This article is part of TPM Cafe, TPM’s home for opinion and news analysis. It first appeared at The Conversation.
E. O. Wilson was an extraordinary scholar in every sense of the word. Back in the 1980s, Milton Stetson, the chair of the biology department at the University of Delaware, told me that a scientist who makes a single seminal contribution to his or her field has been a success. By the time I met Edward O. Wilson in 1982, he had already made at least five such contributions to science.
Each of his seminal contributions fundamentally changed the way scientists approached these disciplines, and explained why E.O. – as he was fondly known – was an academic god for many young scientists like me. This astonishing record of achievement may have been due to his phenomenal ability to piece together new ideas using information garnered from disparate fields of study.
Big insights from small subjects
In 1982 I cautiously sat down next to the great man during a break at a small conference on social insects. He turned, extended his hand and said, “Hi, I’m Ed Wilson. I don’t believe we’ve met.” Then we talked until it was time to get back to business.
Three hours later I approached him again, this time without trepidation because surely now we were the best of friends. He turned, extended his hand, and said “Hi, I’m Ed Wilson. I don’t believe we’ve met.”
Wilson forgetting me, but remaining kind and interested anyway, showed that beneath his many layers of brilliance was a real person and a compassionate one. I was fresh out of graduate school, and doubt that another person at that conference knew less than I — something I’m sure Wilson discovered as soon as I opened my mouth. Yet he didn’t hesitate to extend himself to me, not once but twice.
Thirty-two years later, in 2014, we met again. I had been invited to speak in a ceremony honoring his receipt of the Franklin Institute’s Benjamin Franklin Medal for Earth and Environmental Science. The award honored Wilson’s lifetime achievements in science, but particularly his many efforts to save life on Earth.
My work studying native plants and insects, and how crucial they are to food webs, was inspired by Wilson’s eloquent descriptions of biodiversity and how the myriad interactions among species create the conditions that enable the very existence of such species.
I spent the first decades of my career studying the evolution of insect parental care, and Wilson’s early writings provided a number of testable hypotheses that guided that research. But his 1992 book, “The Diversity of Life,” resonated deeply with me and became the basis for an eventual turn in my career path.
Though I am an entomologist, I did not realize that insects were “the little things that run the world” until Wilson explained why this is so in 1987. Like nearly all scientists and nonscientists alike, my understanding of how biodiversity sustains humans was embarrassingly cursory. Fortunately, Wilson opened our eyes.
Throughout his career Wilson flatly rejected the notion held by many scholars that natural history – the study of the natural world through observation rather than experimentation – was unimportant. He proudly labeled himself a naturalist, and communicated the urgent need to study and preserve the natural world. Decades before it was in vogue, he recognized that our refusal to acknowledge the Earth’s limits, coupled with the unsustainability of perpetual economic growth, had set humans well on their way to ecological oblivion.
Wilson understood that humans’ reckless treatment of the ecosystems that support us was not only a recipe for our own demise. It was forcing the biodiversity he so cherished into the sixth mass extinction in Earth’s history, and the first one caused by an animal: us.
E.O. Wilson long advocated conserving the world’s biodiversity hot spots – zones with high numbers of native species where habitats are most endangered. This image shows deforestation from 1975 to 2013 in one such area, West Africa’s Upper Guinean Forest. USGS
A broad vision for conservation
And so, to his lifelong fascination with ants, E. O. Wilson added a second passion: guiding humanity toward a more sustainable existence. To do that, he knew he had to reach beyond the towers of academia and write for the public, and that one book would not suffice. Learning requires repeated exposure, and that is what Wilson delivered in “The Diversity of Life,” “Biophilia,” “The Future of Life,” “The Creation” and his final plea in 2016, “Half-Earth: Our Planet’s Fight for Life.”
As Wilson aged, desperation and urgency replaced political correctness in his writings. He boldly exposed ecological destruction caused by fundamentalist religions and unrestricted population growth, and challenged the central dogma of conservation biology, demonstrating that conservation could not succeed if restricted to tiny, isolated habitat patches.
In “Half Earth,” he distilled a lifetime of ecological knowledge into one simple tenet: Life as we know it can be sustained only if we preserve functioning ecosystems on at least half of planet Earth.
But is this possible? Nearly half of the planet is used for some form of agriculture, and 7.9 billion people and their vast network of infrastructure occupy the other half.
As I see it, the only way to realize E.O.’s lifelong wish is learn to coexist with nature, in the same place, at the same time. It is essential to bury forever the notion that humans are here and nature is someplace else. Providing a blueprint for this radical cultural transformation has been my goal for the last 20 years, and I am honored that it melds with E.O. Wilson’s dream.
There is no time to waste in this effort. Wilson himself once said, “Conservation is a discipline with a deadline.” Whether humans have the wisdom to meet that deadline remains to be seen.
This story first appeared at ProPublica. ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.
By the time Cheryl Cosey learned she had COVID-19, she had gone three days without dialysis — a day and a half more than she usually waited between appointments. She worried how much longer she could wait before going without her life-saving treatments would kill her.
The 58-year-old Cosey was a dialysis technician for years before she herself was diagnosed with end-stage renal disease. After that, she usually took a medical transport van to a dialysis facility three days a week. There, she sat with other patients for hours in the same kind of cushioned chairs where she’d prepped her own patients, connected to machines that drew out their blood, filtered it for toxins, then pumped it back into their fatigued bodies.
Her COVID-19 diagnosis in the pandemic’s first weeks, after she’d been turned away from a dialysis facility because of a fever, meant Cosey was battling two potentially fatal diseases. But even she didn’t know how dangerous the novel coronavirus was to her weakened immune system.
Had she realized the risks, she would have had her daughter Shardae Lovelady move in. Just the two of them in Cosey’s red brick home on Chicago’s West Side, looking out at the world through the sliding glass door in the living room, leaving only for her dialysis.
After Cosey’s positive test in April 2020, Lovelady had to take her mother to a facility that treated patients with suspected or confirmed COVID-19. The facility fit her in for one of its last appointments the next day.
At that point, Cosey had gone more than four days without dialysis.
Four hours later, after Cosey completed her treatment, Lovelady returned to the nearly deserted building to bring her mother home, the sun having long disappeared from the sky. Cosey, dressed in a sweater and a green spring jacket, was disoriented, her breathing sporadic.
Alone with her mother on the sidewalk, Lovelady ran inside to ask workers for help getting Cosey out of her wheelchair and into her car.
“They offered no assistance,” Lovelady said. “They treated her as though she was an infection.”
(A spokesperson for the facility said employees aren’t allowed to help patients once they leave, for safety reasons.)
As Lovelady waited for paramedics to arrive, she grabbed a blanket from her car to wrap around her mother.
“My mother has COVID. I know she has COVID, but I didn’t care,” Lovelady said. “I hugged her and just held on until the ambulance came.”
Then she followed the flashing lights to the hospital.
In the three decades before the pandemic, the number of Americans with end-stage renal disease had more than quadrupled, from about 180,000 in 1990 to about 810,000 in 2019, according to the United States Renal Data System, a national data registry. About 70% of these patients relied on dialysis in 2019; the other 30% received kidney transplants.
The Midwest stood out as the region with the highest rate of patients with the disease, and Illinois had the nation’s third highest prevalence after Washington, D.C., and South Dakota, according to the Centers for Disease Control and Prevention.
A rare bright spot was the downturn in the death rate. Although diagnoses have been going up, death rates for patients who are on dialysis have declined since the early 2000s.
Then COVID-19 struck. Nearly 18,000 more dialysis patients died in 2020 than would have been expected based on previous years. That staggering toll represents an increase of nearly 20% from 2019, when more than 96,000 patients on dialysis died, according to federal data released this month.
The loss led to an unprecedented outcome: The nation’s dialysis population shrank, the first decline since the U.S. began keeping detailed numbers nearly a half century ago.
They were COVID-19’s perfect victims.
“It can’t help but feel like a massive failure when we have such a catastrophic loss of patients,” said Dr. Michael Heung, a clinical professor of nephrology at the University of Michigan. “It speaks to just how bad this pandemic has been and how bad this disease is.”
Before most patients reach advanced kidney failure, they are diagnosed with diabetes, hypertension or a host of other underlying conditions. Their immune systems are severely compromised, meaning they are essentially powerless to survive the most dangerous infections.
Many are old and poor. They also are disproportionately Black, as was Cosey. A 2017 study called end-stage renal disease “one of the starkest examples of racial/ethnic disparities in health.” Those inequities carried through to the pandemic. Dialysis patients who were Black or Latino, according to federal data, suffered higher rates of COVID-19 by every metric: infection, hospitalization, death.
Their deaths went largely unnoticed.
To get their treatments, the majority of dialysis patients in the U.S. must leave the relative safety of their homes and travel to a facility, often with strangers on public or medical transportation. Once at the dialysis center, they typically gather together in a large room for three to four hours.
The fear of contracting the virus was enough to keep many from venturing out for medical care, including those already on dialysis and those set to get the treatment for the first time. Exactly how long patients can go without dialysis depends on a number of factors, but doctors generally begin to worry if they miss two of their thrice-weekly sessions.
Dr. Kirsten Johansen, director of the United States Renal Data System, said the rates of people starting dialysis had been relatively stable until the pandemic. “Then the floor fell out,” she said in an interview.
COVID-19’s collateral damage played out in other ways as well. It meant that people delayed going to the hospital for everything from heart disease to cancer. For dialysis patients, whose life expectancy in some cases is three decades shorter than the general population, the results were calamitous. Hospitalizations of dialysis patients for reasons unrelated to COVID-19 dropped 33% between late March and April of 2020, federal data shows.
Dr. Delphine Tuot, a nephrologist and associate professor at University of California San Francisco and Zuckerberg San Francisco General Hospital and Trauma Center who focuses on vulnerable populations, found herself pleading with some of her patients to come in for their regular dialysis appointments.
One of them was a 60-year-old man whose shortness of breath landed him in the hospital in February. Doctors scheduled dialysis three times a week, and though he was initially resistant, Tuot said, he came around once he realized he would die without it.
Still, he missed appointments. When Tuot followed up, he told her he was afraid to leave the house because he was caring for his wife who had cancer, and he didn’t want to contract COVID and bring it home to her. Soon a cycle began. He skipped treatments, fluid built up in his body and an ambulance rushed him to the hospital because he couldn’t breathe. He got dialysis, was sent home and got back on track.
When cases surged and the delta variant took hold this summer, the cycle restarted — until he skipped dialysis for three weeks in a row, so long that his heart couldn’t recover, according to Tuot. He died last month.
Despite early efforts to mask and isolate patients at dialysis facilities, one study found the rate of COVID-19 hospitalizations of dialysis patients from March to April 2020 was 40 times higher than the general population.
Even with skyrocketing hospitalizations, it took three months after vaccines were approved before federal officials provided vaccinations to dialysis clinics, despite advocacy groups urging that this high-risk population be prioritized.
Although dialysis centers were swift to implement safety protocols in the pandemic’s early days, some facilities didn’t follow their own infection control policies, including washing hands properly, keeping workers home when sick or disinfecting equipment, federal inspection records show.
And home dialysis, which has been shown to be safer for patients during the pandemic, is out of reach for many, especially Black and Latino patients. Nephrologists had pushed for greater access to home dialysis before the pandemic; that need is more apparent now than ever, Tuot said.
“The fact that individuals had to go to a center with other individuals who are equally immunocompromised and had to get to that center, whether that was by public transportation or by van transportation, it’s clearly additional risks,” Tuot said. “Bottom line, they are very vulnerable. They’re very sick.”
The ambulance took Cosey to Chicago’s Rush University Medical Center. Lovelady filled in the staff on her mother’s medical history of end-stage renal disease, high blood pressure and asthma. The next day, Cosey called her daughter from her hospital bed. Lovelady noticed marked improvement from the night before.
“She sounded like herself,” Lovelady said. “We joked around a little bit. I asked her what kind of medicine she was on. She said they started her on dialysis.”
One by one, Lovelady added her sister, cousin and brother to the call. They told Cosey she had scared them, but now that she was doing better, they teased that they needed her to come home to bake her famous cheesecake. Her grandchildren hadn’t stopped asking about her either. They missed movie nights at Cosey’s house, when she made them popcorn and covered the floor with blankets.
Cosey’s boisterous laugh reassured them.
When Lovelady sensed her mother tiring, she told her she’d call her back the next day.
“Go ahead and get some rest,” she said.
While the arrival of the pandemic rocked the health care system as a whole, the effect on dialysis facilities has received little attention.
The Centers for Medicare & Medicaid Services typically monitor the facilities through routine inspections and surprise visits to investigate specific complaints. But federal officials are two years overdue on more than 5,000 inspections at dialysis facilities across the country, Medicare data shows, and three years behind on more than 3,000 of them. Since the start of 2020, the number of inspections to dialysis facilities by government officials fell by more than 30% from the previous two years, ProPublica found. Complaints made up a larger portion of investigations. In 2019, 35% of total visits were in response to complaints. Last year, it jumped to 51%.
A spokesperson for the Centers for Medicare & Medicaid Services said in a statement that the pandemic forced the agency to temporarily suspend or delay inspections for non-urgent complaints and routine inspections to focus on infection control and critical concerns that placed patients in immediate jeopardy. The agency is working with states, which act on behalf of federal officials, to address the resulting backlog, the spokesperson said, but “nearly all state agencies report insufficient resources to complete the required, ongoing federal workload.”
The spokesperson said “the COVID-19 pandemic has presented a unique challenge unlike any other in history and has impacted our routine oversight work,” adding that “complaint investigations remain our first priority to ensure we address the immediate needs of patients receiving care in dialysis facilities.”
Insufficient funding has compounded those challenges. The budget for inspections has “been flatlined” since fiscal year 2015, while the number of dialysis facilities has increased by 21% to nearly 8,000 today, according to the agency. After several years of requesting more money, the centers were approved to receive an increase for fiscal year 2022.
When investigators did inspect dialysis facilities, they found some violations specific to COVID-19 and others that involved general safety lapses, according to federal records from March 2020 to July 2021.
A dialysis patient who started treatment just before the pandemic died after a nurse at a Kentucky facility failed to properly dilute an antibiotic, according to inspection reports. Minutes after the medicine began dripping through an IV, the patient said: “My body is on fire! It’s going through my whole body,” records show.
At a New York facility, another patient died after losing more than 1 1/2 pints of blood when their catheter became disconnected, according to federal records. That same facility underreported its number of deaths in the first 11 months of the pandemic by 16 people.
Federal officials issued their most serious citation to an Indiana facility for refusing to provide dialysis to a patient suspected of having COVID-19. The patient’s previous dialysis had also been cut short because their assisted living facility did not provide them transportation after 9:15 p.m. So they did not receive a complete treatment.
An estimated 5% to 10% of end-stage renal patients live in congregate settings, such as nursing homes or assisted living facilities. The same factors that led to nursing home populations being decimated — age, health, difficulty isolating — applied to those dialysis patients. In the first months of the pandemic, they contracted the virus at a rate more than 17 times higher than those who lived independently, according to one study.
Workers at those facilities weren’t immune either. Oluwayemisi Ogunnubi, 59, worked as a nurse administering dialysis to patients inside a nursing home on Chicago’s South Side. A Nigerian immigrant, she had sent money home to pay for her children’s schooling until she was able to bring them to the U.S. Her smile and supportive nature made her popular among her coworkers, according to an official at Concerto Renal Services, the dialysis company where she worked.
On April 21, 2020, Ogunnubi’s body began to ache, and she was sent home early from work. She was later taken to a hospital, where she tested positive for COVID-19. She died three days later, federal and county records show.
Occupational Safety and Health Administration officials cited Concerto, and levied a penalty of $12,145. The company provided employees who performed dialysis on patients with N95 respirators, but investigators found that Concerto’s written procedures weren’t complete and that the company had failed to provide medical evaluations that ensured employees knew how to use the respirators.
Two other Concerto employees, including one who fell ill the same day as Ogunnubi, contracted COVID-19 at the time but survived. Within two weeks of Ogunnubi’s death, 10 residents at the nursing home died of complications related to COVID-19, according to Cook County Medical Examiner records. Half had kidney failure.
Kyle Stone, Concerto’s executive vice president and general counsel, said the first and only COVID-related death of an employee shook the company. Stone said Concerto “made a difficult choice” to use respirator masks without providing medical evaluations to employees, but it “was clearly the correct choice under the circumstances.”
If Concerto had been required to fulfill every aspect of OSHA requirements for a written policy that early in the pandemic, he said, the company would not have been able to provide the respirator masks, “almost certainly resulting in greater risk of harm and death.”
OSHA’s failure to “see and appreciate” the trying circumstances at the time, Stone said, was “baffling and disappointing.” Concerto eventually settled with OSHA, which downgraded the violation and reduced the penalty to $9,000.
“We are quite proud of our work in 2020 during the eye of the COVID storm,” Stone said.
As devastating as the pandemic has been, many experts say it could have been worse. Dr. Alan Kliger, a clinical professor of medicine at Yale School of Medicine, co-chaired the American Society of Nephrology COVID-19 Response Team that held weekly calls with chief medical officers from 30 or so dialysis companies, including the largest two, DaVita and Fresenius. The facilities, Kliger said, implemented universal masking and patient screenings before the CDC recommended them. They also treated COVID-19 patients in separate shifts or at specifically designated isolation clinics.
“There’s been a tremendous amount of collaboration and sharing of information and uptake of best practices in this group of competitive companies,” Kliger said. “They really rallied together to protect patients.”
Epidemiologist Eric Weinhandl said that there’s another battle on the horizon with the omicron variant spreading rapidly, which he finds especially worrisome given how federal officials failed by not distributing vaccines to dialysis facilities in December 2020.
“It’s heartbreaking because you look at this, and much like nursing home residents, these patients are completely vulnerable. But they still have to go to a dialysis facility three times a week,” Weinhandl said. “Why wouldn’t you prioritize this population?”
The CDC said in a statement that “demand exceeded supply” when vaccines were first authorized and “as supply increased and states adopted CDC’s recommendations, older adults and those with underlying health conditions began being prioritized.”
It wasn’t until March 25 that the Biden administration announced it was partnering with dialysis facilities to send vaccines to patients at the centers.
Now, Weinhandl wonders if dialysis patients will be a priority if the federal government approves a second round of boosters for high-risk patients.
“Is there a plan? Because I think that there should be,” he said. “I think this is getting pretty predictable. Every time COVID surges, you see the dialysis population’s excess mortality surge with it.”
Sometimes the frailty of dialysis patients is no match for COVID-19’s brutality.
Oscar and Donna Perez were the kind of siblings who loved each other without judgment or condition. After Oscar began dialysis in 2018, Donna picked him up from his appointments three nights a week. She cut his toenails when his feet were too swollen for him to reach and massaged them when the pain woke him up at night.
He was her son’s godfather, her best friend who shared his love of music with her — especially the 1960s R&B singer Billy Stewart — and annoyed her in the way only brothers can, swatting her feet off chairs just as she got comfortable and pestering her with questions when she was deep into Instagram.
But Oscar Perez was sick. In addition to his failing kidneys, the 38-year-old Latino father struggled with hypertension, diabetes and congestive heart failure. In early January, doctors performed coronary bypass surgery. He was not yet eligible for the vaccine, but the hospital tested him for COVID-19 when he was admitted. He was negative.
He went home on Jan. 18, the same day as the wake for his uncle, who, his family said, died after he missed too many dialysis appointments. But the next day, Oscar collapsed at home, confused and mumbling in pain, with signs that the coronavirus was flourishing in his lungs. He was rushed back to the hospital. A doctor called to tell Donna Perez that her brother had tested positive and needed to be intubated.
On Jan. 31, doctors called Donna again and told her that her brother’s condition was declining fast. She picked up her parents, another brother and his girlfriend, and headed to the hospital to visit Oscar from outside the glass door of his room. They told doctors to try to resuscitate him if his heart stopped.
That night, after they returned home, Donna Perez’s phone rang one more time. Oscar’s doctor said he probably wasn’t going to make it through the night. This time, they could visit him in his hospital room in PPE.
Seeing her brother up close, swollen and helpless, she leaned in, hugged him, and said, “I can tell you’re tired. You can go.” Donna promised to take care of his daughter.
Her family pushed back and said she had to tell him to be strong.
Donna told them they needed to let Oscar go. He died a few hours later.
“This disaster is one that befalls dialysis patients, with diabetes especially, regularly,” Dr. David Goldfarb, clinical director of the nephrology division at NYU Langone Health in New York City, who reviewed Oscar Perez’s medical records for ProPublica.
“Of course, it’s possible to do better,” he continued. “Given his age, it’s really tragic.”
The advent of technology to filter a patient’s blood revolutionized kidney care in the 1950s, and people lined up to get access to the limited number of machines. In 1960, one hospital created its own admissions panel, later nicknamed the “God committee,” to review cases to decide who would receive the groundbreaking treatment.
Twelve years later, Congress approved legislation that created the Medicare End Stage Renal Disease program, which guaranteed coverage of medical care, including dialysis and kidney transplants. It remains the only disease-specific Medicare entitlement program, credited by some as possibly saving more lives than any other federal government program. Generally, Medicare only covers those over age 65 and the disabled, but this program is available to people of all ages with end-stage renal disease.
Total Medicare-related spending in 2019 on end-stage renal disease patients topped $50 billion. Even with that budget, the agency hasn’t been able to fix persistent health disparities. That year, Black patients were more than four times more likely than their white counterparts to have the disease.
Black patients also progressed from chronic kidney disease to end-stage renal disease three times as often as white patients. Yet they are less likely to start off their dialysis treatments on a waiting list for a transplant — or eventually receive one from a living donor — than white patients.
In a statement, Medicare said it is working to address the disparities and said it is “committed to ensuring the health and safety” of all its dialysis patients.
Another area of concern is home dialysis, which research has shown is cheaper than in-center dialysis and offers similar or better survival rates, enhanced quality of life and greater flexibility. Barriers to home dialysis affect all patients, but the percentages of Black and Hispanic patients receiving home dialysis in 2019 were 10% and 11% respectively, compared with white and Asian patients at 17% each.
The push for closing that gap has gained traction, bolstered by federal data that found COVID-19 hospitalizations rates of patients who underwent home dialysis from late March to June 2020 were between one-quarter and one-third those of patients traveling to dialysis facilities.
“We do have to figure out a way to do better because we’re really, in essence, causing harm, when we’re not able to divert proper resources to patients who most require them,” said Dr. Kirk Campbell, a nephrology professor and vice chair of medicine for diversity, equity and inclusion at the Icahn School of Medicine at Mount Sinai in New York City.
Some patients don’t have the space to store the supplies needed for home dialysis. Others are overwhelmed by the prospect of having to keep the area around the catheter clean to prevent infection. But, Campbell said, that’s where patient education comes in. The most common type of home dialysis, called peritoneal dialysis, often is done at night while the patient is sleeping and does not involve blood flowing outside the body.
While home dialysis isn’t possible for all patients, some doctors are hesitant to recommend it at all, in part because the clinicians lack the training, experience or a certain comfort level with it. That’s especially true, Campbell said, for patients of color and those from disadvantaged backgrounds. There’s often an unconscious bias that those patients won’t be able to handle it, he said.
Campbell and others said it’s critical that clinicians receive additional training in home dialysis. He leads one of the few nephrology fellowship programs in the country where doctors can spend an extra year specializing in home dialysis. The results have been so promising, he said, that they hope to expand.
In July 2019, the Trump administration issued an executive order aimed at revamping kidney care in the United States through the Department of Health and Human Services’ Advancing American Kidney Health initiative. The goals of the initiative were lofty — some say unrealistic — and included having 80% of new end-stage renal disease patients in the U.S. receive in-home dialysis or transplants by 2025. In 1972, the year the Medicare program passed, 40% of patients were on home dialysis. Currently, about 13% of patients are receiving dialysis at home.
Starting January, the Centers for Medicare & Medicaid Services will offer facilities greater reimbursement for improving their home dialysis rates for low-income patients.
Some observers say the change doesn’t go far enough. In September, U.S. Rep. Bobby Rush, an Illinois Democrat, and Rep. Jason Smith, a Republican from Missouri, proposed legislation that would require Medicare to pay for workers to assist patients who need additional help with home dialysis. The measure, which was introduced without much fanfare, also calls for greater patient education around the treatment and a federal study analyzing racial disparities.
Hong Kong, where about three in four patients are on peritoneal dialysis, is a global leader in home treatment. Patients there receive peritoneal dialysis first unless there is a medical reason that would preclude it.
Dr. Isaac Teitelbaum, a nephrologist who has been the medical director of the home dialysis unit at the University of Colorado School of Medicine since 1986, said expanded training for clinicians and incentives for patients, including a reduced co-pay or a tax credit, could encourage more patients to dialyze at home.
“You don’t live just so you can do dialysis. You do dialysis so that you can enjoy life,” he said. “You do dialysis so that you can watch your children and grandchildren grow up and so that you can participate in family events and go on vacations.”
Cheryl Cosey was not offered home dialysis, her family said. Shardae Lovelady said it might have made all the difference for her mother.
Cosey’s health deteriorated quickly after the call from her hospital bed. Doctors transferred Cosey to the intensive care unit, put her on a ventilator and gave her medication to push the oxygen from her lungs into her bloodstream, according to hospital records.
The family braced themselves. Lovelady drove to Minnesota to pick up her sister. She gathered everyone for a big dinner the way her mother used to do.
Lovelady and her sister stayed up late talking, finally dozing off when the house quieted.
When the phone rang at three in the morning, Lovelady recognized the hospital’s 312 area code.
Everything she had done to prepare for that moment suddenly vanished, and she allowed herself to hope.
The call was short. She never even flipped on the bedroom light. She turned to her sister, who was asleep next to her, and nudged her awake.
The same people who organized Trump’s fateful rally on the Ellipse had something else in store on Jan. 6: a separate, previously unreported rally planned in front of the Supreme Court.
Jared Schmeck, a father who went viral for trolling President Biden with the MAGA chant “let’s go Brandon” during a call into NORAD’s “Santa Tracker” on Christmas Eve, on Monday appeared on Steve Bannon’s podcast to push the Big Lie of a “stolen” 2020 election.
Michael Gableman, the former Wisconsin state Supreme Court justice leading the Wisconsin legislature’s Trumpified investigation into the 2020 election, is calling on the lone elected Republican who criticized him to resign.
Former President Trump’s spokesperson, Taylor Budowich, sued the Jan. 6 committee on Friday in an effort to block the panel from obtaining his financial records — and, in doing so, gave an account of his cooperation with the investigation so far.
While anti-partisan gerrymandering legislation languishes in a Senate gridlocked by Republicans and the filibuster, both parties on the state level are actively mapping out how best to craft congressional districts to give them easy wins.
This story first appeared at ProPublica. ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.
For Nancy Donley, the fight for safer food started one agonizing summer night in 1993.
She and her family had hamburgers for dinner, and soon after, her 6-year-old son Alex complained of a stomachache. Within hours, he had curled himself into a ball and was begging his mother for comfort.
The next morning, thinking Alex might have appendicitis, Donley took him to the pediatrician. The doctor sent Alex to the emergency room at a children’s hospital near their home in Chicago.
A toxin was invading the boy’s body. Blood began to flow from Alex’s bowels, and when he became too weak to stand, Donley helped change a stream of soaked diapers. Soon Alex lost neurological control and battled tremors and hallucinations. His kidneys shut down, then his lungs. After Alex suffered a massive seizure, his mother watched as the brain waves on his monitor flatlined. “He was gone,” Donley said.
On July 18, 1993, Alex died of hemolytic uremic syndrome, which can result when bacteria damages the blood vessels.
In Alex’s case, it was caused by a dangerous strain of E. coli known as O157:H7, which originates in livestock feces.
It was the same bacteria that had generated national headlines less than a year before when it killed four children who had eaten Jack in the Box hamburgers. Federal officials had closed their investigation into the “hamburger disease” in February 1993, but the pathogen was still circulating because the country’s turn-of-the-century meat safety laws didn’t outlaw the sale of bacteria-tainted beef.
The children’s deaths captured the attention of policymakers and spawned a fervent push for safer food. Donley, seeking to channel the anger and grief that consumed her, joined the fight. “Alex was very much let down by industry, by government,” she said.
Donley became a prominent national voice for food safety, successfully pushing the U.S. Department of Agriculture to take steps toward modernizing meat inspection and inspiring officials to ban the sale of meat contaminated with the type of E. coli that killed Alex.
These victories in the early years of her advocacy seemed to presage sweeping changes to the country’s food safety system, a maze of 15 agencies operating under nearly three dozen laws, with no single person or entity in charge.
But then one effort at reform after another fell short, leaving Donley deeply frustrated — and leaving the failed regulatory scheme much as it was.
“To say it’s broken suggests that it was working properly before,” said Thomas Gremillion, the director of food policy for the Consumer Federation of America. “We’ve just followed this path and it’s become more and more dysfunctional.”
ProPublica’s recent investigation into a nearly four-year-old salmonella outbreak found that when an antibiotic-resistant strain took hold of the chicken industry, food safety officials were powerless to stop it from sickening the public.
That outbreak, which continues to this day, was yet another reminder of the shortcomings that for more than 70 years have led consumer advocates like Donley, along with government experts, members of Congress and several presidents, to call for a single food safety agency.
But the idea has stalled again and again, easy to propose but all but impossible to enact.
Over the last 25 years, three presidents — Bill Clinton, Barack Obama and Donald Trump — have proposed unifying the food safety system, but none of them have made it a political priority. The Clinton administration, for example, released its plan on his last day in office.
Since 1970, the nonpartisan investigative arm of Congress now known as the Government Accountability Office has issued 16 reports documenting the dysfunction of our food safety system. But the GAO’s repeated calls to create a single agency have gone unheeded.
Congress has held more than two dozen hearings where the idea was raised, often prompted by one of those damning GAO reports or by news of a deadly outbreak somewhere in the country. And over the last two decades, legislators have introduced 10 bills that proposed creating a single agency.
But none of them stood a chance. The congressional committees that oversee various arms of the food safety system have shown little appetite for giving up power — as some would have to do if the bureaucracy were consolidated into a single agency.
So the country remains saddled with a system that prohibits meat safety inspectors from regulating farms, that makes cheese pizza the purview of one agency and pepperoni pizza the responsibility of another, and that can’t ban raw poultry tainted with dangerous strains of salmonella — unless it’s in pet food.
To understand why comprehensive food safety reforms have proved so elusive, ProPublica reviewed decades of government reports and hundreds of pages of congressional testimony, in addition to interviewing current and former food safety officials, industry representatives, consumer advocates, White House advisers, and members of Congress and their staffers.
Our examination shows a recurrent cycle of good intentions and government inaction. Outbreaks involving hamburgers, peanut butter or spinach spark angry rhetoric followed by bills, congressional hearings and presidential commissions. These, in turn, have in some instances led to notable changes that nonetheless left the system fundamentally flawed.
Michael R. Taylor, who held food safety posts at both the USDA and the Food and Drug Administration, helped push through the ban on the E. coli strain that had killed Alex Donley. But in the decades since that breakthrough, he’s seen the country grow inured to the vulnerabilities in its food safety system and indifferent to the pleas of parents like Nancy Donley.
In the end, Taylor said, there’s an unwillingness to undertake the large-scale improvements needed to ensure the country’s food is safe. “Nobody cares enough,” he said.
A Conflict More Than a Century Old
When U.S. food safety regulations were first devised in the late 1800s, all of the responsibility fell to the USDA. But from the start, the agency had to grapple with dueling agendas. While the secretary of agriculture was charged with supporting American food producers, the head of the agency’s Bureau of Chemistry tracked tainted foods and pushed aggressively for poisonous and impure products to be removed from the market. For decades, the two positions were at loggerheads.
In 1940 President Franklin D. Roosevelt tried to resolve the USDA’s internal conflicts when he moved the chemistry bureau — what had become the FDA — to what is now the Department of Health and Human Services.
That move cemented the split in food regulation. Meat and poultry remained under the USDA while most other foods fell to the FDA, setting up the present system, where the FDA inspects production lines making frozen cheese pizzas and sandwiches while the USDA inspects the lines that turn out frozen pepperoni pizzas and open-faced sandwiches.
It wasn’t long before there were calls to reunify the system. The Hoover Commission, created by President Harry Truman to improve government efficiency, said in 1949 that the multiplicity of agencies regulating food “creates great overlap and also confuses the public.” The commission concluded that all of the federal food safety responsibilities should be transferred to the USDA, but the recommendation went nowhere.
Confusion and conflict continued to plague the system.
In 1975, a consumer advocacy group tested eight brands of beef and poultry pot pies and found rodent hairs or insect parts in every package. The group petitioned the FDA to set limits on the amount of “filth” that could be found in the product, but the FDA forwarded the request to the USDA. A month later, the USDA returned the petition to the FDA, telling the consumer group that “while it is true that the production of meat and poultry pies is subject to USDA’s inspection program, the responsibility for the wholesomeness of spices delivered for use in meat and poultry plants rests with the FDA.”
In the end, neither agency took any action.
Over the years, Congress and various presidential administrations have complicated the regulatory landscape by assigning pieces of food safety to other agencies. The Environmental Protection Agency has been charged with overseeing drinking water and pesticides, for example, while the National Oceanic and Atmospheric Administration was tasked with grading seafood. Today, a total of 15 agencies have a hand in food safety, but the primary divisions are between the FDA and the USDA, which regulate the vast majority of the country’s food supply.
The GAO has repeatedly urged changes to the fragmented food-inspection system. This year, in its most recent review of food safety, the GAO noted that a number of its longstanding recommendations, including one dating back 20 years, have gone unfulfilled by Congress and the White House.
Many have come to see the GAO’s critiques as out of touch with the political realities of Washington and more aspirational than actionable. “When you’re talking about overhauling the entire statutory scheme that governs food safety, it’s an unimaginable task,” said Timothy Lytton, a Georgia State University law professor who has studied food safety regulation. “I mean, this Congress can barely get a budget passed.”
The four congressional committees that oversee the USDA and FDA are at the heart of why the U.S. hasn’t moved toward a single food safety agency, experts say. The agriculture committees in the House and Senate would, for example, have to relinquish aspects of their oversight authority if the Agriculture Department’s food safety functions were shifted out of the agency. “The people in charge of reorganizing that structure would have to give up the one piece of leverage that they have politically that’s useful for them,” Lytton said.
For many years in the late 2000s and early 2010s, former Rep. Jack Kingston of Georgia was the top Republican on the House subcommittee that made appropriations to the USDA and the FDA. Congressional committees are fiercely protective, he said. “They don’t want to give up what they consider their territory or areas of expertise.”
“Continuing this disjointed approach to oversight will only put more consumers at risk of serious or fatal foodborne illness,” Durbin told ProPublica in a statement. “By creating a single, independent food safety agency, Americans can gather around the dinner table knowing that their meal is safe for them and their family.”
Durbin and DeLauro’s most recent bill, the Safe Food Act of 2019, received little attention and didn’t move forward after it was introduced.
Even supporters of a single food safety agency were skeptical of its prospects. “It was a messaging bill,” said Gremillion of the Consumer Federation of America, which backed the legislation. “At the end of the day, I don’t think anyone expected the Safe Food Act to be seriously debated in Congress.”
Many Proposals, but Little Desire to Act
Perhaps one of the clearest opportunities to create a single food safety agency came in 1993, after the E. coli outbreak in Jack in the Box hamburgers killed four children under the age of 7. The incident put food safety on the Clinton administration’s priority list, and it seemed to create an opening for a serious national discussion about reorganizing the system.
Within months of the outbreak’s end, the White House recommended that all federal food safety oversight be taken over by the FDA.
Consumer advocates favored the idea, as did some former USDA officials, who complained in congressional hearings that the Agriculture Department’s efforts on food safety were outdated and reactive. But some influential members of Congress wanted the USDA to handle the country’s food safety regulation, while the meat industry was divided on the idea of moving everything under a single agency.
Then-Rep. Edolphus Towns, D-N.Y., the House subcommittee chair who convened a May 1994 hearing and advocated for a comprehensive food safety policy, also wasn’t sure that creating one agency was the solution. “Simply changing the organizational boxes will not save lives,” he said during the hearing.
By 1996, the Clinton administration had retreated on the issue. A White House report focused instead on improving coordination between the agencies and enacting more easily attainable policies, like requiring meat plants to develop and implement plans that curb food safety hazards.
A fresh chance for a single system came in 1998. The National Academy of Sciences issued a report that echoed decades of concern about the “inconsistent, uneven, and at times archaic food statutes.” The authors called on Congress to rewrite the laws so that food safety would be overseen by a single official.
Clinton, in his second term, responded by creating the Council on Food Safety. It was charged with creating a strategic plan for “a seamless, science-based food safety system.” It resurrected the idea of consolidation, arguing that “it is in the best interest of the American consumer to have a comprehensive food safety statute with a corresponding organizational structure.”
But what was supposed to be a roadmap to reform only led to another dead end. It was released the day before Clinton’s second term ended in January 2001.
After President George W. Bush took office, his administration made it clear through a White House policy committee that it saw interagency coordination — not consolidation — as the key to an improved food safety system.
Still, government efficiency drew some Republicans to the idea of a single food safety agency. Early in Bush’s second term, then-Rep. Jon C. Porter, a Republican from Nevada, convened a hearing titled, “Question: What Is More Scrambled Than An Egg? Answer: The Federal Food Inspection System.”
Within a few minutes of the hearing’s start, Porter ventured that he already knew who was responsible for the byzantine system. “The blame lies primarily with Congress, which has haphazardly passed the laws making the system what it is today throughout the years,” he said.
The moment of introspection did not lead to policy changes, however. A couple years later, the idea of a single food safety agency got another boost when Democrats won control of Congress and DeLauro became chair of the appropriations subcommittee that funds the USDA and the FDA.
For years, she’d been introducing legislation that would unify the food safety system. Her powerful new role seemed to offer an opportunity to advance the idea.
But Brian Ronholm, an ex-DeLauro staffer and former USDA official, said her ascension did not eliminate the power dynamics that had long stalled the idea. And DeLauro’s early efforts faced a newer obstacle — the creation of the Department of Homeland Security after 9/11, a complicated reorganization of nearly two dozen agencies that some in Washington saw as a cautionary tale about the kind of culture clashes and mismanagement that can result from combining bureaucracies.
“It has created such an overwhelming narrative about the consolidation of agencies that I think it still impacts the debate now,” said Ronholm, now the director of food policy at Consumer Reports.
Another deadly outbreak in 2009 seemed to open the door yet again. More than 700 fell sick and nine people died after contracting salmonella poisoning from peanut products. Obama announced on NBC’s “Today” show that his administration intended to examine why the FDA hadn’t caught the problem faster. And DeLauro reignited the push to restructure food safety by introducing a bill in 2009 that would have established a Food Safety Administration.
But even with an expanded Democratic majority in the House, DeLauro, who declined to comment for this story, could not secure a formal hearing for her bill. And when the idea for a single agency did come up in Congress, at a Senate hearing looking into the peanut scandal, support for a unified system was underwhelming.
Then-Sen. Tom Harkin, D-Iowa, asked a panel of consumer advocates if a single regulatory agency would improve food safety. They weren’t so sure. Echoing earlier comments, a former FDA commissioner asked whether reorganizing the system would simply cause too many logistical headaches. “Would you spend all your time moving boxes as opposed to fixing the problem?”
The Obama administration tried to make one last attempt at food safety consolidation toward the end of his second term. His 2016 budget request proposed creating a new agency under the Department of Health and Human Services. The idea had a noteworthy supporter: Agriculture Secretary Tom Vilsack.
In a Congressional hearing, Vilsack told legislators that he had met with the parents of a child who had died after eating a hamburger tainted with E. coli, and he was convinced that creating a single agency would improve government accountability. “You would be able to point the finger at the agency that is responsible for food safety and say, ‘Why did you not do your job?’” Vilsack told legislators.
But the support of the USDA’s highest official wasn’t enough. Congressional aides said that too much political energy had already been spent on passing the Food Safety Modernization Act, which led to major changes to the FDA. And a few years after it became law in 2011, policymakers remained focused on the intricacies of implementing the legislation, leaving little bandwidth for another big reform effort.
In 2018, Trump revived the idea of the USDA assuming responsibility for all federal food safety. But it was widely viewed as little more than a way to burnish his administration’s credentials on government efficiency.
Katy Talento, Trump’s health adviser on the Domestic Policy Council, told ProPublica that “it wasn’t something that policy councils were working on.”
Vilsack, who has returned to the USDA’s top post under President Joe Biden, said in a statement that he still believes the country would be “better off with a single food safety agency” and that “from an efficiency perspective it’s common sense.”
A Push to Update Food Safety Laws
As proposals to unify food safety have ebbed and flowed, longtime proponents of a single agency say they’ve come to believe that modernizing food safety laws needs to happen first.
After the peanut outbreak, even as the idea of a single agency stalled yet again, support was building for reforms at the FDA. Like the USDA, the FDA was largely governed by laws written early in the 20th century. Those laws, for example, didn’t consider the role that bacteria play in food safety. But the increasing frequency of E. coli and salmonella outbreaks in foods regulated by the FDA, such as lettuce, had persuaded legislators, consumer advocates and even the food industry that the FDA needed new powers suited to the 21st century food supply. The Food Safety Modernization Act gave the FDA authority to issue recalls for tainted food and, given the growth in imported foods, to regulate products from abroad.
The USDA still can’t issue recalls, and efforts to expand its authority have been stagnant. “The problem, in terms of the effectiveness of the food safety system, isn’t just the organizational division,” said Taylor, the former federal official. He now serves on the board of the consumer group Stop Foodborne Illness. The USDA’s Food Safety and Inspection Service remains limited in its ability to prevent the sale of meat and poultry tainted with disease-causing bacteria and is operating under antiquated statutes that “weren’t conceived with today’s problems in mind,” he said.
But the meat industry hasn’t embraced the prospect of modernized meat safety laws. “A lot of people in the meat and poultry industry have said, ‘Hey, we’re comfortable with the system that we have, we understand it,’” said Mike Robach, a former food safety executive at the meat processing giant Cargill and a supporter of updating meat inspection. “I think there’s general apprehension about opening the book and just staring at a blank page.”
As a result, what changes are made are done incrementally, through the federal rulemaking process, not through legislation, which is far less easy to roll back when a new administration takes office. The USDA recently announced that it will “rethink” its approach to salmonella in raw meat and poultry. But it’s been more than 25 years since the Jack in the Box outbreak spurred major changes at the USDA.
The lack of progress has worn down even food safety’s most ardent activists. Nancy Donley, who had a leadership role with Stop Foodborne Illness for about two decades, said she began to back away from advocacy work about five years ago because “there was nothing on the slate to really fight for.”
“I just got tired,” she said. “I mean, the death of your child never ever goes away. But you change. It gets different. You never get over it, you get through it. That trite expression is true. But I would be picking open that scab every single trip I’d make, every single meeting I’d attend. You’re picking open that scab and exposing the wound again and again and again and again.”
In a 1999 congressional hearing where she’d advocated for a single food safety agency, Donley had opened her remarks by acknowledging that she hadn’t spent much time thinking about food safety until it affected her personally.
“Until July 18, 1993, food safety was a non-issue as far as I was concerned,” Donley told lawmakers. “I did what most of the public does. I assumed that the food we fed our families was safe. I assumed that our government had the situation of ensuring the safest food supply possible well in hand. I assumed that the food industry was governed under the strictest of regulations to produce food to have the highest safety level possible. I assumed that companies violating food safety law were dealt with swiftly and harshly. I assumed that there was an entity ultimately responsible for protecting my family from unsafe food. I assumed wrong on all counts. Dead wrong.”
It’s been nearly three decades since Donley first began to demand a safer food system. Alex would have been 34 this year if he had lived, turning 35 next month, and his mother is left to wonder what kind of tragedy it would take for policymakers to actually tackle the problem head-on.
“Does it have to be yours?” she asked recently. “Is that what it’s gonna take to get it?”
