrist Elisabeth Kübler-Ross published her groundbreaking study, “On Death and Dying.” The subjects in her account were living their final days in a Chicago hospital, and some of them described how lonely and harsh it felt to be in an intensive-care unit, separated from family. Many Americans came away from the book convinced that end-of-life care in hospitals was inhumane. Kübler-Ross and Saunders, like their contemporaries in the women’s-health and deinstitutionalization movements, pushed for greater patient autonomy — in this case, for people to have more control over how they would exit the world. The first American hospice opened in Connecticut in 1974. By 1981, hundreds more hospices had started, and, soon after, President Ronald Reagan recognized the potential federal savings — many people undergo unnecessary, expensive hospitalizations just before they die — and authorized Medicare to cover the cost.
Forty years on, half of all Americans die in hospice care. Most of these deaths take place at home. When done right, the program allows people to experience as little pain as possible and to spend meaningful time with their loved ones. Nurses stop by to manage symptoms. Aides assist with bathing, medications and housekeeping. Social workers help families over bureaucratic hurdles. Clergy offer what comfort they can, and bereavement counselors provide support in the aftermath. This year, I spoke about hospice with more than 150 patients, families, hospice employees, regulators, attorneys, fraud investigators and end-of-life researchers, and all of them praised its vital mission. But many were concerned about how easy money and a lack of regulation had given rise to an industry rife with exploitation. In the decades since Saunders and her followers spread her radical concept across the country, hospice has evolved from a constellation of charities, mostly reliant on volunteers, into a $22 billion juggernaut funded almost entirely by taxpayers.
For-profit providers made up 30% of the field at the start of this century. Today, they represent more than 70%, and between 2011 and 2019, research shows, the number of hospices owned by private-equity firms tripled. The aggregate Medicare margins of for-profit providers are three times that of their nonprofit counterparts. Under the daily-payment structure, a small hospice that bills for just 20 patients at the basic rate can take in more than a million dollars a year. A large hospice billing for thousands of patients can take in hundreds of millions. Those federal payments are distributed in what is essentially an honor system. Although the government occasionally requests more information from billers, it generally trusts that providers will submit accurate claims for payment — a model that critics deride as “pay and chase.”
Jean Stone, who worked for years as a program-integrity senior specialist at the Centers for Medicare and Medicaid Services, said that hospice was a particularly thorny sector to police for three reasons: “No one wants to be seen as limiting an important service”; it’s difficult to retrospectively judge a patient’s eligibility; and “no one wants to talk about the end of life.” Although a quarter of all people in hospice enter it only in their final five days, most of the Medicare spending on hospice is for patients whose stays exceed six months. In 2018, the Office of Inspector General at the Department of Health and Human Services estimated that inappropriate billing by hospice providers had cost taxpayers “hundreds of millions of dollars.” Stone and others I spoke to believe the figure to be far higher.
Some hospice firms bribe physicians to bring them new patients by offering all-expenses-paid trips to Las Vegas nightclubs, complete with bottle service and private security details. (The former mayor of Rio Bravo, Texas, who was also a doctor, received outright kickbacks.) Other audacious for-profit players enlist family and friends to act as make-believe clients, lure addicts with the promise of free painkillers, dupe people into the program by claiming that it’s free home health care or steal personal information to enroll “phantom patients.” A 29-year-old pregnant woman learned that she’d been enrolled in Revelation Hospice, in the Mississippi Delta (which at one time discharged 93% of its patients alive), only when she visited her doctor for a blood test. In Frisco, Texas, according to the FBI, a hospice owner tried to evade the Medicare-repayment problem by instructing staff to overdose patients who were staying on the service too long. He texted a nurse about one patient: “He better not make it tomorrow. Or I will blame u.” The owner was sentenced to more than 13 years in prison for fraud, in a plea deal that made no allegations about patient deaths.
A medical background is not required to enter the business. I’ve come across hospices owned by accountants; vacation-rental superhosts; a criminal-defense attorney who represented a hospice employee convicted of fraud and was later investigated for hospice fraud himself; and a man convicted of drug distribution who went on to fraudulently bill Medicare more than $5 million for an end-of-life-care business that involved handling large quantities of narcotics.
Once a hospice is up and running, oversight is scarce. Regulations require surveyors to inspect hospice operations once every three years, even though complaints about quality of care are widespread. A government review of inspection reports from 2012 to 2016 found that the majority of all hospices had serious deficiencies, such as failures to train staff, manage pain and treat bedsores. Still, regulators rarely punish bad actors. Between 2014 and 2017, according to the Government Accountability Office, only 19 of the more than 4,000 U.S. hospices were cut off from Medicare funding.
Because patients who enroll in the service forgo curative care, hospice may harm patients who aren’t actually dying. Sandy Morales, who until recently was a case manager at the California Senior Medicare Patrol hotline, told me about a cancer patient who’d lost access to his chemotherapy treatment after being put in hospice without his knowledge. Other unwitting recruits were denied kidney dialysis, mammograms, coverage for lifesaving medications or a place on the waiting list for a liver transplant. In response to concerns from families, Morales and her community partners recently posted warnings in Spanish and English in senior apartment buildings, libraries and doughnut shops across the state. “Have you suddenly lost access to your doctor?” the notices read. “Can’t get your medications at the pharmacy? Beware! You may have been tricked into signing up for a program that is medically unnecessary for you.”
Some providers capitalize on the fact that most hospice care takes place behind closed doors, and that those who might protest poor treatment are often too sick or stressed to do so. One way of increasing company returns is to ghost the dying. A 2016 study in JAMA Internal Medicine of more than 600,000 patients found that 12% received no visits from hospice workers in the last two days of life. (Patients who died on a Sunday had some of the worst luck.) For-profit hospices have been found to have higher rates of no-shows and substantiated complaints than their nonprofit counterparts, and to disproportionately discharge patients alive when they approach Medicare’s reimbursement limit.
“There are so many ways to do fraud, so why pick this one?” Stone said. This was more or less what Marsha Farmer and Dawn Richardson had been wondering when they filed their complaint against AseraCare in 2009. Now, working undercover, they imagined themselves as part of the solution.
In the absence of guardrails, whistleblowers like Farmer and Richardson have become the government’s primary defense against hospice wrongdoing — an arrangement that James Barger, their lawyer, describes as placing “a ludicrous amount of optimism in a system with a capitalist payee and a socialist payer.” Seven out of 10 of the largest hospices in the U.S. have been sued at least once by former employees under the federal False Claims Act. The law includes a “qui tam” provision — the term derives from a Latin phrase that translates as “he who sues on behalf of the King as well as himself ” — that deputizes private citizens to bring lawsuits that accuse government contractors of fraud and lets them share in any money recovered. Qui-tam complaints, like Farmer and Richardson’s, are initially filed secretly, under seal, to give the Justice Department a chance to investigate a target without exposing the tipster. If the government decides to proceed, it takes over the litigation. In 2021 alone, the government recovered more than $1.6 billion from qui-tam lawsuits, and the total amount awarded to whistleblowers was $237 million.
In the two years after Farmer and Richardson filed their complaint, both slept poorly. But their covert undertaking also felt cathartic — mental indemnification against a job that troubled their consciences. Farmer continued to bring in patients at AseraCare while passing company documents to Barger, including spreadsheets analyzing admissions quotas and a training PowerPoint used by the company’s national medical adviser, Dr. James Avery. A pulmonologist who was fond of citing Seneca, Tolstoy and Primo Levi in his slides, Avery urged nurses to “be a detective” and to “look for clues” if a patient didn’t initially appear to fit a common hospice diagnosis. (Avery said that he never encouraged employees to admit ineligible patients.) He sometimes concluded his lectures with a spin on an idea from Goethe’s “Faust”: “Perpetual striving that has no goal but only progress or increase is a horror.”
Barger was impressed by the records that Farmer collected and even more so by her candor about her involvement in AseraCare’s schemes. She and Richardson reminded him of friends he’d had growing up: smart, always finishing each other’s sentences and not, he said, “trying to be heroes.” Nor, as it turned out, were they the only AseraCare employees raising questions about company ethics. The year before, three nurses in the Milwaukee office had filed a qui-tam complaint outlining similar corporate practices. The False Claims Act has a “first to file” rule, so the Wisconsin nurses could have tried to block Farmer and Richardson from proceeding with their case. Instead, the nurses decided to team up with their Alabama colleagues, even if it meant that they’d each receive a smaller share of the potential recovery. Also joining the crew was Dr. Joseph Micca, a former medical director at an AseraCare hospice in Atlanta. Every hospice is required to hire or contract with a doctor to sign forms certifying a patient’s eligibility for the program, and Micca accused the company of both ineligible enrollments and lapses in patient care. In his deposition, he described one patient who was given morphine against his orders and was kept in hospice care for months after she’d recovered from a heart attack. The woman, who was eventually discharged, lived several more years.
Among the most critical pieces of evidence to emerge in the discovery process was an audit that echoed many of the allegations made by the whistleblowers. In 2007 and 2008, AseraCare had hired the Corridor Group, a consulting firm, to visit nine of its agencies across the country, including the Monroeville office that Farmer oversaw. The Corridor auditors observed a “lack of focus” on patient care and “little discussion of eligibility” at regular patient-certification meetings. Clinical staff were undertrained, with a “high potential for care delivery failures,” and appeared reluctant to discharge inappropriate patients out of fear of being fired. Emails showed that the problems raised by the audit were much discussed among AseraCare’s top leadership, including its vice president of clinical operations, Angie Hollis-Sells.
One morning in the spring of 2011, Hollis-Sells strode into the old bank building that housed the Monroeville office, her expression uncommonly stern. Farmer knew at once that her role in the case had been exposed. She was sent home on paid leave, and that evening half a dozen colleagues showed up at her clapboard house in the center of town. Some felt betrayed. Their manager had kept from them a secret that might upend their livelihoods; worse, her accusations seemed to condemn them for work she’d asked them to do. But shortly afterward, when Farmer took a job as the executive director of a new hospice company in Monroeville, Richardson and several other former co-workers joined her.
Less than a year later, the Justice Department, after conducting its own investigation, intervened in the whistleblowers’ complaint, eventually seeking from AseraCare a record $200 million in fines and damages. As Barger informed his clients, the company was likely to settle. Most False Claims Act cases never reach a jury, in part because trials can cost more than fines and carry with them the threat of exclusion from the Medicare program — an outcome tantamount to bankruptcy for many medical providers. In 2014, Farmer traveled to Birmingham for her deposition, imagining that the case would soon end. But, in the first of a series of unexpected events, AseraCare decided to fight.
United States v. AseraCare, which began on Aug. 10, 2015, in a federal courthouse in Birmingham, was one of the most bizarre trials in the history of the False Claims Act. To build its case against AseraCare, the government had identified some 2,100 of the company’s patients who had been in hospice for at least a year between 2007 and 2011. From that pool, a palliative care expert, Dr. Solomon Liao, of the University of California, Irvine, reviewed the records of a random sample of 233 patients. He found that around half of the patients in the sample were ineligible for some or all of the hospice care they’d received. He also concluded that ineligible AseraCare patients who had treatable or reversible issues at the root of their decline were unable to get the care they needed, and that being in hospice “worsened or impeded the opportunity to improve their quality of life.”
Before the trial started, the judge in the case, Karon O. Bowdre, disclosed that she’d had good experiences with hospice. Her mother, who had an ALS diagnosis, had spent a year and a half on the service, and her father-in-law had died in hospice shortly before the trial. Principals in the case disagree about whether she disclosed that the firm handling AseraCare’s defense, Bradley Arant, had just hired her son as a summer associate.
The defense team had petitioned Bowdre to separate the proceedings into two parts: the first phase limited to evidence about the “falsity” of the 123 claims in question, and the second part examining, among other things, the company’s “knowledge of falsity.” The Justice Department objected to this “arbitrary hurdle,” arguing that the purpose of the False Claims Act was to combat intentional fraud, not accidental mistakes. “The fact that AseraCare knowingly carried out a scheme to submit false claims is highly relevant evidence that the claims were, in fact, false,” the government wrote. Nonetheless, in an unprecedented legal move, Bowdre granted AseraCare’s request.
Trial lawyers are expected to squabble over the relevance of the opposing party’s evidence — and, in the private sector, they are compensated handsomely for doing so. But the government lawyers seemed genuinely confused about what the judge would and wouldn’t allow into the courtroom during the trial’s “falsity” phase. In long sidebar discussions, during which jurors languished and white noise was piped in through the speakers, Bowdre berated the prosecution for its efforts to “poison the well” with “all this extraneous stuff that the government wants to stir up to play on the emotions of the jury.” Much of her vexation was directed at Jeffrey Wertkin, one of the Justice Department’s top picks for difficult fraud assignments. A prosecutor in his late 30s, he had a harried, caffeinated air about him and had helped bring about settlements in more than a dozen cases. This was only his second trial, however, and Bowdre was reprimanding him like a schoolboy. “It made me sick to watch her treatment of him,” Henry Frohsin, one of Barger’s partners, recalled. “At some point, I couldn’t watch it, so I just got up and left.”
The judge’s prohibition on “knowledge” during the trial’s first phase constrained testimony in sometimes puzzling ways. Richardson, for instance, could talk about admitting patients, but she couldn’t allude to the pressure she was under to do so. The audit by the Corridor Group that corroborated whistleblower claims was forbidden because it wasn’t directly tied to the specific patients in the government’s sample. Micca, the former medical director from Atlanta, was not allowed to testify for the same reason. Nonetheless, over several days, the government’s witnesses managed to paint a picture of AseraCare’s cavalier attitude toward patient eligibility. Its medical directors were part time, as is common in the industry, and workers testified that they’d presented these doctors with misleading patient records to secure admissions. One said that a director had pre-signed blank admissions forms. “Ask yourself: How could a doctor be exercising their clinical judgment,” Wertkin told the jury at one point, “if he’s signing a blank form?”
When Farmer took the stand, Wertkin asked if she was nervous. “A lot nervous today,” she replied. She thought the jurors might judge her for trolling for wheelchair ramps or other recruitment tactics. She needn’t have worried. Bowdre’s restrictions prevented Farmer from testifying about much of anything. “I felt like the judge did not want to know the truth,” she said. “The whole time that I was on the stand, I kept thinking, Why would you not listen to the story?”
The bulk of phase one was dominated by doctors: Liao, the government’s expert, read selections from thousands of pages of medical files to explain why he’d concluded that patients were ineligible, and AseraCare’s medical experts took the stand and disagreed with most of his conclusions. However, the crux of AseraCare’s defense was that the entire debate about eligibility was essentially moot because, although death is certain, its timing is not. A medical director who signed a hospice certification form would have had no way of anticipating whether a patient’s illness would deviate from the expected trajectory of decline. Even Medicare, the defense team emphasized, has noted that predicting life expectancy is “not an exact science.”
After nearly two months of testimony, the jurors deliberated for nine days on phase one. On Oct. 15, 2015, they found 86% of the patient sample ineligible for some period of hospice care. Elated, Barger rushed out of the courtroom to call Farmer and tell her that the jury had come back overwhelmingly in the government’s favor. The next part of the trial will be icing on the cake, she remembers thinking.
The next part never happened. A few days later, Bowdre made a startling announcement: She had messed up. The instructions that she’d given the jury had been incomplete, she said, and because of this “major reversible error” she was overturning the jury’s findings and granting a request by AseraCare for a new trial. She invited the government to submit evidence other than Liao’s opinion to prove that the claims were false; the government replied that the record presented ample evidence of falsity. Five months later, in March 2016, Bowdre granted summary judgment to AseraCare.
It’s unusual for a judge to overturn a jury’s findings, order a new trial and then declare summary judgment on her own accord, Zack Buck, a legal scholar at the University of Tennessee who studies health care fraud, told me. The case, he said, “just kept getting weirder.” Wertkin, who had expected to return to Washington, D.C., with that rare article — a jury verdict in a False Claims Act case — later said he felt as though the “rug had been ripped out from under me.”
In a widely circulated opinion, Bowdre wrote that clinical disagreement among doctors was not enough on its own to render a claim false. Otherwise, hospice providers would be subject to liability “any time the Government could find a medical expert who disagreed” with their physician, and “the court refuses to go down that road.” The Justice Department appealed Bowdre’s ruling, but many in the hospice industry celebrated the opinion. “There are huge implications,” Buck said. “So much of our system is based on a doctor’s discretion, and if you can’t say the doctor is wrong you’ve really hamstrung the government’s ability to bring these kinds of cases.” In op-eds and on the lecture circuit, defense lawyers for health care companies hailed the beginning of a post-AseraCare era.
That year, Dr. Scott Nelson, a family practitioner in Cleveland, Mississippi, was wrapping up a lucrative tour of duty in the hospice trade. Since 2005, Nelson had referred approximately 763 patients to 25 hospices, 14 of which employed him as the medical director, according to a special agent in the Department of Health and Human Services’ Office of Inspector General. Some of Nelson’s patients, however, didn’t know that they were dying and a decade or more later remained stubbornly alive.
In the course of roughly six years, by the doctor’s own account, he received around $400,000 for moonlighting as the medical director at eight of the companies. Meanwhile, those hospice owners, some of whom were related to one another, received a total of more than $15 million from Medicare for the patients he’d certified. In a scheme that the special agent, Mike Loggins, later testified was spreading across the Mississippi Delta “like cancer,” hospices bused in vans of people to Nelson’s clinic. The owner of Word of Deliverance Hospice — one small-town provider that briefly put Nelson on its payroll — bought a $300,000 Rolls-Royce that was later confiscated by the government. Nelson, who was convicted earlier this year of seven counts of health care fraud, told me that he’d fallen victim to greedy hospice entrepreneurs who had done hundreds of “third-grader-level forgeries” of his signature when racking up illegal enrollments, and that he’d assumed other forms he’d signed were truthful. Nelson awaits sentencing and has filed a motion challenging the verdict.
The Mississippi Delta has an acute shortage of primary-care providers — a problem that contributes to the region’s poor health outcomes. When I visited some of the fraud victims in the case, all of whom were Black, they told me that the experience of being duped had deepened their mistrust of a health care system that already seemed out of reach. Some of the patients Nelson had approved for hospice were in their 40s and 50s. One had cognitive disabilities, and another couldn’t read. Marjorie and Jimmie Brown, former high school sweethearts in their 70s, found out that they had been enrolled in Lion Hospice only in 2017, when Loggins knocked on the front door of their yellow brick bungalow. A worker for Lion had tricked the Browns into trading away their right to curative care, and Nelson — whom they’d never heard of, let alone seen — was one of two doctors whose names were on the paperwork.
Losing access to care is hardly the only thing that can go wrong for patients inappropriately assigned to hospice. In May 2016, Lyman Marble found his wife, Patricia, unresponsive and lying face down in their bed. At a hospital near their home in Whitman, Massachusetts, doctors were shocked by the high doses of opiates she’d been prescribed. An addiction specialist later observed that she was ingesting the equivalent of dozens of Percocet pills a day. Only after Lyman told the doctors to “flush her out like Elvis” did her family come to suspect that her health crisis was caused by hospice care itself.
The Marbles, who had been married for more than 50 years, worked together in a variety of jobs, among them operating an outer-space-themed carnival ride. Five years earlier, Patricia had been admitted to a hospice owned by Amedisys, the third-largest provider in the country. The diagnosis was end-stage chronic obstructive pulmonary disease.
She was 70 years old and had health troubles: She used a wheelchair and supplemental oxygen, and had diabetes, hypertension and a benign tumor that caused her pain. That pain had been treated by a fentanyl patch, but once she was in hospice the medical director, Dr. Peter Roos, prescribed morphine, Vicodin, Ativan and gabapentin, too. Over the next five years, he kept prescribing narcotics, recertifying her for hospice 30 times. (Roos, who said in a deposition that he prescribed morphine to ease Marble’s respiratory distress, did not respond to requests for comment.) Court documents later revealed that cash bonuses were a reward for good enrollment numbers at that branch of Amedisys, and that nurses had resigned after being pressured to admit and recertify patients who they didn’t think were dying.
While under the care of Amedisys, Patricia sometimes couldn’t remember who or where she was. “I felt like I was dead,” she later said. “It just made me feel like ‘That’s right, I’m in the right place because I’m going to die.’” But after Lyman learned that he could “fire hospice,” as he put it, and Patricia was slowly weaned from narcotics, her memory began to return and her breathing improved. Lyman, who had thought that he might lose his wife at any moment (at one point, Amedisys had asked if he was making funeral arrangements), was stunned by her transformation. Today, more than a decade after first enrolling in hospice, Patricia remains opioid-free and has described her lost years as like being on “the moon or someplace.” For that misadventure, the company billed Medicare almost half a million dollars. Last year, Amedisys settled a suit brought by the Marbles for $7.75 million. The company declined to comment, stating that the settlement was confidential.
Because pinpointing what constitutes a “good death” is nearly as difficult as determining what makes a good life, families may not always realize when hospice is failing them — even when they work in the industry. In November 2014, Carl Evans, a 77-year-old former janitor from Orange County, took a fall and, when hospitalized, was tentatively diagnosed as having end-stage thymus cancer. Soon after, he was discharged to a nursing home and enrolled in a hospice run by Vitas, one of the largest providers of end-of-life care in the United States. Andrea Crawford, one of his daughters, was a hospice nurse and had worked for the company early in her career. When she visited her father in his private room, which had a sofa and a flat-screen TV, he told her that he was being treated “like a king.”
Evans had been living independently, with his longtime girlfriend, before his fall. And, unlike many hospice patients, he remained mobile and gregarious, with a big appetite much noted in his charts. Early in the morning of Nov. 22, in search of a non-institutional meal, he climbed out a window and got on a bus to his girlfriend’s house. (His preferred ride, a lovingly maintained burgundy Trans Am, was unavailable.) A family friend eventually located him, 30 miles away.
On Evans’ return, Dr. Thomas Bui, a medical director at Vitas, placed an urgent order for him to receive phenobarbital, a barbiturate that is sometimes prescribed for agitation and can cause extreme drowsiness. A few days later, Vitas records show, Bui added Keppra, an anti-seizure medication that also has sedative properties, to the mix. Evans had no known history of seizures, and Crawford later suspected that the two drugs had been prescribed to subdue him for the convenience of the staff. After the addition of Keppra, his chart shows, Evans became wobbly on his feet and then so lethargic that he couldn’t get out of bed — though he remained alert enough to be terrified at his sudden decline. Crawford, concerned, attributed the change to the drugs he was taking, as did a Vitas employee, according to medical records. On Dec. 6, Evans died.
The official cause of death was cancer (hospice patients are not typically given autopsies), but Evans’ family filed a suit against Vitas and Bui. The lawsuit was settled, and Vitas denies allegations of wrongdoing. Bui, who said in a deposition that he medicated Evans to soothe his agitation, didn’t respond to requests for comment. The California medical board disciplined him for his handling of the case. He was placed on a three-year probation, during which he was prohibited from practicing alone, and was ordered to take a course on safe prescribing.
Malpractice cases against hospices are rare. As Reza Sobati, an elder-abuse lawyer who represented Evans’ family, told me: “The defense we often get in a nursing home case is that they were going to die anyway from their issues. That’s even harder to overcome with hospice, since a doctor has literally certified it will happen.”
Afterward, as Crawford reviewed medical charts and tried to understand what had happened to her father, she came across some notes that surprised her. When Evans entered hospice, Vitas had certified him for a heightened level of care intended for patients with uncontrolled pain or severe and demanding symptoms, which Evans didn’t have. As a hospice nurse, Crawford knew that such coding allowed Vitas to bill Medicare more — roughly four times more — per day than the rate for a routine patient. (Vitas denies inappropriate billing.)
In 2016, not long after Judge Bowdre dismissed the AseraCare case, someone began to anonymously contact companies that were the subjects of sealed qui-tam complaints. Those sealed complaints named the whistleblowers and the details of their accusations — information that the accused companies could use to get ahead of government investigators and their subpoenas or possibly to intimidate informers into silence. When a general counsel at a tech firm returned the mysterious voicemail, the insider, who called himself Dan, offered to share a complaint that named the company in exchange for a “consulting fee” of $300,000, preferably paid in bitcoin.
The lawyer alerted the FBI and began recording his conversations with Dan, including one arranging the handoff of the documents in Silicon Valley. On the morning of Jan. 31, 2017, Dan texted an FBI agent posing as one of the tech company’s employees the address of a hotel in Cupertino and instructed him to sit in the lobby on “a chair with a newspaper on it” just past “the water station.” Moments after the undercover agent sat down, Dan approached him with a copy of the complaint and was arrested. It turned out that Dan, who the FBI said was disguised in a wig, was the former government prosecutor Jeffrey Wertkin.
By then, Wertkin had left the Department of Justice to become a partner at the elite law firm Akin Gump, a job that paid $450,000 a year. His bio on the company’s website noted that, after leading more than 20 fraud cases, he had “first-hand knowledge of the legal and practical considerations that shape government investigations.” As part of a plot that his former Justice Department colleagues termed “the most serious and egregious example of public corruption by a DOJ attorney in recent memory,” Wertkin had, on his way out the door, taken at least 40 sealed qui-tam complaints belonging to the Civil Fraud Section.
He later ascribed his short-lived criminal spree, which his defense team compared to “a scene out of a B-grade action movie,” to what had occurred in Judge Bowdre’s courtroom. Wertkin’s wife said in a letter to the court that he had returned home from the AseraCare trial a “shell of a man” who drank heavily and spent several days watching movies on his phone in bed. Wertkin, who pleaded guilty in 2017 and was sentenced to two and a half years in prison, wrote in a statement that the government’s reversal of fortune in the case had led him “to question things I never doubted before. Does the system even work?” At his sentencing hearing, a prosecutor argued that the False Claims Act itself was one of Wertkin’s victims. “The False Claims Act is incapable of deterring fraud if the Department of Justice can’t be trusted by whistleblowers,” she said. “We have no way of measuring what chilling impact there might be on whistleblowers based on what the defendant did in compromising their secrecy.”
On Sept. 9, 2019, the False Claims Act took a second hit when the U.S. Court of Appeals for the Eleventh Circuit published a long-anticipated ruling on the AseraCare case. The judges concurred with Bowdre that the government needed more than the testimony of an outside expert to prove a claim was false. However, they vacated Bowdre’s summary judgment, saying that the prosecution should have been able to present all its evidence, including AseraCare’s alleged “knowledge of falsity,” and sent the case back to her courtroom for a retrial. “When the goalpost gets moved in the final seconds of a game,” the judges wrote, “the team with the ball should, at the least, have one more opportunity to punch it into the endzone.”
The government did not appear enthusiastic about trying the AseraCare case for a second time before Bowdre, though. Wertkin had been disbarred and was serving his sentence, and some of his former colleagues had left for the private sector. In February, 2020, 11 years after Farmer and Richardson filed their complaint, the government reached a settlement with AseraCare for a million dollars. As in most such settlements, AseraCare paid the sum, admitted no wrongdoing and was allowed to keep billing Medicare. Jack Selden, a partner at Bradley Arant who worked on the defense team, told the trade journal Law360, “When a case settles for $1 million where the claims have been for over $200 million, I think that speaks for itself.”
From a certain point of view, Wertkin’s attempts to shake down government contractors made manifest the transactional logic that governs the False Claims Act. Even to some of their biggest beneficiaries, these qui-tam settlements have come to resemble a mutual-protection racket: Executives keep their jobs and their companies keep billing Medicare; whistleblowers and their lawyers get a cut; and Justice Department attorneys can cash in on their tough-on-fraud reputations by heading to white-shoe law firms to defend the companies they once prosecuted.
In 2020, not long after AseraCare settled with the government, the company was bought for $235 million by Amedisys, which was facing qui-tam troubles of its own. A nurse from an Amedisys office in South Carolina had filed a lawsuit accusing the corporation of admitting ineligible patients, falsifying paperwork and handing out bonuses to staff to entice new recruits. (Amedisys denies the allegations.) This time, the government has declined to join the nurse’s case.
Earlier this year, when I visited Farmer at her home in Alabama, boxes were piled in the living room. She was preparing for an upcoming move to Missouri, where her husband had taken a job with a nonprofit hospice and home health company. Farmer had remained close with Richardson, who told me: “I have a whole different view of justice in America now. It’s definitely powered by the dollar bill.” But the women no longer talked about the trial. “Nobody really cared,” Farmer said. “The government didn’t care, the judge didn’t care, and all of these people’s money was wasted.” Sitting in a plush reclining chair, Farmer let out a short, sharp cough as she spoke. In December, she had been diagnosed as having an aggressive form of breast cancer, and the chemotherapy had left her vulnerable to lingering infections.
The hospice benefit imposes a dichotomy between caring for the living and caring for the dying, when, in truth, the categories are often indistinguishable. Most older people will face a chronic disability or a disease in the last years of their life and will need extra care to remain safely at home. That help is rarely available, and Americans often end up in a social-welfare purgatory, forced to spend down their savings to become eligible for a government-funded aide or a nursing home bed. “We all think it’s not going to affect us, but if you have a stroke and go bankrupt you’re not just going to go out and shoot yourself in the desert,” Dr. Joanne Lynn, an elder-care advocate and a former medical officer at the Centers for Medicare and Medicaid Services, told me. Once you cross over into the kingdom of the sick, she said, it’s easier to see that some problems classified as hospice fraud are really problems of the inadequate long-term-care system in this country.
In the 1970s, Lynn worked at one of the first hospices in the United States. At the time, most of the patients had cancer and died within weeks; the six-month guidance was originally designed around their needs. Today, the majority of hospice patients have chronic illnesses, including heart disease and dementia. And some of them — regardless of whether they have six months or six years to live — depend on hospice for in-home support and holistic services that would otherwise be unavailable. Yet under the current system, as the number of patients with ambiguous prognoses rises, providers (including ethical ones) are under financial pressure to abandon those who don’t die quickly enough. It’s a typically American failure of imagination that people with dire but unpredictable declines are all but left for dead.
Elisabeth Kübler-Ross thought she understood why societies isolate the old and the dying: They remind the rest of us of our own mortality. This aversion might partly explain why decades of warnings about hospice care — including a full quarter century of pointed alerts from the inspector general’s office at the Department of Health and Human Services — have gone largely unheeded. Recently, though, some of the reports were so disturbing (maggots circling feeding tubes, crater-like bedsores) that members of Congress have called for reforms, and the Centers for Medicare and Medicaid Services is enacting a few. The agency has just begun making available to the public a greater range of data on hospice providers, including the average number of visits that nurses and social workers make in the last days of a person’s life. More significantly, the agency now has the power to impose fines on problem providers, should it choose to use it. (Previously, the agency’s only consequential penalty for bad hospices was to boot them from the Medicare program, an option it seldom exercised.)
Some state lawmakers, too, are asking deeper questions about end-of-life care. This year, in the wake of a Los Angeles Times investigation, California placed a moratorium on new hospices, and state auditors raised alarms about a raft of tiny new hospices, some with fictional patients and medical staff, that were engaged in “a large-scale, targeted effort to defraud Medicare.” In Los Angeles County alone, there are more than a thousand hospices, 99% of them for-profit. By comparison, Florida, which, unlike California, requires new providers to prove a need for their services, has 51 hospices.
But when regulators close a door they sometimes open a window. Licensing data I’ve reviewed suggests that, as scrutiny of end-of-life-care providers intensified in California, the hospice boom traveled eastward. In Clark County, which contains Las Vegas, the number of new hospices has more than doubled in the past two years, and in Harris County, which encompasses Houston, the number has grown almost as quickly. Sheila Clark, the president of the California Hospice and Palliative Care Association, attributed some of the surge in new licenses to a scheme called “churn and burn.”
“Providers open up a hospice and bill, bill, bill,” she said. Once that hospice is audited or reaches the Medicare-reimbursement limit, it shuts down, keeps the money, buys a pristine license that comes with a new Medicare billing number, transfers its patients over and rakes in the dollars again. The directors of two nonprofit hospices in the Southwest told me that they had been accepting patients who were fleeing such new providers. Some patients switched because while they were with the startup hospices they hadn’t seen a nurse in two weeks, and no one was answering the phone.
On a rainy morning in November, I found myself in a vast, sand-colored commercial plaza on the outskirts of Phoenix. The complex was designed in the style of a Spanish hacienda, with a central courtyard, a stone fountain and a stately bell tower. Maricopa County was another place where the number of hospices had doubled in two years; 33 new ones, licensing data indicated, had appeared at this single address. There was no building directory, but eventually I realized that most of the hospices were clustered together on the basement level. All the hospices listed the same phone number for inspectors to call, and some had taped the same apology to their door: “Sorry we missed you! We’ll be back in 45 mins, if you need immediate assistance pls call us.” Each time I called the listed number, I got an answering machine whose mailbox was full.
When I buzzed the Ring video doorbell of B-116, which housed at least nine hospices, I was told by the man who answered that the manager was currently on the other side of the building. When I walked to the other side and rang B-117, the same man picked up. Sensing my confusion, he said, “I’m just the voice at the door.” His name was Ted Garcia, and he had been hired to monitor the hospices from his laptop at home. I told him that I was searching for a registered nurse named Svetik Harutyunyan, who was listed as the CEO of multiple hospices in the neighborhood, among them Ruby, Sapphire and Garnet, which were within the complex, as well as Platinum, Bright Star and First Light, down the road. I told Garcia that I particularly wanted to ask Harutyunyan about Ruby Hospice, which I’d seen listed for sale in an online ad for a quarter of a million dollars.
The day before, I’d searched for her at a squat building in Los Angeles that had drawn auditors’ attention. That address holds, according to state records, 129 hospices — a tenth of the city’s supply. When I knocked on the door of a hospice that the licensing data had linked to Harutyunyan, a worker told me that no one by that name was involved. Later, when Harutyunyan and I spoke by phone, she acknowledged owning hospices in California and Arizona and said that the arrangement was legal. She had wanted every member of her family to have one, she said.
Garcia told me through the doorbell that, as far as he understood, the hospices he monitored weren’t seeing actual patients; instead, the offices were a kind of “holding pen” to keep the licenses viable with requisite physical addresses until demand could be drummed up. The remote work was dull, he allowed. Apart from inspectors occasionally stopping by and transient people defecating outside the doors at night, my visit was the most action he’d seen in months. As the rain let up and I sat in the deserted courtyard trying to decide which of Harutyunyan’s holdings to visit next, it occurred to me that this world of paper hospices — empty of patients, valued at six figures, watched over by virtual guards — might be the clearest expression of the industry’s untamed frontier that I was going to encounter.
Later that afternoon, Garcia told me that he’d begun to research whether he could open a hospice himself. The market was bigger and more lucrative than he’d realized. People in Montana and Texas and Tennessee, he said, were posting ads online for “turnkey-ready hospices” for as much as half a million dollars. He called an ex-cop he knew to see if he wanted in. “We can turn a profit and split it,” he said.
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Liberian immigrants in Fargo gather for a cookout in the garage of Teta Roberts, which they affectionately call the 'Noisy Grill.' (photo: Dan Koeck/WP)
The Liberian immigrants had tried to keep a low profile since someone — a stranger? a neighbor? — distributed hundreds of fliers labeling them a threat to White children. A mile away, people woke up one September morning to small plastic bags on their lawns containing a picture of a Liberian man who had recently been convicted of killing a 14-year-old girl in Fargo. The caption invoked a racist theory that foreigners of color are “replacing” White Americans in the United States: “THE GREAT REPLACEMENT AND ITS CONSEQUENCES.”
The victim’s father had appeared in court with who he called “pro-White advocates.” Anti-Black stickers and graffiti showed up on streetlights and buildings, including the international grocery store where Behyee shopped.
The 37-year-old hospital chef had survived two civil wars that killed a quarter million Liberians between 1989 and 2003. He wore Old Navy jeans over the bullet scar on his left knee and black Vans over the one of his right foot.
“I came here for safety,” he said in Teta’s garage, where West Africans who’d fled the conflict often gathered to eat. “It feels like the safety is disappearing.”
Behyee wasn’t sure what “Great Replacement” meant until he asked a co-worker. The definition bewildered him: People actually believed that Western elites, controlled by Jews, were plotting a “migrant invasion” to wrest power from conservative White voters?
The theory hinged on the idea that all Black immigrants backed Democrats, which he found laughable: Behyee hoped to vote for Donald Trump in 2024. A Lutheran charity had brought most of his Liberian friends to North Dakota so they could live in peace — not fulfill the electoral bidding of imaginary puppet masters.
Behyee’s exasperation — “ridiculous! just ridiculous!” — chilled to fear upon reading about the mass shooters who have referenced the Great Replacement.
The White man who opened fire in a Pittsburgh synagogue in 2018, killing 11, had blamed Jews for bringing immigrant “invaders” to the United States. The White man who gunned down 23 people at an El Paso Walmart in 2019 told police he’d targeted Mexicans after rambling about the “Hispanic Invasion of Texas.” The White man who targeted Black shoppers and employees at a Buffalo supermarket last May, killing 10, had written that African Americans were part of a conspiracy to “ethnically replace my own people.”
Were the Liberians in North Dakota at risk, too? Could the Afrobeat music at their cookout bring danger?
“You always want to be alert,” Behyee said, fidgeting in his foldout chair. “Just in case.”
The Great Replacement, a doctrine of the Ku Klux Klan and other white supremacist groups for decades, has lately been finding a bigger audience.
Tucker Carlson, one of the nation’s most popular cable television hosts, name-checked it last year in a monologue about Haitian migrants seeking asylum in Texas. President Biden wanted to “change the racial mix of the country” with lax border control, Carlson said. “In political terms, this policy is called the ‘Great Replacement,’” he said. “The replacement of legacy Americans with more obedient people from faraway countries.”
Such rhetoric has become a pillar of far-right rallies with animosity aimed at undocumented immigrants. Days before Behyee’s cookout, Marjorie Taylor-Greene (R-Ga.) told an Arizona audience that outsiders were “on the verge of replacing you, replacing your jobs and replacing your kids in school and, coming from all over the world, they’re also replacing your culture.”
Similar language has emerged on racist leaflets nationwide as politicians amplify it, said Jeff Tischauser, a research analyst at the Southern Poverty Law Center who tracks the spread of white supremacist propaganda.
“It is such a low-effort way to recruit and terrorize,” he said, “and create that psychological trauma for the targeted groups.”
Tangy smoke filled Teta’s garage. Even in light jacket weather, the group of immigrants kept the door shut. They’d taken a cue from the area’s Liberian churches, which had begun bolting their entrances during service.
They feared someone — a stranger, a neighbor — could show up with a gun.
The Fliers
Daisy “Jupiter” Paulsen, 14, was skateboarding from her father’s house to her mother’s in June 2021 when Arthur Kollie, 23, attacked her with a knife. He stabbed her more than 20 times outside a Party City, police said, seemingly at random.
The girl died days later. The Fargo mayor, police chief and county sheriff attended her public memorial. Soon after, Jupiter’s face began appearing on white supremacist propaganda.
On the anniversary of her death, members of a group known for peddling racist and antisemitic conspiracies marched through Fargo, holding signs that said, “Justice for Jupiter.” Four months later, following Kollie’s murder conviction, fliers the size of postcards landed before dawn in the yards of a mostly White neighborhood near an elementary school. They came in plastic bags packed with dried corn — probably to make them easier to throw, officers noted at the scene.
The front featured photos of Jupiter and Kollie. (“THE GREAT REPLACEMENT AND ITS CONSEQUENCES.”) The back directed people to the websites of a white supremacist network that took credit for distributing racist fliers across the Upper Midwest. “Do you really want your children to become a hated minority in their own country?” the group wrote.
Police announced an investigation, asking residents to share home security camera footage that might reveal the culprit. Officers were able to identify only a suspicious sedan.
“It’s not a crime to hurt feelings, though,” a man commented on the West Fargo Police Department’s Facebook page.
“I’m surprised to see community members being so utterly dismissive about racist propaganda being left in our streets,” a woman shot back.
“What’s to Investigate?” another man asked. “We do have free speech rights here In America.”
The police chief, Denis Otterness, tried to explain to disgruntled callers: Yes, he respected the First Amendment, but at the very least, whoever scattered the fliers had violated a littering ordinance. They could have damaged property. They could face fines.
“We want our neighbors to feel welcome here,” he said.
That sense of welcome is fragile, said Ebenezer Saye, president of the state Liberian association.
When the first group of Liberians resettled here about two decades ago, they confronted some misunderstandings. Neighbors used to call the police, characterizing their lively conversations as aggressive. (“We’re not fighting,” Saye said. “We’re just loud.”) Co-workers complained about the smell of Liberian lunches. (Maybe they weren’t accustomed to West African spices.)
Saye met with city officials. He shared bowls of fufu, or cassava balls in pepper soup, with the police chief and mayor. Liberians had an important role to play here, he recalled telling them. They filled factory, health care and child care jobs that sat vacant. They paid property taxes.
Over time, tensions eased.
“We felt this place was heaven,” Saye said. “People could live here without threat or intimidation.”
After Jupiter’s murder, Saye reached out to her father, Robert Paulsen, expressing his heartbreak and horror. Saye didn’t know the killer, but he’d heard about Kollie walking in the snow without clothes. (During the murder trial, Kollie’s sister said he talked to himself and saw things that weren’t there.)
“This innocent child did nothing to deserve this,” Saye recalled telling Paulsen. “We are all with you.”
The men agreed to a meeting. Saye, who has eight children, wore a shirt that said “DAD” in solidarity with Paulsen. They shook hands. Paulsen, a welder at a tractor factory, said he worked with several Liberians.
He accepted Saye’s invitation to a candlelight vigil for Jupiter.
“I know there are racist people out there who have a lot of hatred, but we come from some of the same backgrounds,” Paulsen said at the time, according to the local newspaper. “If anything happens, tell me and I’ll stand in the way.”
Then Peter Tefft got involved.
‘Relentless’ outreach
Paulsen, 40, wears his daughter’s ashes in a silver music note around his neck. At the time of her death, Jupiter had been teaching herself to play the acoustic guitar he gave her. She wrote poems and recited them on TikTok: I wish I was the rain so I could be free. She made flower crowns for toddlers at the park.
“I went from being a happy dad to my worst nightmare come true,” Paulsen said one morning last month, leaning against his pickup truck in the parking lot of a health center, where his 13-year-old son was in counseling.
When the news broke, the Liberian community’s support touched Paulsen. Then life for the rest of Fargo seemed to return to normal, and he felt isolated in his grief. One man who’d contacted him right away on Facebook kept sending messages, Paulsen said.
Peter Tefft had marched in the 2017 Unite the Right rally in Charlottesville, where white supremacists raised their arms in Hitler salutes and chanted, “Jews will not replace us.” After a neo-Nazi sped his car into counterprotesters, killing one and injuring 35, Tefft’s father published an open letter in the Fargo newspaper, condemning his son’s attendance as “vile, hateful and racist.” (Tefft did not respond to requests for comment.)
Paulsen didn’t know much about Tefft, but he appreciated the outreach. They started chatting on an encrypted app.
“He was relentless,” Paulsen said. “He kept saying they could do more. He said things that I had already pointed out: that if the justice system had done their damn job, my kid would still be here.”
Jupiter’s killer had a record of felony charges and had been arrested while running from a bar fight three days before stabbing her. Why hadn’t he been in jail?
Tefft told Paulsen the state didn’t care enough about White people — that if Jupiter had been Black and Kollie had been White, people would have rioted. He said Jupiter was a victim of anti-White discrimination and that her murder should be considered a hate crime. It didn’t matter that Jupiter’s mother is Hispanic, another group demonized by Great Replacement rhetoric.
The remarks echoed what Tefft has said publicly. On one far-right podcast, he accused Fargo leaders of creating an “atmosphere of anti-White hatred.” He called himself a “pro-White advocate,” a euphemism white supremacists have used to reframe their movement’s violent history. He referred to Paulsen as a “family friend,” which Paulsen said wasn’t true.
Yet one of Tefft’s views stuck with Paulsen.
“I don’t want it to be a Black and White thing, but what I agree with is: If the roles were reversed, it would be a different story,” Paulsen said. “There would be riots. People would be burning stuff down.”
After an April court hearing, Paulsen told reporters he’d accepted the help of “pro-White advocates” to lodge an” anti-White hate crime” report against Kollie.
“In all honesty, for the longest time, the only people who were persistent was Peter and his group,” Paulsen said. “I was like, okay, you guys go ahead and speak.”
Tefft had drafted the language for the report, Paulsen said, and recorded a video of them dropping it off together at the Fargo police department. (Paulsen said he has not heard back from an officer, and Fargo police said Kollie has not been charged with a hate crime.)
Jupiter’s killer was ultimately found guilty of murder, robbery and aggravated assault. A judge sentenced him last month to life in prison without parole, the maximum penalty in North Dakota.
Paulsen said he deleted the encrypted app in September and lost touch with Tefft. Before Kollie’s sentencing, though, Saye had invited him to pray together at a Liberian church. Paulsen would have gone, he said, but he had to babysit.
“I have no problem with the Liberians,” he said. “I have hatred toward only one person.”
The cookout
They called Teta’s garage “the Noisy Grill.”
“Because we make a lot of noise!” Saye said as everyone dug into a steaming platter of chicken skewers. Beside him, Behyee grinned. The group had gotten noise violation tickets one evening last summer.
They couldn’t be so carefree now.
“Even tonight, in this part of town, with a lot of police around,” Behyee said, “you have to be afraid.”
That’s why Teta — 41-year-old Teta Roberts — kept her garage door shut. The home health aide in a blue apron had spent three years in a Ghana refugee camp after fleeing conflict in Liberia. As a girl, she saw a rebel soldier slit a man’s throat with a machete. These days, she worries about her kids going to elementary school in North Dakota. Were they safe?
“I pray nothing happens,” Teta said, flipping ribs on the grill.
Twenty friends crowded around her plastic table, enjoying the meat she bought at Sam’s Club and the Miller Lites in her cooler. They tossed dollar bills on a paper plate marked: Tips, plz. Risky or not, the cookouts provided a support group after the “Great Replacement” postcards.
“Don’t worry,” said Christian Sampson, 54. “A few cowards came up with that leaflet.”
Sampson fled the first civil war by bus to Ivory Coast, where he joined a security firm and ended up a bodyguard for U.S. diplomats. Now he worked in customer service at American Airlines and offered protection in his spare time. During the 2020 George Floyd protests in Fargo, when vandals disrupted an otherwise peaceful demonstration, he stood watch outside of Liberian restaurants.
“There’s no intimidation here,” he said. “A few of us can handle this.”
Behyee hoped that was true. He’d just finished an 8-hour shift cooking lemon pepper tilapia for hospital patients. His pulse had quickened walking out to his car.
“Coming from a war-torn country,” he said, “we take every little threat seriously.”
During the fighting, his family hunkered down in their northeastern village. When he was nine, rebels caught him in an ambush and shot him in the foot. When he was 18, they stole his livestock and shot him in the knee. Both times, they’d left him to bleed.
Haunted by the memories, Behyee had applied for a U.S. Diversity Visa Lottery every year until he won in 2012. Adapting to life abroad wouldn’t be so hard, he’d imagined. Freed enslaved people had founded Liberia in 1822. The capital, Monrovia, was named after President James Monroe. Liberia’s red stop signs and yellow school buses look just like the ones in Fargo.
North Dakota would be colder, sure, so he bought a North Face jacket. Nothing had prepared him for the racist fliers. Now Behyee feared conflict could erupt. The warning signs were there, and they felt familiar. The rebels, too, had divided people with propaganda.
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A worker cuts sugarcane near Escuintla, El Salvador, in March 2022. (photo: Kitra Cahana/Undark)
But he was running out of time. The fluid buildup in his abdomen had grown so severe he felt like he was choking. He couldn’t stand, eat, or sleep. His legs had gone completely numb, and he felt phantom ants crawling across his palms. He had lost nearly half his body weight, and sharp knobs of bone poked through his skin like tentpoles. The primary indicator of kidney function, creatinine levels, are considered high when they reach 2 milligrams per deciliter of blood. By 6 mg/dL, they indicate severe, life-threatening kidney disease. Lopez’s were at 35.
Doctors had delivered a stark ultimatum: Begin dialysis or die. But Lopez had seen dialysis firsthand. He was the eighth man in his family to develop chronic kidney disease of unknown origin, or CKDu, a beguiling and fatal illness that was decimating entire communities across Central America and other warm, agricultural locales around the globe. Just in the last three years the disease had claimed his beloved father, Vitelio, and two uncles. The only adult Lopez men who remained were José and his two younger brothers, each of whom had the disease and were inching toward similar fates. Many of José’s relatives had spent their last months receiving dialysis treatments before eventually succumbing—José understood that the catheter was the end of the line.
Nevertheless, his then-4-year-old son, José-Vitelio, finally broke through to him. The whole family—his mother, María Luisa; his wife, Marta; his then-13-year-old son, Edwin—had gathered at his bedside and were begging him to reconsider when, Lopez recalled, the child piped up: “We don’t want to be left alone,” he said. The tiny plea nudged Lopez to seek help. The family called a car, and Lopez was driven to the San Juan de Dios National Hospital in nearby San Miguel. The catheter was installed under local anesthetic, and several days later Lopez enrolled in the Jiquilisco municipality at-home peritoneal dialysis program.
“Here I am, still fighting,” he said, seven months after the procedure.
Since the 1990s, tens of thousands of people across Central America, Sri Lanka, India, and elsewhere have been killed by CKDu, in a ballooning epidemic that has baffled researchers, overwhelmed health care systems, and wiped out entire families. Agricultural communities seem particularly vulnerable, but the disease has surfaced among other workers, too. The precise number of deaths is unknown, but in locales where the disease is endemic, such as the Bajo Lempa region of El Salvador, experts estimate that up to one quarter of the male population has CKDu. (It affects men at roughly two times the rate of women, according to the International Society of Nephrology.) It cannot be cured, only treated with dialysis, and in rural communities such as Tierra Blanca, it is rare for dialysis patients to survive more than a few years. But despite its devastating toll, scientists have struggled to determine what causes the disease or how it develops.
Two competing hypotheses have emerged to explain the epidemic. The first suggests that the main cause is an unknown toxic agent—pesticides, perhaps, or heavy metals or silica. The second points to heat stress and dehydration, amplified by brutal working conditions and an increasingly warmer climate. Many researchers have accepted the possibility that the disease may emerge from the synergistic effect of two or more causes working in tandem. Yet the debate over the primary driver of the epidemic—toxins or heat stress—remains unresolved.
The lingering scientific uncertainty holds profound implications for policy, prevention, and treatment. Without a clear scientific consensus, governments, nongovernmental organizations, and doctors are divided over how to best coordinate a response to the epidemic, a gridlock that has sometimes flared into outright hostility: At least two individuals involved in CKDu research and policy claim to have received death threats and violent attacks because of their positions. In recent years, however, studies from both sides of the debate have offered intriguing new clues, giving scientists renewed hope that someday the scientific stalemate may be broken, and the mystery of this deadly disease finally unlocked.
Until then, the only weapon CKDu patients like José Lopez have against the disease is dialysis. Of the two varieties of the treatment—hemodialysis, which requires an expensive machine to remove toxins from the blood, and peritoneal dialysis, in which the patient’s abdomen is flooded with a solution that leaches toxins from the abdomen’s blood vessels—Lopez can only access the latter. The treatments are relatively inexpensive and can be performed at home, but it must be done four times a day. His son Edwin administers the treatments. Lopez wants Edwin to see the disease close-up, as he had with his own father. He hopes it will encourage the boy to study hard in school, so that he might avoid the brutal agricultural labor that Lopez believes is responsible, in one way or another, for his illness.
“You have an example, right in front of your eyes,” Lopez often tells his son. “Look at what has become of me. This is how the fields left me.”
Tierra Blanca, a small agricultural community of several thousand, is nestled within the verdant coastal lowlands of El Salvador’s Bajo Lempa region. Nearby, a few squat volcanoes rise above the haze of burning sugarcane fields, and to the south the seafood-rich estuaries of the Bay of Jiquilisco give way to the open Pacific Ocean. West of town, the Lempa river braids listlessly through endless tracts of farmland, depositing the mineral-rich silt that makes this region one of the most fertile in the country.
Lopez began cultivating the land around Tierra Blanca when he was 12 years old. His father, Vitelio, and grandfather, Juan-Francisco, would load the boy into an ox cart before sunrise and go clattering down the rocky trail that led into the fields, where roads had not yet been laid. They rented a small subsistence plot from some landowners in San Marcos, and there Lopez learned how to farm—how to drive the oxen and mix an organic pesticide, measure seed depth with his thumb, and trench canals to drain the monsoon rain. Although Lopez was a good student, school supplies were expensive, and he dropped out in the seventh grade.
Back then, in the late 1990s, kidney disease had not yet been widely identified as a killer of El Salvador’s working men and women. The country had just emerged from a brutal 12-year civil war that had claimed the lives of 75,000 people, mostly civilians. In the Bajo Lempa, the health care system—insofar as it existed at all—was privatized and costly. A common saying in the region at the time went, “you pay or you die,” and most of the men Lopez worked with in the fields simply could not afford to pay. When they died, very few people ever questioned why.
That began to change in the late 1990s, when Julio Miranda, a local community organizer and health care activist, started asking questions about the excessive number of funerals that were taking place in Tierra Blanca. “People were dying one after another,” Miranda recalled. “And without any sort of diagnosis.” But Jesus Dominguez, a Spanish doctor who had come to El Salvador to render medical care during the civil war and who worked closely with Miranda, started to recognize the shared symptoms of the deceased. “It was clear,” he said, speaking over Zoom from France, where he currently lives. “They were dying from kidney failure.”
In the early 2000s, Miranda, Dominguez, and a handful of other activists began collecting urine samples from field workers over the age of 30, looking for the elevated protein levels that often signaled kidney disease. Individuals with worrisome levels were instructed to go to a lab for blood work. Dominguez still vividly recalls the night the first batch of test results came back from the lab. The team stayed up all night in Miranda’s living room, poring over the results, checking them again and again. Finally, in the morning, Dominguez recalled turning to Miranda. “This is a massacre,” he said.
“We had the death sentences of hundreds of people in our hands,” Dominguez said in a recent interview, later adding: “I was in shock.”
As the scope of the emerging epidemic began to dawn on the activists, Miranda immediately set about establishing a registry of everyone in the area who was showing signs of kidney disease. The data, he hoped, might galvanize the health ministry into investigating the situation. This registry—which included as much medical information as possible about each patient—was new.
But in a separate notebook, Miranda had already begun to list the dead.
One morning in June 2005, José Lopez entered the bedroom of his grandfather, Juan-Francisco, to rouse the older man for work. Although Juan-Francisco had seemed perfectly healthy just the day before, Lopez now found him gravely ill. He was too weak to stand, and after several failed attempts to get out of bed, he simply hung his head and began to cry. “The man upstairs is calling me,” Lopez recalled his grandfather saying.
Juan-Francisco died three weeks later. The family paid for a modest funeral service that included chicken tamales and black coffee, and a hearse to lead the funeral procession to the Tierra Blanca cemetery. While mourners sang religious hymns, the body of Juan-Francisco was interred in an unadorned cement tomb with ample space surrounding it—the family plot was sparsely populated then. He was the first Lopez man to die of CKDu, and the first from their family to be added to Julio Miranda’s list of the dead: number 62.
The campus of Rosales National Hospital, the centerpiece of El Salvador’s public health care system, sprawls across several city blocks in the heart of the nation’s capital, San Salvador. Throngs of patients, staff, and students jostle between the tall, hangar-like buildings, while shotgun-toting security guards stand at each of the hospital’s entrances. Rosales was built in the late 19th century with money from a public lottery, and a spirit of chance still lingers: Patients complain of erratic care and long waits, doctors of chronic underfunding and insufficient personnel. And nowhere on the campus is more teeming with fringed nerves than the kidney ward, which according to the head of nephrology, accounts for some 60 percent of the hospital’s admissions.
If Rosales is chaotic now, it was far worse in 1995, when Ramón García-Trabanino arrived as a seventh-year medical student, ready to begin his hospital internship. Back then, there was no dedicated nephrology ward, only an internal medicine wing that housed a few old hemodialysis machines. When he started at Rosales, the young doctor supposed he would be treating the full range of conditions he had studied in school—strokes, neurological disorders, pneumonia. Instead, the unit was flooded with kidney patients, wave after wave of them, many on the brink of death.
“The amount of patients was just overwhelming,” recalled García-Trabanino, who now, at 51, directs a private dialysis clinic in San Salvador. “It was like an erupting volcano.” In medical school, García-Trabanino had learned the textbook profile of a kidney disease patient: old, diabetic, hypertensive, equally male and female. He quickly noticed that the influx of sick people arriving at Rosales did not conform to that profile at all.“They weren’t diabetic. They didn’t have high blood pressure,” said García-Trabanino. “They were in their 20s, 30s, 40s—they were young. They attended once, twice, and then they died.”
The patients were treated with an antiquated technique called rigid-catheter peritoneal dialysis. A stiff tube was inserted into their abdomens and their peritoneal cavities flooded with a toxin-absorbing fluid, a process that, to be effective, should have been performed daily. Because of the overwhelming demand, patients at Rosales only received one treatment per week, and each time they returned a new catheter would have to be installed. This alone was dangerous—if doctors accidentally nicked the patient’s bowels or liver during the process they could die, and frequently they did. García-Trabanino, who says he still has nightmares from this time, vividly remembers the first patient he lost. His name was Ramón, just like him.
Perhaps most frustrating of all for the young doctor was that nobody could explain what was happening. Even Ricardo Leiva, the chief nephrologist, was dumbfounded. “We kept asking ourselves, ‘Where are they coming from?’ ” recalled Leiva. “It was overwhelming the hospital. So that’s why we did the first research.”
In the fall of 1999, García-Trabanino, Leiva, and a few others began to investigate. They conducted interviews with 202 patients, collecting demographic, occupational, geographical, and clinical data. They found that only one-third of the interviewees had known risk factors for kidney disease such as diabetes or hypertension. The rest had “unusual characteristics that were not associated with the known risk factors,” according to the resulting study. Of this latter group, the majority were men, worked in agriculture, and had been exposed to pesticides. They also came from hot coastal areas like the Bajo Lempa region, where Tierra Blanca is located.
Published in 2002, the study concluded that a novel group of end-stage kidney patients had been identified, who seemed to “lack a cause for their disease.” The researchers suspected a relationship with occupational exposure to agrochemicals, but stated that further research was needed. It was the first description of the emerging epidemic in the scientific literature, and for his efforts, García-Trabanino was awarded the National Medical Investigation Prize, the country’s top honor for medical research.
In the years preceding the disease’s identification, pesticide use had been on the rise in Central America. According to the Pan American Health Organization, which serves as the World Health Organization affiliate for the Americas, by the end of the 20th century, the region had the highest per-capita use of pesticides of anywhere in the world. Between 1994 and 2000, imports of pesticides to Central America rose by 32 percent. The average agricultural worker in Central America in 1992 used 9.9 pounds of pesticides per year. By 2000, that number had risen to 14.8 pounds. The most commonly sold pesticide in El Salvador, paraquat, has been banned by dozens of countries because of its acute toxicity to the lungs, liver, and kidneys. And although a link has not been conclusively established between paraquat and CKDu, it remains one of the prime suspects the toxic-exposure researchers are investigating.
Nevertheless, the pesticide hypothesis encountered an early stumbling block. In 2005, García-Trabanino’s team published a study that compared CKDu prevalence in a population of men (mostly agricultural workers) in the Bajo Lempa, which is near sea level, with men in Sesori, which is farther north and higher in altitude. The findings perplexed the researchers. Although the two populations cultivated the same crops, using the same pesticides, the men at sea level were eight times more likely to have CKDu. It was a serious blow to their initial hypothesis. “It was not related, at least not to pesticides,” said García-Trabanino. “It was related to the region. So, we had to come up with new ideas.”
Meanwhile, other hotspots were gaining attention. In neighboring Nicaragua, Catharina Wesseling, an epidemiologist who then directed an occupational health and safety initiative called the Program on Work and Health in Central America, began hearing reports of a fatal kidney disease impacting workers at a sugar mill near the town of Chichigalpa. In Sri Lanka, doctors in Anuradhapura District, in the North Central Province, were beginning to notice an alarming uptick in kidney patients arriving at their hospitals. In the state of Andhra Pradesh in India, and in the El-Minia Governorate in Egypt, similarly worrisome trends were coming into focus. Locales where the disease appeared endemic generally shared two conspicuous features: They were heavily agricultural, and they were hot.
The government in El Salvador, despite having awarded García-Trabanino the National Medical Investigation Prize in 2000, had largely ignored the epidemic in the decade following its emergence. That began to change, however, when in 2009 the country elected its first leftist president, the Farabundo Martí Liberation Front candidate, Mauricio Funes, putting an end to decades of conservative rule. Among the new president’s priorities was a reboot of El Salvador’s public health care system, which had atrophied under years of neoliberal policies designed to encourage privatization. To oversee the reforms, Funes appointed a new health minister, María Isabel Rodríguez, a doctor who had worked for PAHO and was keenly aware of the unfolding health crisis. Under Rodríguez’s leadership, a young nephrologist named Carlos Orantes began to spearhead the first official government investigation into the illness.
In fall 2009, Orantes and his team conducted the largest CKDu study undertaken up to that date, surveying 775 individuals in the Bajo Lempa region in order to better understand the disease’s prevalence and associated risk factors. Many of Orantes’ findings—such as the conspicuous absence of traditional risk factors, the higher burden among men than women, and the preponderance of the disease in agricultural communities—dovetailed closely with those of García-Trabanino and others from previous years. Unlike García-Trabanino and Wesseling, however, who by then had begun exploring other possible causes, Orantes determined that toxins, especially pesticides, deserved renewed scrutiny. Of the men that responded to his survey, 82.5 percent reported contact with agrochemicals, the highest percentage of any potential risk factor screened for by the study. The report noted that field researchers involved in gathering data had observed dangerous agrochemical handling practices and had become aware of a long history of indiscriminate aerial crop dusting in the Bajo Lempa region. The study concluded that certain risk factors “may act synergistically” and that although the specific etiology remained elusive, the hypothesis of an environmental toxin “cannot be ruled out.”
The study, with its renewed suspicions of a toxin-based etiology, formed the basis of the new health minister’s stance on CKDu. “The evidence suggests agrochemicals and pesticides as possible associated factors and this has to be investigated,” said Rodríguez in a 2013 interview with MEDICC Review, a Latin American health journal. Press coverage of the issue around this time tended to follow the government’s lead, suggesting in article after article that there was a potential link between pesticides and the epidemic. During this time, researchers like García-Trabanino and Wesseling say they began to worry the public was being served a convenient narrative, one that provided an easy answer—but wasn’t supported by the science.
In April 2013, El Salvador hosted a meeting of the Council of Ministers of Health of Central America and the Dominican Republic, which culminated in the signing of the Declaration of San Salvador, which recognized CKDu as “a major public health problem” and signaled a willingness to tackle the epidemic on a regional level. Before the document was signed, however, a vigorous debate broke out among the attendees over whether the role of pesticides was being overstated. According to an account of the meeting by the Center for Public Integrity, representatives of El Salvador’s ministry of health asserted that the most compelling data suggested a high association between CKDu and agrochemical exposure, while other researchers, including García-Trabanino, argued that a definitive link had never been established in the scientific literature. Rodríguez put an end to the debate by declaring, “What has been presented here is scientific fact, and I will defend it with my nails!” She showed the crowd a set of brightly painted red nails, the room erupted with laughter, and the document was signed.
But the debate over the role of pesticides did not end there. In summer 2013, Rodríguez and Salvador Menendez, the mayor of a municipality called San Luis Talpa that had been devastated by the epidemic, launched a campaign to prohibit the use of 53 agrochemicals that were suspected of being deleterious to workers’ health. The proposal ignited a fierce public discourse, whose fault lines hewed closely to what had been argued by each side in the Council of Ministers meeting. But as the scientific debate entered the public realm—through press coverage and word of mouth—the conversation quickly soured, before finally exploding into outright acrimony and accusation.
The mudslinging went in all directions: García-Trabanino accused the health ministry of distorting science in order to score a tidy political victory. The powerful agricultural sector, according to a newspaper article at the time, made sensational claims that El Salvador’s agricultural output would plummet by 80 percent if the ban went through. Orantes says he was maligned as an “eco-fanatic” who was “obsessed with agrochemicals.” In turn, García-Trabanino says he was publicly disparaged as being a shill for the agricultural sector (he insists he never took money from agricultural groups) and was so widely vilified that Julio Miranda had to warn him against returning to Tierra Blanca, where he had been conducting research. The fieldworkers whose health had been the focus of his career were now a threat to his safety. García-Trabanino says he received a death threat during this time. For Mayor Menendez it was even worse: He claims that on three separate occasions, the armored car he was riding in was fired upon by unknown assailants. Each time, he notes, he escaped without injury.
On Sept. 5, 2013, El Salvador’s legislative assembly voted to approve the agrochemical ban. But in a move that surprised many, President Funes himself declined to sign the prohibition into law, instead returning it to the legislative assembly, where it entered a state of legal limbo, neither vetoed nor approved. (In 2016, Funes was embroiled in a corruption scandal that prompted him to flee to Nicaragua, where he was granted asylum. He maintains that he is the victim of political persecution.) The degeneration of the public debate and the failure of the agrochemical ban to become law marked the end of what many had hoped would be a high-water mark for CKDu research and action. After that, in 2014, a new administration took power, and Rodríguez, who was over 90 years old, retired from her role as health minister. Orantes’ investigative unit was dissolved, and he was reassigned to a different department. An effort to revive the agrochemical ban foundered, a national action plan that Orantes had developed was cast aside, and the stipulations of the Declaration of San Salvador—which many believed had offered the brightest hope for regional action to combat the epidemic—went largely ignored. It was a “regression that left us in an even worse state than when we started,” recalled Orantes.
When his grandfather died of kidney failure in 2005, José Lopez, like most people in Tierra Blanca, had never heard of CKDu. But in the years that followed, insuficiencia renal, as it became known, grew into a dominant feature of life in the Bajo Lempa. Billboards sprung up along the highway connecting the region to San Salvador, advertising private dialysis clinics that few could afford. Local funeral homes began catering almost exclusively to victims of CKDu. (“It’s very rare for someone to die from a different disease,” one mortician said in an interview with Undark.) Nearly everyone was touched, directly or indirectly, by the epidemic. Many field laborers were diagnosed but continued working—compelled to by the grinding poverty endemic to the region. Doctors often dispensed paradoxical advice: Reduce work hours and purchase costly medication.
By the 2010s, the disease was ravaging the Lopez family. One of Lopez’s uncles had succumbed in 2009 and now rested beside Juan-Francisco in the Tierra Blanca cemetery. Two more uncles were sick, as was Lopez’s father, Vitelio. Worst of all, though, was that both of Lopez’s younger brothers had developed the disease—Francisco at the age of 10.
Up to that point, however, Lopez himself had managed to avoid the fate of the other men. His kidneys remained healthy, and he had fallen easily into his role as the family’s main breadwinner. Back in 2008, he had married his wife, Marta, and shortly afterward they had Edwin. Lopez continued to work the fields, and sometimes his ailing father would visit him there, nostalgic for the years they had labored together. The two men would sit together and admire the crops, breathing in the sweet earthy scent of the sprouting sugarcane. “This produce is beautiful,” Lopez recalled his father saying. “Perhaps it’s even better than when I grew it.”
But Lopez’s luck eventually ran out. In 2015, blood tests revealed that his creatinine levels were slightly elevated. He showed no symptoms, but doctors nevertheless prescribed medication and told him to reduce his work hours. He tried to follow their orders, but his family’s diminishing resources soon made it impossible. Within months, he was back in the fields, working full time.
Lopez’s father passed away on April 13, 2019. As with the previous deaths, the family held a two-day vigil and a service with chicken tamales and black coffee. There were religious hymns and a solemn procession to the graveyard. Then Vitelio was laid to rest in the family plot beside his father and brother.
For Lopez’s mother, María Luisa, the hardest part of losing her husband was the sense that his death foreshadowed the fate of her boys, all of whom now had CKDu. “There is going to come a day where my kids are going to go,” she said one afternoon. “It’s a lie to say that they are going to get cured.”
Nobody was ever cured. Shortly after Vitelio’s death, both of Lopez’s remaining uncles followed. There were more tamales and coffee and religious songs. In just over two years the Lopez family plot filled with three fresh graves. And elsewhere in the cemetery, other fresh graves were appearing, too. All across the region, hundreds of families were suffering the same fate.
As the debate over agrochemicals was ramping up in El Salvador in the early 2010s, a competing hypothesis was simultaneously gaining traction within CKDu research circles. Championed by toxic-exposure skeptics like Wesseling, the epidemiologist from the Program on Work and Health in Central America, the theory proposed that heat stress and dehydration, not toxins, were the primary drivers of the CKDu epidemic. The heat stress hypothesis has since garnered widespread support, emerging as the chief competitor to the toxic-exposure theory.
A substantial body of research supports the heat stress hypothesis. In 2012, Wesseling and Sandra Peraza, a chemist at the University of El Salvador, published a study that compared creatinine levels in various communities across the country. Two of the communities cultivated sugarcane as their main economic activity, although one was at sea level while the other was higher in elevation and significantly cooler. The findings echoed the 2005 analysis spearheaded by García-Trabanino, the nephrologist who had first identified the epidemic in the late ’90s: Despite employing similar agricultural practices—including the use of pesticides—the high-elevation community only had a 3.6 percent rate of elevated creatinine levels among men. On the rural coast, however, the rate was 28.3 percent. “The major difference,” the team wrote, “seems to be ambient temperature in combination with strenuous work.”
In 2014, García-Trabanino, Wesseling, and a handful of other researchers conducted a study that further bolstered the heat stress hypothesis. The team tested biomarkers of renal function, such as creatinine and uric acid, in sugarcane workers both before and after a day’s shift in the fields. Just one shift, the team found, was enough to substantially increase the prevalence of heightened creatinine levels among the participants, from 20 percent to 25 percent. Similarly, the prevalence of elevated uric acid rose from 26 percent to 43 percent over the course of a shift. Furthermore, the researchers found an association between heat and creatinine levels, observing a 2 percent increase in creatinine for every one degree increase in temperature. The study provided some of the first detailed data linking heat stress to decreased renal function and stated in its conclusion that “work practices must be improved with more frequent breaks, access to shade during breaks, larger intake of water, and probably also salt.”
Based on findings such as these, La Isla Network, or LIN, a nongovernmental organization that focuses on CKDu research and advocacy, began designing and implementing intervention studies in 2015 at El Ángel sugar mill in El Salvador. By introducing a simple program they called “water, rest, and shade” (provision of clean drinking water and electrolyte powder, enforcement of frequent and mandatory work breaks, and the offering of a mobile shade structure) the LIN researchers hoped to do two things: confirm that certain elements of the heat stress theory were correct and determine whether the interventions could reduce workers’ risk.
In 2018, the LIN team, which had by then hired Wesseling as chief epidemiologist, published its results in the Scandinavian Journal of Work, Environment, and Health, a highly cited international occupational health journal. The paper observed two groups of workers, one on the coast and one farther inland. A measurement of kidney function based on creatinine levels was calculated for each worker at the beginning of the harvest, as well as just before the interventions began and again at the end of the season. The interventions, which were implemented two months into the five-month cane cutting season, were shown to slow the rate of kidney decline over the course of the harvest. Amongst the inland group, kidney decline leveled out completely following the intervention. Although the sample size was small, owing to logistical difficulties, with just 40 people in the coastal group and 40 in the inland group, the researchers were encouraged by what they claimed was the first objective dataset demonstrating the efficacy of LIN’s occupational interventions.
“In El Salvador, we got the first evidence that heat stress as such can produce incident kidney injury during the harvest,” said Wesseling, talking over Zoom from her home in Costa Rica. Subsequent studies at Ingenio San Antonio, a large sugar mill in Nicaragua, have provided further evidence that the interventions are effective—and that the heat stress hypothesis is strong.
Although Wesseling doesn’t discount the possibility of other contributing factors, such as toxins, she nevertheless believes that heat stress and dehydration alone are sufficient to explain the epidemic. She and her colleagues at La Isla Network have even developed a hypothesis for a heat-related pathogenesis of CKDu, describing in a 2020 paper how “the release of pro-inflammatory substances from a leaky gut and/or injured muscle” could induce kidney inflammation, which is associated with kidney injury.
Other researchers aren’t so convinced. Despite widespread acceptance that heat stress may play a role in the disease’s advancement, Marc E. De Broe, the former head of the department of nephrology at the University of Antwerp in Belgium, and Channa Jayasumana, the former health minister of Sri Lanka, believe that something else must be causing the disease to take root in the first place. How could heat alone, they argue, explain the sudden emergence of CKDu in the 1990s, when temperatures in Central America and Sri Lanka were relatively stable over the 20th century? Or the patchwork distribution of CKDu-endemic areas in Sri Lanka, despite a fairly uniform climate and similar work practices? Or the existence of kidney-injury biomarkers in Central American adolescents who had never worked? Wesseling argues against many of these points on the basis of insufficient or flawed research, yet many researchers remain unconvinced that heat alone can explain the totality of the epidemic’s features. As García-Trabanino put it: “Heat stress seems to be the trigger. But the bullet is already loaded.”
A recent study from Sri Lanka seemed to confirm the doubts of many heat stress skeptics. A team from the University of Ruhana compared three occupational groups—rice paddy farmers, tea-plantation workers, and fishers—who labored under varying levels of heat exposure. The team found that the group that worked the longest hours in the hottest weather, fishers, demonstrated the lowest CKDu burden, at 5.36 percent. Meanwhile, paddy farmers, who labored at comparatively low to moderate temperatures, reported a higher incidence of susceptibility, at 13.33 percent. “Our findings indicate that heat stress and dehydration are unlikely to be the leading drivers of CKDu in Sri Lanka,” the study concluded, adding, “Heat exposure may act synergistically with other risk factors in causation and progression of CKDu.”
The scientific uncertainty has spurred researchers to continue the hunt for García-Trabanino’s elusive “bullet.” Richard Johnson, a nephrologist at the University of Colorado, is investigating the potentially toxic impact of silica, which is released when sugarcane fields are burned before the harvest. Sandra Peraza, an advocate of heat stress as a major driver of CKDu, is nevertheless curious about the role that genetics may play in predisposing certain populations to the illness. In Sri Lanka, however, the majority of research has focused on toxins, and how various toxic substances may interact with each other to produce the disease.
That each of the two major hypotheses—heat stress and toxins—can be so easily associated with a particular geographical hotspot raises a simple but crucially important question: Are researchers in Central America and South Asia even studying the same disease?
Most believe so, but it cannot yet be definitively proven. One shortcoming that has dogged CKDu research over the years is the absence of a universally accepted definition of the disease. CKDu patients are generally diagnosed clinically, when they present with indicators such as elevated creatinine levels or symptoms of chronic kidney disease in the absence of classic risk factors such as diabetes or hypertension. Pathologically, the disease is generally described as tubulointerstitial nephritis, meaning it causes damage to a certain part of the kidney’s filtering units, the tubules, as well as the tissue that surrounds them. But tubulointerstitial nephritis is too common a type of kidney damage to be useful as a diagnostic criterion for CKDu. Still, a 2018 biopsy study led by Julia Wijkström, a Swedish renal pathologist who works closely with LIN, concluded that there were “many similarities in the biochemical and morphological profile of the CKDu endemics in Central America and Sri Lanka, supporting a common etiology.” Wijkström’s team, however, also noted some differences, and suggested that larger biopsy studies were needed.
In an effort to gain a better understanding of the disease’s pathology, a team in 2018 led by Marc E. De Broe (and that included Orantes, the nephrologist who had led El Salvador’s CKDu investigative unit before the pesticide debate of 2013) conducted a kidney biopsy study that resulted in a discovery that intrigued the scientists. The cells of all complex organisms contain tiny garbage collectors called lysosomes, which are responsible for breaking down and eliminating waste from the cell. In the specific kidney cells targeted by CKDu, those lysosomes are supposed to be round or oval-shaped, and of a certain minuscule size. De Broe’s team, however, found that in CKDu patients, the lysosomes of those cells were enlarged and oddly shaped, like amoebas. That type of lysosomal disfigurement was commonly seen in another group of patients—those who had ingested known nephrotoxic medications. The team then conducted a rat study where they were able to recreate the same lysosomal abnormalities by feeding the rats a drug that is toxic to kidneys called cyclosporine. Another group of rats who were not fed cyclosporine—but who were dehydrated—did not develop the misshapen lysosomes. It was enough for the team to conclude that they had found hard evidence that toxins could cause CKDu.
Additionally, within the aberrant lysosomes the team observed mysterious clumps—or aggregates, as the scientists called them—of an unknown substance, visible under electron microscopy. Cynthia Nast, a renal pathologist who worked on the study, said that the aggregates could be a number of things—the remnants of damaged cell proteins, for example, or the breakdown product of a toxic substance. They might also be, however, the toxic substance itself—minuscule accumulations of whatever agent is causing the disease. But Nast cautions against getting ahead of the science. “Can it maybe at some point inform about causality? Maybe. But we don’t know that yet,” she said. In the meantime, Nast remains satisfied that her team’s research has provided the most compelling evidence yet for a toxic etiology. “I am completely a believer that this lesion is a marker of a toxic nephropathy,” she said.
But the study, which was published in the prestigious nephrology journal Kidney International, proved controversial. Wijkström, the Swedish pathologist, and a handful of other researchers published a letter to the editor of the journal that claimed they had found the same aberrant lysosomes in five randomly selected healthy kidney donors. In response to the letter, the authors of the original paper replied that the scientists had misunderstood the diagnostic criteria for the lysosomes, and that the lysosomes they had found were not the same as the ones described in the original paper. Within the CKDu research community, attitudes toward the Kidney International paper seemed to follow the general contour of the wider CKDu debate: The heat stress people, like Wesseling, viewed Wijkström’s letter as a convincing debunking of the lysosomal findings. Meanwhile, the toxic-exposure supporters, such as Nast, viewed the author’s reply to Wijkström and the others as proof that their claims had little merit. To this day, even the editor of Kidney International, Pierre Ronco, remains torn. “The arguments are well balanced, and the question of the cause remains quite open,” he wrote in an email to Undark.
If there’s anyone who can be said to straddle the divide between the heat stress camp and the toxic-exposure camp, it might be Johnson, the University of Colorado nephrologist. Johnson worked closely with LIN and the heat stress advocates in the first part of the decade, but his research has now shifted toward toxins. For Johnson, however, neither side has decisively proven its case. “If you hear anyone who says it has got to be a toxin, or it has got to be heat stress,” he said during a call in July, “you have to realize that they’ve been convinced when we haven’t totally proven it.” Johnson acknowledges the significant contributions of scientists from each side of the debate and says that there simply has to be more research. “The lysosomal changes favor a toxin, but there’s a lot that favors heat stress,” he said. “You keep going until you have absolutely definitive evidence.”
And so, the researchers keep going. La Isla Network plans to expand its occupational interventions to more workers through an initiative called Prevention, Resilience, Efficiency, and Protection, or PREP 4 Change. The Belgian team that first identified the strange lysosomes is conducting further research to buttress their claims. And perhaps most significantly, in 2020 the U.S. National Institutes of Health announced a $4 million grant for the future study of CKDu. The project, called the CURE consortium, will be by far the largest effort yet to understand the disease, and researchers from both sides of the debate are hopeful for what it may discover. “This one is getting big and really interesting,” said García-Trabanino. “We hope to finally untangle the mystery and stop the massacre.”
Just beyond the western edge of town, tucked serenely within a dense grove of mango, cashew, and guanacaste trees, lies the Tierra Blanca cemetery. Its brightly painted tombs suit the wild tangle of the encroaching flora, like enormous tropical flowers. Overhead, the canopy teems with squawking songbirds, but otherwise the cemetery is still. A two-track road weaves delicately through the headstones, just wide enough for a car to pass, and near the far southern edge, beneath the spindly bough of a Morro tree, is the Lopez family plot with its six modest graves.
On a bright afternoon in late March, Lopez’s son, Edwin, and mother, María Luisa, headed to the cemetery. The number of graves in the Lopez plot had doubled in the previous three years, and their grief was still raw. When María Luisa reached the light-blue cement tomb of her husband, Vitelio, she fell silent, her eyes welling with tears. “All I remember is the sadness,” she said, recalling the day the family buried Vitelio. She scanned the six graves with a look of disbelief. “It’s not easy knowing that your entire family died from the same disease,” she said. “It’s like a chain that’s tied to them.”
Edwin kneeled beside his grandfather’s grave and began to sweep it clean with a fallen tree branch. The deaths of his family members have left him feeling abandoned, he explained. Those who remain are forced to struggle forward with whatever resources are left, and must grow up and live without parents, or uncles, or grandparents. “Almost all of them are dead,” he said. But for him, the worst has not yet happened. “What I’m really scared of is one day losing my father.”
Lopez, who was far too ill to accompany the others to the cemetery that afternoon, shares his son’s fear. “I am scared, I will tell you that,” he said, speaking of the prospect of leaving his family behind. To temper the worry, Lopez has again turned to his faith. But he no longer asks for miracles. Now, his prayers are only for his family. “I just ask God that whenever the day comes, he gives them strength. He gives them strength to persevere.”
For those left behind, however, perseverance is more than a matter of faith. Edwin tries to channel his fear and sadness into motivation for his studies, because it’s something tangible he can do to resist the deadly march of the disease. As his father often tells him, his education may be the only way to escape their family’s generational cycle of poverty, illness, and death. But it can be hard to concentrate when everything seems so precarious. Francisco, Edwin’s uncle, may soon begin dialysis too, and with each of the family’s income-earners falling ill, Edwin’s chances of avoiding the fields grows slimmer. And regardless of the physiological cause of CKDu, he understands the implications of fieldwork here, in this place. “Agriculture kills you,” he said. “That’s where the kidney disease comes from.”
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Houston. (photo: Getty Images)
Houston officials issued the advisory Monday morning after the outage Sunday caused water pressure at the East Water Purification Plant to drop below the minimum allowed by the Texas Commission on Environmental Quality (TCEQ).
Under Texas law, a citywide boil-water advisory cannot end until 24 hours after the TCEQ says the samples are at acceptable levels. Mayor Sylvester Turner’s office said in a statement that the earliest the city could receive an all-clear is Monday night or the early hours of Tuesday morning.
Turner (D) denied there was any hazard of contamination on Twitter, telling NBC News’s Mike Hixenbaugh “When the water pressure falls before 20 [pounds per square inch] generally there is a regulatory requirement to issue a boil water notice even if we believe the water is safe to drink. It remains in place until water samples are tested.”
Texas’s largest city found itself in a similar situation last February, when the state’s self-contained power grid failed during extreme winter weather. Houston issued another boil-water advisory in response to that crisis, which also led to widespread freezing of pipes.
At the other extreme, heat and drought conditions also contributed to issues with the water supply this summer, when the city’s department of public works fielded four times the typical number of water leak reports. The city blamed Houston’s clay-derived soil, which becomes brittle in dry conditions and can increase shifts in the ground, causing pipes to crack or disconnect.
Meanwhile, Austin saw a boil-water advisory this February after officials in the state’s capital warned of unspecified “errors” at a treatment facility.
In 2021, the city reached a consent decree with the Environmental Protection Agency requiring the city to upgrade its sewage pipes to the tune of $2 billion.
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