Two years after the Trump administration walked away from charging Walmart criminally for its role in the opioid crisis, the DOJ is back, making the same claims but seeking softer penalties.
This article was published on Wednesday, December 23, 2020 in ProPublica.
More than two years after the federal government was preparing to indict Walmart on charges of illegally dispensing opioids, the U.S. Department of Justice is finally taking action. But it’s seeking a financial penalty, not the criminal sanction prosecutors had pushed for.
On Tuesday, the Department of Justice brought a civil suit against Walmart in U.S. District Court in Delaware, accusing the retailing behemoth of illegally dispensing and distributing opioids, helping to fuel a health crisis that has led to the deaths of around half a million Americans since 1999.
The government accuses the company, which operates one of the biggest pharmacy chains in the country, of knowingly filling thousands of invalid opioid prescriptions, failing to alert the government to dangerous or excessive prescriptions, and pushing pharmacists to work faster and look the other way in order to boost corporate profits.
By law, pharmacists are prohibited from filling prescriptions they know are not for legitimate medical needs. “Walmart was well aware of these rules, but made little effort to ensure that it complied with them,” the government said in its suit.
Walmart applied “enormous pressure” on pharmacists to fill prescriptions as fast as they could, while preventing them from halting prescriptions they knew came from bad doctors, the government said. When Walmart pharmacists warned headquarters in Bentonville, Arkansas, about doctors who operated “known pill mills,” did “not practice real medicine” and had “horrendous prescribing practices,” headquarters ignored their pleas, the lawsuit asserts.
Walmart denounced the suit. “The Justice Department’s investigation is tainted by historical ethics violations, and this lawsuit invents a legal theory that unlawfully forces pharmacists to come between patients and their doctors, and is riddled with factual inaccuracies and cherry-picked documents taken out of context,” the company said in a statement. In October, aware that a government suit was likely, Walmart took the highly unusual step of preemptively suing the Justice Department. The company argued that it did nothing wrong and, there, too, accused the government of acting unethically. According to Walmart, the federal prosecutors used the threat of a criminal case to try to negotiate higher civil penalties. (Prosecutors deny that claim.)
The case against Walmart originated in the summer of 2016, with an investigation of two Texas doctors, Howard Diamond and Randall Wade, who were prescribing opioids on a vast scale. Federal prosecutors in the Eastern District of Texas eventually brought cases against the pair, accusing them of contributing to multiple deaths. The doctors were subsequently convicted of illegal distribution of opioids, with Wade sentenced to 10 years in prison and Diamond to 20 years. That case uncovered evidence that led prosecutors to investigate Walmart itself.
In 2018, Joe Brown, the Trump-appointed U.S. attorney in the Eastern District of Texas, sought to criminally indict the company over its opioid practices, as detailed in a ProPublica story in March. During this period, as Walmart tried to fend off a criminal case, its lawyers expressed willingness to discuss a civil settlement. The company “stands ready to engage in a principled and reasoned dialogue concerning any potential conduct of its employees that merits a civil penalty,” Jones Day partner Karen Hewitt wrote in August 2018 to the head of the criminal division of the Justice Department.
The Texas prosecutors were unswayed by Walmart’s arguments. Joined by the head of the Drug Enforcement Administration, Brown’s team traveled to Justice Department headquarters in Washington to make an impassioned plea to bring the criminal case.
But Trump appointees at the highest levels of the department — including the deputy attorneys general at different times, Rod Rosenstein and Jeffrey Rosen — stymied the attempt, dictating that Walmart could not be indicted. (Rosen recently was named acting attorney general.) When prosecutors sought to criminally prosecute a Walmart manager, top officials in the Trump Justice Department prevented that, too.
The Justice Department then dragged out civil settlement negotiations. The delays prompted Josh Russ, the head of the civil division in the Eastern District of Texas who had urged bringing a civil suit years ago, to resign in protest. “Corporations cannot poison Americans with impunity. Good sense dictates stern and swift action when Americans die,” Russ wrote in his resignation letter in October 2019.
This week’s suit largely echoes the allegations that the Eastern District of Texas had made in seeking a criminal case. Legal officials can in some circumstances pursue the same allegations either criminally or civilly, with a higher burden of proof for prosecutors and stiffer potential penalties for defendants when it comes to criminal cases.
In the new suit, prosecutors said Walmart pharmacists routinely filled prescriptions from known “pill mill” doctors. Sometimes those doctors explicitly told their patients to go to Walmart pharmacies, the complaint alleges. Walmart filled prescriptions from doctors even when its pharmacists knew that other pharmacies had stopped filling prescriptions from those doctors.
The suit also details that Walmart’s compliance unit based out of its headquarters collected “voluminous” information that its pharmacists were regularly being served invalid prescriptions, but “for years withheld that information” from its pharmacists.
In fact, the compliance department often sent the opposite message. When a regional manager received a list of troubling prescriptions from headquarters, he asked, “Does your team pull out any insights from these we need to highlight?”
In an email cited in the suit, which was first reported by ProPublica, a director of Health and Wellness Practice Compliance at Walmart, responded, “Driving sales and patient awareness is a far better use of our Market Directors and Market manager’s time.”
Walmart headquarters regularly put pressure on pharmacists to work faster. Managers pushed pharmacists because “shorter wait times keep patients in store,” that this was a “battle of seconds” and that “wait times are our Achilles heel!” according to the suit. Pharmacists said the pressure and Walmart’s thin staffing “doesn’t allow time for individual evaluation of prescriptions,” the suit says.
In May, two months after ProPublica published its story, Brown, the U.S. attorney who had pushed for criminal prosecution of Walmart, left his job abruptly. His resignation letter cited the need to “win the fight against opioid abuse in order to save our country” and added that “players both big and small must meet equal justice under the law.” Brown did not return a call seeking comment.
Dr. José Baselga resigned as chief medical officer after payments he received from for-profit health care companies came to light in 2018. Then, Memorial Sloan Kettering quietly gave him a $1.5 million severance package, according to IRS documents.
This article was published on Tuesday, December 22, 2020 in ProPublica.
Dec. 22, 2:04 p.m. EST In 2018, Memorial Sloan Kettering Cancer Center's chief medical officer, Dr. José Baselga, resigned under fire over his failure to disclose payments from health care companies in dozens of research articles he wrote.
Now, recent Internal Revenue Service filings show the nonprofit hospital paid more than $1.5 million in severance to Baselga in 2018 and 2019.
The revelations about the former executive led to significant changes governing Memorial Sloan Kettering's ties to the health care and pharmaceutical industries and prompted an overhaul of its conflict-of-interest policies. The disclosure failures, which were uncovered by The New York Times and ProPublica, also led to a broader reexamination of how medical journals enforce their conflict-of-interest policies as well as heightened scrutiny of the relationships between medical researchers and for-profit companies at cancer centers around the country.
The hospital would not say whether it paid additional severance to Baselga in 2020. A spokeswoman said the past payments reflected the hospital's "contractual obligation" to Baselga under his employment agreement.
Baselga now is an executive at the pharmaceutical company AstraZeneca, where he oversees development of its cancer drugs. He declined to comment through a company spokeswoman.
Nonprofit institutions, like many of their for-profit counterparts, often enter into employment contracts with top officials that provide compensation upon their departure. And it's difficult to break those agreements except in situations like court determinations of illegality, said Marcus S. Owens, who ran the IRS division that oversees nonprofits during the administrations of Presidents George H. W. Bush and Bill Clinton.
That said, nonprofits, by law, must disclose the nature of their severance agreements for key officials in their IRS filings. The large payment to Baselga was striking given how significantly his departure rattled the institution.
In the fall of 2018, Memorial Sloan Kettering's chief executive, Dr. Craig B. Thompson, apologized to his staff for the handling of the episode, saying, "the events of the last few weeks have not been handled as well as I would have liked."
At the same time, the then-chairman of the board, Douglas A. Warner III, disparaged Baselga, who also held the title of physician in chief, saying he "crossed lines" and "went off the reservation" in his dealings with for-profit companies.
Even though Baselga officially resigned from his position, Warner suggested that the departure was not voluntary, saying that despite Baselga's talents, he "left us no choice."
Baselga was a prominent researcher and a prolific author of medical articles. In his resignation letter, he acknowledged his lapses and said the controversy had proved to be "too much of a distraction."
Baselga also stepped down from the boards of the drugmaker Bristol-Myers Squibb and Varian Medical Systems, a radiation equipment manufacturer, as well as the cancer journal where he had been an editor
After months of review, Memorial Sloan Kettering overhauled its conflict-of-interest policy, barring its top executives from serving on corporate boards of drug and health care companies and placing limits on how executives and top researchers could profit from work developed at the institution.
Like other major hospitals, Memorial Sloan Kettering's finances have taken a hit during the coronavirus pandemic. For the first three quarters of 2020, the hospital reported an operating loss of $453 million compared with an operating profit of nearly $77 million in the first nine months of 2019. The hospital saw a decline in surgical procedures and clinic visits, as well as clinical trials and other research. The hospital did receive $100 million in relief funds as part of the Coronavirus Aid, Relief and Economic Security (CARES) Act.
Baselga wasn't the only former official to receive severance from Memorial Sloan Kettering in 2019. It also paid more than $250,000 in severance to Avice Meehan, the hospital's former chief communications officer, according to its IRS filing. Meehan declined to comment.
Laurie Styron, the executive director of CharityWatch, an independent watchdog group, said that hospitals often compensate their staff generously because they must attract highly trained and educated doctors who would be well-paid elsewhere. Still, she said, the multimillion-dollar sums can surprise donors, who typically give money to support research or patient care.
"The reactions we get from donors are negative when they hear that they, as a middle-class working person, sent in what they could toward a charitable cause and then they find out that someone is making millions of dollars," she said.
So many workers at a hospital in Texas’ Rio Grande Valley declined the new COVID-19 vaccine that the facility offered doses to other medical workers in the region. It turns out, the vaccine ended up going to non-medical personnel as well.
This article was published on Monday, December 21, 2020 in ProPublica.
So many workers at a hospital in Texas’ Rio Grande Valley declined the new COVID-19 vaccine that the facility offered doses to other medical workers in the region. Many showed up, but so did a state lawmaker, a police officer and a sheriff’s deputy who weren’t on the state’s priority list for vaccination.
Hospitals across Texas began to receive the first batches of the Pfizer COVID-19 vaccine over the last several days. Doctors Hospital at Renaissance in Edinburg, one of the Texas facilities hardest hit by the virus this year, received 5,850 doses of the vaccine.
State guidelines say these initial batches should go to front-line health care workers. But how the actual distribution works may look different from facility to facility as each interprets those state recommendations.
Dr. Robert Martinez, the DHR Health chief medical officer, said hospital officials prioritized employees considered in the first tier for a dose, like hospital staff who work directly with COVID-19 patients and long-term care workers. But administrators realized not enough people eligible for the vaccine were initially going to opt to get it, Martinez said.
“You start to see similar numbers across the country, all this mistrust and misinformation,” he said.
Initially, about 40% to 60% of people who answered a hospital survey said they’d get the vaccine, Martinez said. The lower-than-expected vaccine adoption rate was first reported by The Monitor.
DHR Health didn’t want to waste the vaccine doses. After the first day of distribution, the hospital started to go “down the rung ... down the ladder a little bit,” Martinez said. Hospital employees called health care workers at other medical institutions — like hospitals, nursing homes, behavioral health facilities and anyone with workers on the front lines of COVID-19 — in neighboring cities and counties in the Valley.
The Rio Grande Valley is made up of Cameron, Hidalgo, Starr and Willacy counties. Since the start of the pandemic, more than 68,000 people in the predominantly Hispanic region have tested positive for the coronavirus.
“The more the merrier here as far as I’m concerned,” said Martinez, who emphasized “it wasn’t a free for all.” He said that he and other staffers told medical workers asking if they could bring relatives not to do so.
A photojournalist working for The Texas Tribune photographed several people in line for, or receiving, the vaccines in Edinburg on Saturday. One person was state Sen. Eddie Lucio Jr., — who is also a member of the state’s COVID-19 Expert Vaccine Allocation Panel that makes recommendations to the state health commissioner on which groups should be prioritized for vaccination.
Lawmakers are not eligible for the vaccine in this first round, unless they are a health care worker, said Chris Van Deusen, spokesman for the Texas Department of State Health Services. Lucio, a Democrat whose district includes the southeast portion of the Valley, is not a health care worker. In a statement Monday, Lucio said he was invited to take the vaccine by DHR after it explained to him that all eligible workers who wanted the vaccine received it — and the surplus would have to be administered or destroyed.
“I find it shocking that there is growing concern over the COVID-19 vaccine. I believe it is the key for our state to significantly reduce the number of infections and deaths, and I hope that by demonstrating to everyone that there is nothing to fear, I can help set the tone for getting vaccinated so that more Texans will accept the vaccine as it becomes available,” Lucio said.
The lawmaker also noted that because he is over the age of 65, he is in the next tier of people who health officials said will be next in line for the vaccine.
However, state health officials said Monday that Texas is weeks away from transitioning to the next phase of vaccine distribution for those over 65. Lucio declined to make any further comments and said he was tending to people he knows who have the virus. DHR did not immediately respond to a request for comment.
The photojournalist also spoke to a man who identified himself as a Hidalgo County sheriff’s deputy. Law enforcement workers are not included in the DSHS first tier of people slated to get the vaccine.
A spokesman for the Hidalgo County sheriff’s office did not return a call for comment. Martinez said he wasn’t aware of any specifics but that law enforcement does sometimes assist hospital workers.
Van Deusen said in an email that vaccine providers “should follow the priorities set by the Expert Vaccine Allocation Panel and DSHS.” In this first phase of distribution, “The priority is to vaccinate residents of long-term care facilities and front-line health care workers who have direct interaction with patients.”
The vaccine is not reserved exclusively for a vaccine provider’s employees, Van Deusen wrote. “We encourage providers ... to reach out to other health care workers in their community to help vaccinate them.”
Among those who received the vaccine this weekend was Rio Grande Valley pharmacist Danny Vela, who got a call Saturday from someone he knows at Doctors Hospital at Renaissance. Vela is not an employee of the hospital, but he was told vaccine doses were available if he wanted one.
So Vela, a pharmacist and co-owner of Lee’s Pharmacy in the Valley, and his daughter, a Lee’s pharmacy technician, headed to the conference center across the street from the hospital, where a large vaccination operation was underway in the lobby. Two hours later, both father and daughter had gotten a dose.
Vela felt “lucky and relieved,” he said.
Van Deusen said DSHS will follow up if concerns are raised about who receives a vaccine to make sure “everyone understands the priorities at this point and what the obligations are.”
It will be months before vaccines are widely available to most Texans. Health officials have said that people should continue wearing masks, washing their hands frequently and practicing social distancing. They also say that vaccinated people could still carry and spread the virus.
Hundreds of thousands of people nationally have been vaccinated since last week. But there have been some hiccups. Stanford Medicine residents who work in close contact with COVID-19 patients were left out of the first wave of staff members for the Pfizer vaccine. In their place were higher-ranking doctors who carry a lower risk of patient transmission, ProPublica reported last week. The hospital apologized and pledged to do better.
DHR Health handed out its last dose Sunday afternoon, Martinez said. His priority, with each new vaccine shipment, will be to offer it to any front-line, DHR Health medical workers who didn’t get it the first time. But he won’t wait too long before going to the next person in line.
“Every day that I store that vaccine in a freezer is another person, or another few people, that die,” he said.
Governments along the Texas-Mexico border took a hard line to limit COVID-19's spread. Police were key to the public health response, resulting in hundreds jailed and nearly 2,000 people ticketed.
This article was published on Saturday, December 19, 2020 in ProPublica.
The day that Dallas salon owner Shelley Luther was arrested for reopening her business in defiance of Texas emergency stay-home orders, Robin Torres sat in a county jail 500 miles away facing the consequences of his own failure to follow such rules.
Luther became a conservative darling this spring for her provocation, spending two days in custody on contempt of court charges. Largely in response to her case, Texas Gov. Greg Abbott eventually prohibited the authorities from jailing anyone for violating the stay-home orders established to stop the spread of COVID-19.
Torres, by contrast, spent five weeks in the Hidalgo County jail after a police officer caught him smoking and drinking a Busch Light beer outside a convenience store just after 11 p.m. on April 3. Arrested on a public intoxication charge and for violation of the stay-home orders, Torres couldn’t afford to pay the $150 he owed on his bond. He wasn’t released until early May, one day after Luther emerged from her brief stint in jail as a celebrity, a notoriety she turned into a run for a Texas Senate seat. Meanwhile, cases like Torres’ have largely gone ignored.
“I thought I would only spend the weekend in jail,” said Torres, now 31, in a recent interview. “I ended up spending more than a month in jail.”
Torres was one of at least 300 people arrested for violating COVID-19 orders, often in conjunction with other charges, in the first six weeks of the pandemic in the Texas region known as the Rio Grande Valley, an investigation by ProPublica and The Texas Tribune found. Here, in a part of the state already teeming with law enforcement because of its location along the border with Mexico, officials took some of the hardest lines on enforcement of COVID-19 rules in Texas. Altogether, authorities here issued nearly 2,000 citations to individuals for violating the orders, the investigation found.
These counties were early adopters of curfews as a way to contain the virus. They banned nonessential travel, resulting in hundreds of individuals being stopped by law enforcement and ticketed. In at least some cases, officers used the emergency order as a reason to stop someone but then booked them for another, sometimes more serious, charge. Or, they tacked on a charge or citation for violating the emergency order even if it had little to do with the crime they were investigating, a decision that often increased bail and made it harder for people to get out of custody.
The enforcement of COVID-19 emergency orders in the Rio Grande Valley last spring provides a snapshot of what happens when such directives are applied frequently and, sometimes, aggressively. It raises questions about the role law enforcement should play in addressing public health and the toll this can take on communities of color.
Months later, some people cited for violations are still facing hundreds of dollars in fines.
In Hidalgo County, the largest in the Valley by population, the district attorney’s office reviewed 116 cases where people were arrested for violating the emergency management plan. Among these cases, nearly 3 in 10 people were charged only for the emergency order violation, the district attorney said.
In one April case, Hidalgo County sheriff’s deputies arrested Jorge Gonzalez Zuniga after they found him intoxicated and passed out in a trailer park. A long struggle followed, during which the deputies used a Taser to subdue Gonzalez. They booked him for violation of the emergency order, public intoxication and resisting arrest. Only after a day in custody did deputies discover that Gonzalez, an undocumented immigrant, had suffered a severe spinal injury. He died in a hospital months later. After an investigation by the Texas Department of Public Safety, a grand jury declined to indict the deputies, but Gonzalez’s family has filed a civil negligence claim against the sheriff’s office, according to a statement from Sheriff J.E. “Eddie” Guerra.
Although some of those arrested were familiar to police, the arrests also netted homeless people, undocumented immigrants, people who were potentially sick with COVID-19, and a high school student driving between his parents’ houses as part of a joint-custody agreement. The teen said he was told he owed $1,000.
The strong law enforcement response in the Rio Grande Valley appears to contrast sharply with other parts of the state. Although enforcement of COVID-19 orders varied significantly across Texas, its largest cities were relatively restrained in their approach, particularly in the initial months of the pandemic. In San Antonio, Texas’ second-largest city, with 1.5 million people, the Police Department issued just four coronavirus-related citations in all of April, while Pharr, a city of 80,000 in the Rio Grande Valley, issued at least 115 during the same time. Police in Austin, the state capital, issued six citations from the beginning of the pandemic until early December.
The large cities typically issued citations to businesses and business owners only after they repeatedly defied orders, if the cities gave them out at all. Some police departments gave explicit orders to officers not to arrest anyone for the emergency order charge.
Even as distribution of COVID-19 vaccines begins, cities across the country continue to battle a massive surge in virus infections, and some have adopted hard-line lockdown approaches to tamp down the new wave. El Paso began to issue more citations and imposed curfews after cases spiked there in October, though the state blocked the county’s shutdown of nonessential businesses.
Public health experts interviewed for this story raised questions about criminalizing this kind of behavior and said it could potentially be dangerous if it means people spend time in jail. At least 204 inmates in Texas jails and prisons died from COVID-19 between April 7 and Oct. 4, according to a recent study out of the University of Texas at Austin’s Lyndon B. Johnson School of Public Affairs.
Officials in the Rio Grande Valley interviewed for this story say their intentions were never punitive but were meant to combat a once-in-a-lifetime crisis. They pointed out that most of the people arrested were charged with additional, more serious crimes. One said their strict approach was largely why COVID-19 cases were relatively low in the region until Abbott started lifting restrictions on businesses in May. By August, death rates in Hidalgo County, where Torres was arrested, had surged to 88 per 100,000, more than 2½ times the rate statewide.
They also note that many of the COVID-19 violation cases were ultimately dismissed, including Torres’. He was released May 8, court records show, “in the interest of justice,” after 34 days in custody.
Despite the dismissal, Torres’ court-appointed attorney, Al Alvarez, argues that the criminal justice system was never designed to protect people from a virus.
“We want protection,” Alvarez said. “We don’t want abuses of the system.”
More Responsibility, and More Police
With nearly 1.4 million people, the four-county area that makes up the Rio Grande Valley, known colloquially as “the Valley,” rivals large cities like San Antonio and Dallas in population. But it is a uniquely bicultural place, a patchwork of small and midsize communities that lie shoulder to shoulder along the southernmost strip of the Texas-Mexico border. Spanish is often a first language.
It is a place saturated with police, a mishmash of law enforcement agencies — not just local patrol but state troopers, federal narcotics agents and immigration officers.
“In the border cities, we’re almost militarized,” said Alvarez. “We have DEA [Drug Enforcement Administration], FBI, Homeland Security, Border Patrol. We have tons of law enforcement agencies, and so everything becomes, we have all this arsenal at our discretion, and so it whips everybody up into, ‘What can we do to enforce these emergency orders?’”
The early days of the pandemic were a time of extreme uncertainty and fear in the Rio Grande Valley, because the region’s high poverty and poor health metrics put residents at particularly high risk for infection.
Even as the entire state went into lockdown, some Valley communities went further.
In late March, Hidalgo and Cameron counties, the region’s two population centers, implemented nightly curfews. One of Cameron County Judge Eddie Treviño Jr.’s orders explicitly restricted the number of people in a vehicle to two and, “when possible,” no more than one.
Treviño did not respond to a request for an interview or to questions sent to his office by ProPublica/The Texas Tribune.
Some towns initiated roadblocks and checkpoints. In early April, Cameron County Sheriff Omar Lucio set up a traffic task force to issue tickets to motorists violating the stay-home order.
Officials argue the goal of these efforts was to keep residents safe.
“Since we didn’t know how to deal with this, I took the most conservative position that I could because I knew the multiplier effect,” said Hidalgo County Judge Richard F. Cortez. “The more people that are infected, the more people that are out there that can infect others.”
Some law enforcement agencies within the counties said they were careful about how to interpret shelter-in-place orders coming from the state and their own county and municipal governments. In the initial month of the virus’ spread in Texas, orders were coming out every few weeks or even days. People could face either jail time or fines, depending on the circumstances.
The Texas government code defining violation of the emergency management plan is part of the state’s disaster act. Usually, the rule is applied in situations like hurricanes and wildfires. COVID-19 presented agencies with a totally different kind of disaster, one that meant police officers had to “blaze new trails,” said Brownsville police Cmdr. William Dietrich. The approach was to advise people, and most complied.
When it was clear a certain segment of the population would not follow the rules, “that’s when we said, ‘Hey, there’s going to have to be some kind of enforcement activity,’” Dietrich said. His department beefed up patrols during overnight curfew hours in Cameron County during the first phase of the pandemic.
Edward A. Sandoval, the first assistant district attorney in Cameron County, said that the orders were “a tool available” to officers and that applying them was at their discretion. Ultimately, those officers — many with little training on the emergency act law, and trying to protect themselves in the pandemic — were put in a position of becoming “public health police officers,” Sandoval said.
That heavy reliance on law enforcement was problematic because the approach should be a “public health” one alone, said John-Michael Torres, communications coordinator for La Unión del Pueblo Entero, a Valley-based organization that does community organizing and advocates for undocumented people. “They frame it [as], they are doing it to educate the public about the orders. In reality, the police are there to police.”
Minor Offenses, Many Arrests
Around 7:30 p.m. April 2, police from the city of Mission, in Hidalgo County, pulled over Jay Villalon, alleging that he was leaving a known drug area when he should be at home.
In the arrest report, the officer said he was assisting with the state-mandated curfew and asked Villalon, 21 at the time, if he was aware of it. Villalon eventually told the officer he had a vape pen in his pocket. The officer also found cartridges containing THC and a little more than an ounce of marijuana. He arrested Villalon for violating the emergency plan, possession of marijuana and possession of a controlled substance, a felony.
The felony charge, which is still pending, has caused Villalon stress because it’s “going to come up every time, you know, a cop searches you up or something, he wants to see your ID, he wants to run your name, and every time he runs your name he’s going to be suspicious,” he said. The emergency order violation was dismissed, according to Hidalgo County records.
ProPublica and The Tribune could not definitively determine how often the emergency orders were the reason an officer made a stop, because not every law enforcement agency provided arrest narratives. However, in two cities that provided this level of detail — Brownsville and Harlingen, both in Cameron County — emergency orders were listed as the reason for roughly 1 in 10 of the arrests.
Just as officers can legally stop someone they suspect of a crime for small infractions like failing to use a turn signal, the violation of the emergency plan was yet another reason to stop someone if they had suspicions.
“We are small towns,” said Joe Reyna, another private attorney in Hidalgo County who represented a handful of people booked for the emergency order violation, charges that were later dismissed. “The small towns know the people living in the towns, and they figure, ‘If you guys are breaking curfew, I’m going to lock them up for that, and probably I’ll find cocaine on them or find marijuana on them.’ They’re using it as a pretext.”
Ricardo Rodriguez Jr., the Hidalgo County district attorney, said his office made clear to law enforcement agencies that they could not use the emergency order as “probable cause to stop a vehicle or a person.”
ProPublica and the Tribune found that in most cases in the Valley, in the communities the news organizations analyzed, people arrested for the violation, like Villalon, also faced some other kind of criminal charge. Those charges ranged in severity, from public intoxication to DWI and assault.
But that was not always the case, especially in Progreso, a city in Hidalgo County with a population of about 6,000. Officers there stopped at least 82 people for violating the emergency plan. Nearly half the stops had no secondary charge; the most common additional charges were driving without a license and public intoxication.
Socrates Shawn, then an 18-year-old high school senior, was driving from his father’s house in Progreso Lakes, a small community just south of Progreso, to his mother’s place 24 miles away in McAllen. Shawn had to spend specific days of the week with each parent as part of their divorce decree, which applied until he finished high school. So when a Progreso police officer stopped him on April 8 for violating state orders, Shawn assumed he’d get a slap on the wrist. The Hidalgo County curfew wouldn’t start for two hours.
Instead, Shawn said the officer told him he was under arrest. The officer wrote that Shawn’s offense was a “Stay at Home Violation” on the report. “There was a ton of cars driving past and I was like, ‘Why didn't you pull them over?’” Shawn recalled. “He said, ‘Well, we're trying to pull everyone over. You guys shouldn't be driving.’” After about an hour and a half in a holding cell, Shawn said an officer told him he just had to pay $1,000 to be released, the maximum fine allowed for violating the order. He called his dad, who said in an interview with ProPublica and The Tribune that police told him he could pay with a money order that night.
Shawn was able to get out of jail without immediately paying the money, but he still owes the fine. Last he checked, it had gone up to $1,313 because, the city told him, he had missed a court date in June. However, Shawn said his court date was rescheduled multiple times, including after he took off work one day in June, only to learn the hearing was canceled. A collections agency recently contacted him, and he’s worried that a warrant could be issued for his arrest.
Progreso Police Chief Cesar Solis told ProPublica and the Tribune the money was a bond to ensure people showed up to pay the fines in court. He said officers had discretion whether to cite and release or detain people.
ProPublica and the Tribune interviewed two other people who, like Shawn, said they were told they would have to pay $1,000 for violating the stay-at-home order. One was picking up dinner. The second was a man heading to the grocery store with his 12-year-old son to pick up ingredients for the night’s carne dorada. In an interview, the man said an officer stopped him and assessed him $1,000 for violating the stay-home order and $160 because he doesn’t have a driver’s license.
“It was the first time,” the man said in Spanish. “I had never been warned.” He said the officer let him go because his son was in the car. Like Shawn, he said that his court dates have been canceled multiple times but that he’s received multiple calls from a collections agency.
Progreso’s municipal court was closed from April to July due to the pandemic, said city clerk Raul Garcia. The court resumed in August, at which time Garcia said he began assessing failure-to-appear charges. The online payment system shows Shawn was issued a $430 charge in August for failing to appear before the judge, but the other man was issued this charge in April, when Garcia said the court was closed.
Next door, in Cameron County, Brownsville police arrested at least 25 people only for violating the emergency management plan, including a homeless man twice within weeks.
On April 4, just before noon, the man told a police officer he was panhandling to collect enough funds to buy food. “He was asking for money and was out on the street for a nonessential purpose,” the officer wrote in the arrest report.
Then, just before 8 a.m. April 22, a different Brownsville police officer saw the man at the same intersection. He told him he had to be “wherever he sleeps at” and not approach vehicles. The man was arrested again.
Dietrich, the Brownsville police commander, said there is a large shelter in Brownsville where homeless people could have gone, “but these individuals are choosing not to be at these locations and to be out in the street.” He said the department prioritized arresting people for violent crimes and the emergency orders in this period to keep the jails less crowded.
All told, Brownsville police handed out more than 600 tickets from mid-March to the end of April, a strategy that Dietrich said was one of the only ways to get compliance.
Sandoval, with the Cameron County district attorney’s office, said he could not comment on the Brownsville arrests because he had not seen the reports. However, he said, “we don’t want ... someone’s economic condition to be the basis of punishment. They shouldn’t be punished because they don’t have a home.”
Sometimes, people did flout the rules. In Weslaco, in Hidalgo County, police were called to a Walmart because a man refused to wear a mask and said his constitutional rights were being violated. A struggle ensued, and an officer used a Taser on the man.
But using coercion measures, like arrests and citations, isn’t a smart way to control the virus, said Gregg S. Gonsalves, an assistant professor at the Yale School of Public Health. “If we’re going to approach the control of COVID-19, it’s going to be in this comprehensive way, largely by incentivizing behavior change, not shaming and blaming and arresting people for it,” Gonsalves said. “Getting police involved in public health is not a good idea.”
Arresting people during the pandemic also raises major concerns because jails and prisons, particularly in Texas, have been hotbeds for the virus.
Villalon, who was arrested in Mission, was transferred to the Hidalgo County Jail, where he said he was placed in a cell with dozens of other people with no hand sanitizer, no masks for him and other prisoners and no social distancing. Three people interviewed by ProPublica and The Tribune said they were either not given masks or only given masks once they began working at the jail during their time in custody.
The Hidalgo County sheriff’s office declined to be interviewed for this story.
Fines Pile Up, and Cases Are Dismissed
Outcomes for violating COVID-19 orders varied from community to community in the Valley.
Daisy Alvarado was one of more than 340 people cited by Cameron County sheriff’s deputies for violating COVID-19 orders. She was stopped while driving home from dropping off some medications she’d picked up at Walmart for her grandfather. But Alvarado didn’t have the receipts from Walmart — she said she left them with her grandfather — so she had no proof what she was doing was essential.
“It wasn’t fair because I did it for a reason,” said Alvarado, 26, who said she rarely goes anywhere now because she had a baby girl in August. “There was a lot of other vehicles. Who knows where they were going.”
Alvarado now owes Cameron County more than $750 for the ticket, which increased due to collection fees, a Cameron County court staffer said. She said she didn’t know that until she was told by a ProPublica/Tribune reporter. She was one of nearly 200 people ticketed by the sheriff’s department for emergency order violations who owed more than $700 as of mid-November.
Between late March and the end of April, the Hidalgo County sheriff’s office issued 125 citations to people for violating emergency orders, while Cameron, immediately to the east, issued more than 2½ times as many. That patchwork of rules can be problematic, said Grant M. Scheiner, president of the Texas Criminal Defense Lawyers Association. “How is a motorist supposed to know what the rules are in a jurisdiction and what the enforcement mechanism is?”
The fines that accompany these citations are “just abominable,” said Gonsalves, the professor from Yale, especially during the greatest economic crisis since the Great Depression. “Punishing by using citations makes their economic lives even more precarious.”
The Cameron County sheriff’s office did not respond to requests for an interview.
Sandoval, the Cameron County first assistant DA, said he did not know the county court had partnered with a collections agency to send letters to people with outstanding tickets until he was informed by ProPublica and the Tribune. He was “concerned” by the letters because it might imply to someone they were guilty of a crime when they have not yet gone to court. “Our interest is the pursuit of justice, it’s not necessarily the fine,” he said.
His office ultimately dismissed all 34 cases it received in which someone was charged with violation of the emergency order. He would have preferred if every officer had filed those violations as tickets. “We don’t benefit from people being in jail,” he said. But, he noted that in 31 of the cases his prosecutors dismissed, the defendants were charged with additional crimes.
He talked about the arrests in terms of the devastation felt by Valley residents over the last year. “There’s some folks that have decided that they’re more important than the community, and they continuously make decisions that put their self-interest ahead of the whole,” Sandoval said. “That has resulted with the death of people, our friends, our family and our loved ones.”
Hidalgo County prosecutors dismissed 22 of the 34 cases in which a defendant was charged only with the emergency order violation. Nine are still pending disposition. Three people pleaded guilty to the charge. Rodriguez, that county’s district attorney, said he didn’t know why the individual prosecutors dismissed the cases but said he felt all had been handled appropriately based on the orders in the county.
Available records indicate arrests for violation of the orders seemed to stop by late April in the Valley. COVID-19 continued, ravaging the region over the summer. Now it is spiking again. To date, Hidalgo County alone has reported 1,889 deaths from the virus, the second-highest total in the state, while Cameron County was seventh. In the last week, Cortez, the Hidalgo County judge, announced he had tested positive for the virus. Last month, the county sheriff had it.
Alvarez, Torres’ attorney, recently mourned a fellow attorney who died from COVID-19 at the age of 45. He knows many people in the criminal justice system who’ve lost loved ones to the disease. Torres said he tested positive for the virus this summer while waiting to begin treatment for cancer.
The virus’ toll hasn’t changed Alvarez’s opinion that rules like the emergency orders need to be applied cautiously. Everyone is affected, he said, “and the defendants are the ones who are more impacted because they are the ones that are in the risk of losing their liberty.”
“You don’t have to use the full force of the law, the hammer of the law, just to enforce something that’s a health issue,” he said.
As the coronavirus spread in China, the government stage-managed what appeared on the domestic internet to make the virus look less severe and the authorities more capable, according to thousands of leaked directives and other files.
This article was published on Saturday, December 19, 2020 in ProPublica.
In the early hours of Feb. 7, China’s powerful internet censors experienced an unfamiliar and deeply unsettling sensation. They felt they were losing control.
Yet China’s censors decided to double down. Warning of the “unprecedented challenge” Li’s passing had posed and the “butterfly effect” it may have set off, officials got to work suppressing the inconvenient news and reclaiming the narrative, according to confidential directives sent to local propaganda workers and news outlets.
They ordered news websites not to issue push notifications alerting readers to his death. They told social platforms to gradually remove his name from trending topics pages. And they activated legions of fake online commenters to flood social sites with distracting chatter, stressing the need for discretion: “As commenters fight to guide public opinion, they must conceal their identity, avoid crude patriotism and sarcastic praise, and be sleek and silent in achieving results.”
The orders were among thousands of secret government directives and other documents that were reviewed by The New York Times and ProPublica. They lay bare in extraordinary detail the systems that helped the Chinese authorities shape online opinion during the pandemic.
At a time when digital media is deepening social divides in Western democracies, China is manipulating online discourse to enforce the Communist Party’s consensus. To stage-manage what appeared on the Chinese internet early this year, the authorities issued strict commands on the content and tone of news coverage, directed paid trolls to inundate social media with party-line blather and deployed security forces to muzzle unsanctioned voices.
Though China makes no secret of its belief in rigid internet controls, the documents convey just how much behind-the-scenes effort is involved in maintaining a tight grip. It takes an enormous bureaucracy, armies of people, specialized technology made by private contractors, the constant monitoring of digital news outlets and social media platforms — and, presumably, lots of money.
It is much more than simply flipping a switch to block certain unwelcome ideas, images or pieces of news.
China’s curbs on information about the outbreak started in early January, before the novel coronavirus had even been identified definitively, the documents show. When infections started spreading rapidly a few weeks later, the authorities clamped down on anything that cast China’s response in too “negative” a light.
The United States and other countries have for months accused China of trying to hide the extent of the outbreak in its early stages. It may never be clear whether a freer flow of information from China would have prevented the outbreak from morphing into a raging global health calamity. But the documents indicate that Chinese officials tried to steer the narrative not only to prevent panic and debunk damaging falsehoods domestically. They also wanted to make the virus look less severe — and the authorities more capable — as the rest of the world was watching.
The documents include more than 3,200 directives and 1,800 memos and other files from the offices of the country’s internet regulator, the Cyberspace Administration of China, in the eastern city of Hangzhou. They also include internal files and computer code from a Chinese company, Urun Big Data Services, that makes software used by local governments to monitor internet discussion and manage armies of online commenters.
The documents were shared with The Times and ProPublica by a hacker group that calls itself CCP Unmasked, referring to the Chinese Communist Party. The Times and ProPublica independently verified the authenticity of many of the documents, some of which had been obtained separately by China Digital Times, a website that tracks Chinese internet controls.
The CAC and Urun did not respond to requests for comment.
“China has a politically weaponized system of censorship; it is refined, organized, coordinated and supported by the state’s resources,” said Xiao Qiang, a research scientist at the School of Information at the University of California, Berkeley, and the founder of China Digital Times. “It’s not just for deleting something. They also have a powerful apparatus to construct a narrative and aim it at any target with huge scale.”
“This is a huge thing,” he added. “No other country has that.”
Controlling a Narrative
China’s top leader, Xi Jinping, created the Cyberspace Administration of China in 2014 to centralize the management of internet censorship and propaganda as well as other aspects of digital policy. Today, the agency reports to the Communist Party’s powerful Central Committee, a sign of its importance to the leadership.
The CAC’s coronavirus controls began in the first week of January. An agency directive ordered news websites to use only government-published material and not to draw any parallels with the deadly SARS outbreak in China and elsewhere that began in 2002, even as the World Health Organization was noting the similarities.
At the start of February, a high-level meeting led by Xi called for tighter management of digital media, and the CAC’s offices across the country swung into action. A directive in Zhejiang Province, whose capital is Hangzhou, said the agency should not only control the message within China, but also seek to “actively influence international opinion.”
Agency workers began receiving links to virus-related articles that they were to promote on local news aggregators and social media. Directives specified which links should be featured on news sites’ home screens, how many hours they should remain online and even which headlines should appear in boldface.
Online reports should play up the heroic efforts by local medical workers dispatched to Wuhan, the Chinese city where the virus was first reported, as well as the vital contributions of Communist Party members, the agency’s orders said.
Headlines should steer clear of the words “incurable” and “fatal,” one directive said, “to avoid causing societal panic.” When covering restrictions on movement and travel, the word “lockdown” should not be used, said another. Multiple directives emphasized that “negative” news about the virus was not to be promoted.
When a prison officer in Zhejiang who lied about his travels caused an outbreak among the inmates, the CAC asked local offices to monitor the case closely because it “could easily attract attention from overseas.”
News outlets were told not to play up reports on donations and purchases of medical supplies from abroad. The concern, according to agency directives, was that such reports could cause a backlash overseas and disrupt China’s procurement efforts, which were pulling in vast amounts of personal protective equipment as the virus spread abroad.
“Avoid giving the false impression that our fight against the epidemic relies on foreign donations,” one directive said.
CAC workers flagged some on-the-ground videos for purging, including several that appear to show bodies exposed in public places. Other clips that were flagged appear to show people yelling angrily inside a hospital, workers hauling a corpse out of an apartment and a quarantined child crying for her mother. The videos’ authenticity could not be confirmed.
The agency asked local branches to craft ideas for “fun at home” content to “ease the anxieties of web users.” In one Hangzhou district, workers described a “witty and humorous” guitar ditty they had promoted. It went, “I never thought it would be true to say: To support your country, just sleep all day.”
Then came a bigger test.
“Severe Crackdown”
The death of Li, the doctor in Wuhan, loosed a geyser of emotion that threatened to tear Chinese social media out from under the CAC’s control.
It did not help when the agency’s gag order leaked onto Weibo, a popular Twitter-like platform, fueling further anger. Thousands of people flooded Li’s Weibo account with comments.
The agency had little choice but to permit expressions of grief, though only to a point. If anyone was sensationalizing the story to generate online traffic, their account should be dealt with “severely,” one directive said.
The day after Li’s death, a directive included a sample of material that was deemed to be “taking advantage of this incident to stir up public opinion”: a video interview in which Li’s mother reminisces tearfully about her son.
The scrutiny did not let up in the days that followed. “Pay particular attention to posts with pictures of candles, people wearing masks, an entirely black image or other efforts to escalate or hype the incident,” read an agency directive to local offices.
In Hangzhou, propaganda workers on round-the-clock shifts wrote up reports describing how they were ensuring people saw nothing that contradicted the soothing message from the Communist Party: that it had the virus firmly under control.
Officials in one district reported that workers in their employ had posted online comments that were read more than 40,000 times, “effectively eliminating city residents’ panic.” Workers in another county boasted of their “severe crackdown” on what they called rumors: 16 people had been investigated by the police, 14 given warnings and two detained. One district said it had 1,500 “cybersoldiers” monitoring closed chat groups on WeChat, the popular social app.
Researchers have estimated that hundreds of thousands of people in China work part-time to post comments and share content that reinforces state ideology. Many of them are low-level employees at government departments and party organizations. Universities have recruited students and teachers for the task. Local governments have held training sessions for them.
Engineers of the Troll
Government departments in China have a variety of specialized software at their disposal to shape what the public sees online.
One maker of such software, Urun, has won at least two dozen contracts with local agencies and state-owned enterprises since 2016, government procurement records show. According to an analysis of computer code and documents from Urun, the company’s products can track online trends, coordinate censorship activity and manage fake social media accounts for posting comments.
One Urun software system gives government workers a slick, easy-to-use interface for quickly adding likes to posts. Managers can use the system to assign specific tasks to commenters. The software can also track how many tasks a commenter has completed and how much that person should be paid.
According to one document describing the software, commenters in the southern city of Guangzhou are paid $25 for an original post of longer than 400 characters. Flagging a negative comment for deletion earns them 40 cents. Reposts are worth one cent apiece.
Urun makes a smartphone app that streamlines their work. They receive tasks within the app, post the requisite comments from their personal social media accounts, then upload a screenshot, ostensibly to certify that the task was completed.
The company also makes video game-like software that helps train commenters, documents show. The software splits a group of users into two teams, one red and one blue, and pits them against each other to see which can produce more popular posts.
Other Urun code is designed to monitor Chinese social media for “harmful information.” Workers can use keywords to find posts that mention sensitive topics, such as “incidents involving leadership” or “national political affairs.” They can also manually tag posts for further review.
In Hangzhou, officials appear to have used Urun software to scan the Chinese internet for keywords like “virus” and “pneumonia” in conjunction with place names, according to company data.
A Great Sea of Placidity
By the end of February, the emotional wallop of Li’s death seemed to be fading. CAC workers around Hangzhou continued to scan the internet for anything that might perturb the great sea of placidity.
One city district noted that web users were worried about how their neighborhoods were handling the trash left by people who were returning from out of town and potentially carrying the virus. Another district observed concerns about whether schools were taking adequate safety measures as students returned.
On March 12, the agency’s Hangzhou office issued a memo to all branches about new national rules for internet platforms. Local offices should set up special teams for conducting daily inspections of local websites, the memo said. Those found to have violations should be “promptly supervised and rectified.”
The Hangzhou CAC had already been keeping a quarterly scorecard for evaluating how well local platforms were managing their content. Each site started the quarter with 100 points. Points were deducted for failing to adequately police posts or comments. Points might also be added for standout performances.
In the first quarter of 2020, two local websites lost 10 points each for “publishing illegal information related to the epidemic,” that quarter’s score report said. A government portal received an extra two points for “participating actively in opinion guidance” during the outbreak.
Over time, the CAC offices’ reports returned to monitoring topics unrelated to the virus: noisy construction projects keeping people awake at night, heavy rains causing flooding in a train station.
Then, in late May, the offices received startling news: Confidential public-opinion analysis reports had somehow been published online. The agency ordered offices to purge internal reports — particularly, it said, those analyzing sentiment surrounding the epidemic.
The offices wrote back in their usual dry bureaucratese, vowing to “prevent such data from leaking out on the internet and causing a serious adverse impact to society.”
Stanford Medicine officials relied on a faulty algorithm to determine who should get vaccinated first, and it prioritized some high-ranking doctors over patient-facing medical residents.
This article was published on Friday, December 18, 2020 in ProPublica.
Stanford Medicine residents who work in close contact with COVID-19 patients were left out of the first wave of staff members for the new Pfizer vaccine. In their place were higher-ranking doctors who carry a lower risk of patient transmission, according to interviews with six residents and two other staff members and e-mail communications obtained by ProPublica.
“Residents are patient-facing, we’re the ones who have been asked to intubate, yet some attendings who have been face-timing us from home are being vaccinated before us,” said Sarah Johnson, a third-year OB-GYN resident who has delivered babies from COVID-positive patients during the pandemic. “This is the final straw to say, ‘We don’t actually care about you.’”
Another resident, who asked not to be named, said a nurse who works in an operating room for elective surgeries has been notified she’ll get the vaccine in the first wave. “We test people for COVID before elective surgeries, so by definition, we will know if those patients have COVID,” he said, so to him, it didn’t make sense that that nurse would be prioritized.
An algorithm chose who would be the first 5,000 in line. The residents said they were told they were at a disadvantage because they did not have an assigned “location” to plug into the calculation and because they are young, according to an email sent by a chief resident to his peers. Residents are the lowest-ranking doctors in a hospital. Stanford Medicine has about 1,300 across all disciplines.
Only seven made the priority vaccination list, despite the fact that this week, residents were asked to volunteer for ICU coverage in anticipation of a surge in COVID-19 cases.
Stanford Medicine didn’t respond to a request for comment on how the vaccines were allocated and whether there was a flaw in the algorithm. The tumult reflects the difficulties of ethically parceling out a limited supply of vaccine and weighing competing factors, such as age, risk of contracting the disease and comorbidities. Adding to the challenge is the angst that comes when such decisions are made without all stakeholders involved.
In a letter to Stanford leadership sent on Thursday, the chief resident council wrote, “While leadership is pointing to an error in an algorithm meant to ensure equity and justice, our understanding is this error was identified on Tuesday and a decision was made not to revise the vaccine allocation scheme before its release today.” The council asked for a timeline for vaccination of the residents and transparency regarding the algorithm.
Stanford’s administrators have begun to apologize. Dr. Niraj Sehgal, chief medical officer, sent an email to residents saying, “Please know that the perceived lack of priority for residents and fellows was not the intent at all.” He added that with the anticipated authorization of Moderna’s vaccine, “we’re increasingly confident in getting everyone vaccinated, including all of you.” He signed off with “heartfelt apologies.” Some departments appear to be trying to fix the problem on their own. Dr. Mary Hawn, chair of the department of surgery, confessed to being “disturbed and puzzled” by
the vaccination roster that “included many of the medical staff list that aren’t our physicians on the front line.” She emailed her department asking people slotted for the first wave to “bring a resident that is patient facing to get the vaccine in your place” and to ask the program director for their “buddy” assignment.
States and the federal government also don't reliably collect data so we won't have a good idea of whether the vaccine is reaching these critical populations.
This article was published on Friday, December 18, 2020 in ProPublica.
Though African Americans are being hospitalized for COVID-19 at more than triple the rate of white Americans, wariness of the new vaccine is higher in the Black population than in most communities. The U.S. Centers for Disease Control and Prevention highlighted communities of color as a "critical population" to vaccinate. But ProPublica found little in the way of concrete action to make sure that happens.
It will be up to states to make sure residents get the vaccine, but ProPublica reviewed the distribution plans of the nine states with the most Black residents and found that many have barely invested in overcoming historic mistrust of the medical establishment and high levels of vaccine hesitancy in the Black community. Few states could articulate specific measures they are taking to address the vaccine skepticism.
And it could be hard to track which populations are getting the vaccine. While the CDC has asked states to report the race and ethnicity of every recipient, along with other demographic information like age and sex, the agency doesn't appear ready to apply any downward pressure to ensure that such information will be collected.
In state vaccination registries, race and ethnicity fields are simply considered "nice to have," explained Mitchel Rothholz, chief of governance and state affiliates for the American Pharmacists Association. While other fields are mandatory, such as the patient's contact information and date of birth, leaving race and ethnicity blank "won't keep a provider from submitting the data if they don't have it."
In the initial stages, vaccines will go to people who are easy to find, like healthcare workers and nursing home residents. But barriers will increase when distribution moves to the next tier — which includes essential workers, a far larger and more amorphous group. Instead of bringing the vaccine to them, it's more likely that workers will have to seek out the vaccine, so hesitancy and lack of access will become important factors in who gets the shots and who misses out.
"There are individuals who are required to be on the front line to serve in their jobs but perhaps don't have equitable access to healthcare services or have insurance but it's a challenge to access care," said Dr. Grace Lee, a professor of pediatrics at Stanford University School of Medicine and member of the CDC's Advisory Committee on Immunization Practices, which is tasked with issuing guidance on the prioritization of COVID-19 vaccine distribution. "We can build equity into our recommendations, but implementation is where the rubber meets the road."
Hesitancy is rooted in medical exploitation and mistreatment.
About a quarter of the public feels hesitant about a COVID-19 vaccine, meaning they probably or definitely would not get it, according to a December poll by the Kaiser Family Foundation. Hesitancy was higher than average among Black adults in the survey, with 35% saying that they definitely or probably would not get vaccinated.
Mistrust of the medical community among people of color is well-founded, stemming from a history of unscrupulous medical experimentation. The infamous Tuskegee study, conducted from 1932 to 1972 by the U.S. Public Health Service, still looms large in the memories of many Black Americans, who remember how researchers knowingly withheld treatment from African American sharecroppers with syphilis in order to study the disease's progression.
But the injustices aren't confined to the past. The National Academies' Institute of Medicine has found that minorities tend to receive lower-quality healthcare than white counterparts, even when adjusting for age, income, insurance and severity of condition. Black Americans are also more likely to be uninsured and utilize primary care services less often than white Americans.
"It's not just about history. It's about the here and now," said Dr. Bisola Ojikutu, an infectious disease physician at Massachusetts General Hospital. "People point to racial injustice across the system. It's not just hospitals; people don't trust the government, or they ask about the pharmaceutical industry's profit motive. From the very beginning, Black and brown people are marginalized from the enterprise of research. They think: 'So few people look like us in research, industry and academia, why should we trust that someone at that table is thinking of our interest?'"
When it comes to vaccinations, the consequences can be grave. Black and Hispanic people are less likely to get the flu shot than white people, according to the CDC. At the same time, Black Americans have the highest rate of flu-associated hospitalizations, at 68 people per 100,000 population, compared to 38 people per 100,000 in the non-Hispanic white population.
Health officials have tried to assuage vaccine concerns in the traditional way, by publicizing specific individuals receiving the shot. The U.S. began its mass immunization effort by injecting a dose of the Pfizer-BioNTech vaccine into the left upper-arm of Sandra Lindsay, a Black woman and critical care nurse in New York.
Meanwhile, an onslaught of memes and conspiracy theories characterizing the vaccine as harmful are making the rounds on social media. One reads, "Just had the covid-19 vaccine. Feeling great," along with the picture of the character from the 1980 movie "The Elephant Man." Another image circulating on Twitter features the photos of three Black people and claims they are suffering from Bell's palsy due to the vaccine. The Twitter user who shared the image asked followers, "still want those Tuskegee 2.0 genocide vaccines?"
It may only take one or two negative headlines to further sow fear, said Komal Patel, who has 16 years of experience as a pharmacist in California. After two healthcare workers in the United Kingdom experienced allergic reactions to Pfizer's vaccine, Patel said she saw anxiety spike on social media, even though regulators have said that only people with a history of anaphylaxis — a severe or life threatening immune reaction — to ingredients in the vaccine need to avoid taking the shot. "Just two patients, and here we go, there's all this chatter."
Key states lack concrete plans to promote vaccines in Black communities.
It falls to states to make sure their residents of color are vaccinated. But the speed at which the vaccine needs to be disseminated means that states haven't had much time to plan communications efforts, said Lee, from CDC's advisory group. "How do we make sure messaging is appropriate? You may want to emphasize different messages for different communities. We don't have the time for that."
ProPublica found that few states can articulate specifically what they are doing to address vaccine skepticism in the Black community.
Texas, Georgia and Illinois' state plans make no mention of how they plan to reach and reassure their Black residents. Black communities make up between 13% and 33% of the population in the three states, according to data from the U.S. Census Bureau. None of the three states' health departments responded to requests for comment.
California's state plan includes "a public information campaign … to support vaccine confidence," but does not provide details apart from the state's intention to use social media, broadcast outlets and word of mouth. In an email, the California Department of Public Health did not provide additional information about outreach to Black residents, only saying, "this is an important issue we continue to work on."
New York also broadly suggests it would use public education events and media campaigns to reach vulnerable, underserved and vaccine-hesitant groups, but gives no details. A spokesperson said he would supply more information, but hadn't responded by Thursday.
"Media outreach is not enough," said Dr. Georges Benjamin, executive director of the American Public Health Association. "TV ads are one thing, but usually public service announcements are at midnight when nobody is listening, because that's when they're free." Normally, public health officials go to barber shops, beauty salons, bowling alleys and other popular locales to hand out flyers and answer questions, but due to the pandemic and limits on congregating, that's not an option, Benjamin said, so officials need to plan a serious social media strategy. That could involve partnering with "influencers" like sports figures and music stars by having them interview public health figures, Benjamin suggested.
Dr. Mark Kittleson, chair of the Department of Public Health at New York Medical College, said he's not surprised to hear how vague some of the state health plans are, because states often focus on providing high-level guidance while county or regional level health departments are left to execute the plan. But he said specific efforts need to be undertaken to reach residents of color. "Spokespeople for the vaccination need to be a diverse group," Kittleson said. "Dr. Tony Fauci is fantastic, but every state needs to find the leading healthcare experts that represent the diversity in their own state, whether it's Native American, African American or Latino." Kittleson also suggested partnering with churches."Especially in the African American community, when the minister stands up and says, 'Folks, you need to take your blood pressure medication and take care of yourself,' people listen to that," he said. "The church needs to be brought into the fold."
Maryland's state plan acknowledges the distrust among Black and Latino communities as well as rural residents, and says it will aim to tailor communication to each group by working with trusted community partners and representatives of vulnerable groups. A Department of Health spokesperson said in an email that "as vaccination distribution continues to ramp up, we urge all individuals to get the vaccine."
Florida's written plan includes a messaging strategy for everyone in the state, but does not specifically address the Black community. A "thorough vaccination communication plan continues to be developed in order to combat vaccine hesitancy," a spokesperson for the Florida Department of Health said in response to ProPublica's queries.
In North Carolina and Virginia, however, health officials started preparing months ago to reassure residents about potential vaccines. North Carolina formed a committee in May with leaders from marginalized communities to guide the state's overall response to the pandemic. Vaccine concerns were a priority, said Benjamin Money, deputy secretary of health services for North Carolina's Department of Health and Human Services.
The politicization of the pandemic has mobilized the Black and brown medical scientific community to dig into the research and how the vaccines work, Money said, "so that they can feel assured that the vaccine's safe and it's effective and they can convey the message to their patients and to their community constituents."
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The committee is advising North Carolina officials on their vaccine messaging and hosting a webinar for Black religious leaders. Similarly, the Virginia Department of Health has staff devoted to health equity across racial and ethnic groups and is putting on a series of town hall-style meetings speaking to specific communities of color.
Black residents in Virginia have expressed concerns about how rapidly the early vaccines were developed, said Dr. Norman Oliver, Virginia's state health commissioner.
"It all boils down to telling people the truth," Oliver said. "The first thing to let folks know is that one of the reasons why these vaccines were developed so quickly is because of the advances in technology since the last time we did vaccines; we're not trying to grow live virus and keep it under control or do attenuated virus and develop a vaccine this way."
In addition to promoting reliable information, Virginia health officials hired a company to monitor the spread of vaccine misinformation in the state and to locate where falsehoods appear to be taking hold, Oliver said. The state hopes to target its communications in places where distrust is most intense.
The CDC has set aside $6.5 million to support 10 national organizations, according to spokesperson Kristen Nordlund. The funds are "to be disbursed by each organization to their affiliates and chapters across the country so they may do immunization-focused community engagement in the local communities they serve," Nordlund said in an email. She didn't respond to questions on whether the funds had already been disbursed and to which organizations.
Data collection on the race of vaccine recipients is likely to be incomplete.
Every state has a vaccination registry, where data on administered shots is routinely reported, from childhood vaccinations to the flu shot. What's new in this pandemic is that the CDC has requested all the data be funneled up to the federal level, so it can track vaccination progress across the nation.
"Race and ethnicity data should be recorded in states' immunization data, but we do not know how reliably it is collected," said Mary Beth Kurilo, senior director of health informatics at the American Immunization Registry Association. "We really don't have good data on how well it's captured out there across the country."
Many immunization records are fed into the state's registry directly from a doctor's electronic health record system, Kurilo said, which can present technological stumbling blocks: "Is [the data] routinely captured as part of the registration process? Can they capture multiple races, which I think is something that's become increasingly important going forward?"
When asked about historic rates of compliance and how they planned to gather information on race and ethnicity of vaccine recipients this time, health departments from Georgia, Texas, Illinois, New York, Florida and California didn't respond.
Maryland's state plans indicate it intends to use information gathered through its vaccine appointment scheduling system, including demographic data gathered from recipients, to direct its communication outreach efforts. The Maryland Department of Health, which didn't provide more detailed information, said it is "currently exploring all options as far as vaccine data reporting."
North Carolina's immunization records system routinely collects race and ethnicity information, and a spokesperson told ProPublica it has that type of demographic data for 71% of people in the system. Stephanie Wheawill, director of pharmacy services at the Virginia Department of Health, said that providers will be "asked to record that information" but didn't elaborate on how the department planned to encourage or enforce compliance.
"You've got to have the data to compare," said Martha Dawson, president of the National Black Nurses Association and an associate professor at the University of Alabama at Birmingham's nursing school. "Because if you don't have the data, then we're just guessing. There's no way to know who received it if you don't take the data."
There is tension between gathering enough data to understand the extent of the rollout and the possibility that asking for too much information will scare away people who are already leery of the vaccine.
"The biggest concern people have is how will this information be used?" said Lee, from the CDC's advisory group. "People need to trust that the data will be used with a good intent. "
Rothholz, with the American Pharmacists Association, said there could be ways apart from state registries to estimate vaccine uptake among minorities. "If I'm a community pharmacy in a predominantly African American community, if I'm giving away 900 or 1000 vaccines, you can track penetration that way," he said. Geographic-based analysis, however, would depend on the shots being distributed via community pharmacies rather than by mass vaccination sites — a less likely scenario for the Pfizer vaccine, the first to be administered, which requires ultracold storage that will be difficult for many small pharmacies to manage.
It will be up to doctors and community leaders to encourage trust.
The best way to help a worried individual, whether scared about data collection or the vaccine itself, is a conversation with a trusted caregiver, according to Dr. Susan Bailey, president of the American Medical Association.
"Time and again it's been shown that one of the most valuable things to encourage a patient to undertake a change, whether it's stopping smoking or losing weight, is a one-on-one conversation with a trusted caregiver — having your physician saying, 'I took it and I really want you to take it too," she said. "But patients have to have the opportunity to ask questions, and not to be blown off or belittled or feel troublesome for asking all their questions."
"If someone says that they're afraid of being a guinea pig, maybe drill a bit deeper," Bailey suggested. "Ask, 'What are you concerned about? Are you concerned about side effects? Are you concerned that not enough people have taken it?'"
The American Academy of Family Physicians uses the mnemonic "ACT" to guide their members in conversations with patients of color, president Dr. Ada Stewart said in an email: "Be Accountable and Acknowledge both historical and contemporary transgressions against Black, brown and Indigenous communities. … Communicate safety, efficacy and harms such that individuals can weigh their own personal risk to potential benefits, and exercise Transparency with regard to the development of vaccines and the distribution process."
David Hodge, associate director of education at Tuskegee University's National Center for Bioethics in Research and Healthcare, urges Black and brown leaders such as pastors and community organizers to take control of the messaging right now and not wait for their local governments to tackle the issue.
"We're not in a position right now to be patient. We're not in a position to sit on the sidelines, we have to make it happen."
For years, JaMarcus Crews tried to get a new kidney, but corporate healthcare stood in the way. He needed dialysis to stay alive. He couldn’t miss a session, not even during a pandemic.
This article was published on Tuesday, December 15, 2020 in ProPublica.
Last winter, JaMarcus Crews forced his feet, however numb, to walk a paved public track in the town of Centreville, Alabama, until his calves cramped and sweat bloomed across his T-shirt. He knew the route well, from Library Street to Hospital Drive. He’d walked it as a kid, when he was diagnosed with Type 2 diabetes and determined to shed weight. With freckled cheeks and soft eyes, JaMarcus was built big: 6-foot-1, wide shoulders, a round torso on skinny legs. Now, at the age of 36, he was back again. The diabetes had destroyed his kidneys, and he was trying to slim down so that he could get a transplant.
On Tuesdays, Thursdays and Saturdays, from 9:30 a.m. to 1:30 in the afternoon, JaMarcus attended a clinic in Tuscaloosa operated by DaVita, one of two for-profit giants in American dialysis. About 20 patients lined the room as clear plastic tubes, coursing with blood, snaked from each person’s arm or neck into a machine. The dialyzers cleaned the waste from their bodies, which their kidneys could no longer do. When it was over, and all anyone wanted was sleep, JaMarcus drove to the wide parking lot at Target to wait for his cashier’s shift. He missed working at the bank, but a nine-to-five was no longer possible.
A stress test had recently suggested that plaque had built up in his blood vessels, giving him coronary artery disease. It was common for patients with kidney failure. If his heart was weakening, he didn’t have much time to get a kidney, but it sometimes felt as if all he did was wait. Of the roughly half a million Americans who depend on dialysis, less than 14% have made it onto a waitlist for a transplant from a deceased donor. JaMarcus had not. He’d been kept off for an array of reasons: spotty insurance, referrals that never came, misdirection about losing weight and what he needed to do to qualify. The first time we spoke, he told me several times: “Dialysis is not for life.” He was convinced that, unless he got a kidney very soon, he was going to die.
JaMarcus searched for diversions. At night, after his wife, Gail, fell asleep, he sneaked out of the house with his teenage son to drive the empty freeways and cruise by the shuttered brick downtown, letting the cold wind hit his skin. In the afternoons, when he shopped for groceries, he drove to the Walmart Supercenter instead of the closer shops, because he enjoyed the bright lights and people-watching, as if it were a mall. JaMarcus didn’t tell his wife or son that he was making calculations in his head: most people didn’t survive five years on dialysis. He was nearing seven. His mother had died in year eight.
No matter how much he tried to go a different way, JaMarcus was being pulled along the same course, one laid out for him at birth. Black Americans are more likely to be born to mothers with diabetes, which predisposes them to the condition. They have lower rates of insurance coverage and can’t see doctors or afford medication as regularly, so diabetes and hypertension are more likely to cause complications like kidney disease. Even clinical care can work against them; doctors estimate kidney function using a controversial formula that inflates the scores of Black patients to make them look healthier, which can delay referrals to specialists or transplant centers.
Although chronic kidney disease affects people of all races at similar rates, Black Americans are three to four times more likely than white Americans to reach kidney failure. Even at the final stages of this disease, they are less likely to get a transplant. It is one of the most glaring examples of the country’s health disparities, one that Tanjala Purnell, a Johns Hopkins epidemiologist and health equity researcher, calls “the perfect storm of everything that went wrong at every single step.”
When patients get to dialysis, they enter a system in which the corporations that stand to profit from keeping them on their machines are also the gatekeepers to getting a transplant. DaVita and Fresenius, its main competitor, control about 70% of the dialysis market. Though most patients rely on staff at these clinics, and the kidney specialists they work with, to educate them about their options and refer them to transplant centers, the federal government’s rules for how they must do so are vague and often toothless. As a result, patients can get direction that’s uneven, depending on how much individual social workers and doctors decide to help. It is a scenario ripe for neglect and the introduction of bias.
JaMarcus hadn’t managed to get on the waitlist when COVID-19 rolled in, first as a distant news story, and then as a threat in the air he was breathing. It was killing Black adults his age at nine times the rate of white ones. People with diabetes made up 40% of the dead; patients on Medicare because of kidney failure were more likely to be hospitalized than anyone else on the government program. It seemed as if the virus was coming straight for JaMarcus, but he wasn’t able to isolate. Every other day, he still needed to trek to a dialysis clinic to spend hours tethered to a machine, surrounded by strangers.
Sometimes, a cough would pierce the quiet. Or an empty chair would prompt rumors that a patient was in the hospital, though no one would confirm whether it was COVID-19. JaMarcus didn’t like to worry Gail. He was more open with his older brother DeArthur, his closest confidant. “I can’t get this shit,” JaMarcus told him. “I really can’t afford to get this.”
JaMarcus was born at 10 pounds, and by 6 months old, he looked to his sister Shirley as if he were doubling in size. Their parents raised seven kids on a single wage; a back injury had left their dad unemployed, and their mom made $3.35 an hour dipping toy parts in paint. Their family had been in Bibb, a rural county halfway between Birmingham and Tuscaloosa, since at least the 1830s, and JaMarcus grew up in a segregated neighborhood, across the train tracks from the town’s white residents. The kids believed that their mom, Mildred, was first diagnosed with diabetes while she was pregnant with JaMarcus.
Their friends and relatives didn’t talk much about the condition, and Mildred didn’t know how it gradually damaged a body, or how diet played a role. They ate greens and beans and sweet potatoes, meat, biscuits, and always syrup. Mildred only saw doctors in emergencies; she didn’t have insurance, and only two local physicians touched Black patients. When her husband was later diagnosed, she joked that she had given it to him, as if it were a cold. You don’t reckon Markie gonna catch it from me too, do you? she would say about JaMarcus. She didn’t know it then, but because she had diabetes, he was more likely to develop it.
Evidence of high diabetes rates among Black Americans had been mounting long before JaMarcus’ birth, but it had largely been ignored. For the first half of the 20th century, diabetes was considered a disease of well-to-do whiteness. And at one point, it was so firmly associated with Jews that it came to be known as the Judenkrankheit, “the Jewish disease,” which was believed to be caused by extreme nervousness, intellectual exertion, or centuries of distress from oppression. After the civil rights movement, when doctors began paying closer attention to the disease in Black neighborhoods, the public was shocked by the high numbers. Years later, in 1985, the government released the first comprehensive report on the health of racial minorities, and it found that Black Americans were 33% more likely to have diabetes than their white neighbors. “People were shocked again,” Arleen Marcia Tuchman, a historian of medicine at Vanderbilt University, told me. But no government funding was set aside to address it.
In her recent book, “Diabetes: A History of Race and Disease,” Tuchman writes that as researchers documented the high rates, what emerged was “a caricature of poor and medically indigent black diabetes patients as lacking intelligence, unable to understand anything but the simplest instructions.” After diabetes was split into two types, people with the autoimmune condition of Type 1, who were predominantly white, were perceived as upstanding citizens who religiously monitored their sugar, Tuchman writes, while those with Type 2 were seen as responsible for their disease. In the past decade, a new wave of social scientists and medical researchers have begun recasting Type 2 as a condition of poverty and discrimination, triggered by factors beyond genes and personal behavior: childhood stress, availability of fresh food, distance from doctors, money. Today, Black adults are nearly twice as likely to develop the condition as white adults. As income levels fall, the rate of diabetes rises. Alabama, JaMarcus’ home state, is among the poorest in the country. It also has the highest rate of diabetes.
JaMarcus’ siblings had commanding personalities, but he was different. “You could hurt his feelings just by looking at him mean,” DeArthur told me. JaMarcus had a stutter, and they mocked him with tongue twisters. They urged him to wrestle and play football at school, but JaMarcus favored housework — cooking and cleaning and washing clothes alongside his mom, in their wooden home across from the Baptist church. By the time he started high school, JaMarcus weighed 405 pounds and was the largest kid in his class. A boy named Jamuel Breeze was the smallest. They figured if they were both being bullied, they might as well link up.
In ninth grade, JaMarcus was playing on the defensive line in a Bibb County High School football game, crouching in his purple jersey and gold helmet, when he collapsed. Unable to stand, he was carried off the field. His coach kept repeating that he was overheated, but when his mother drove him to the emergency room, he was diagnosed with Type 2 diabetes. “It was shocking to everybody in our circle,” Jamuel told me. “We were all eating the same shit.”
The doctors scared JaMarcus when they talked about his prognosis. One Saturday night, while watching “The Golden Girls,” JaMarcus told Jamuel that he worried he might not survive until prom. He began injecting himself with insulin. He started swapping in celery and apples for junk food, salads slathered in ranch for lunch, flavored water for soda. In the afternoons, he walked the slow roads by Hospital Drive for hours. He lost more than 100 pounds but couldn’t shake his diagnosis.
Jamarcus coped by pushing himself at school. He got on the advanced track for science and math and joined extracurricular groups: Science Club, Key Club, Future Business Leaders of America. He starred in step routines with the Kappa League in the school gymnasium; he was so light on his feet that the crowd would go wild. Almost every day, he approached his only Black teacher, Earnie Cutts, to talk about college or a service project. What can we do for the old folk? he would repeat. Cutts told me: “He was always the spearhead in organizing, and he did it with a meticulousness that many students didn’t have.”
In 2002, JaMarcus moved to Montgomery to attend Auburn University on a scholarship, but he didn’t have insurance or enough cash for his medications. He had aged out of Medicaid at 18. Diabetes is manageable, but without regular healthcare, or money for nutritious food, a slow violence destroys the body. Too much sugar flows through the bloodstream, devastating vessels and attacking nearly every major organ. Nerves die and infections fester; it is the leading cause of blindness and amputations. One of the most debilitating complications is the wreckage of the kidneys, which filter waste from the blood to make urine.
DeArthur, who shared an apartment with him, began noticing that JaMarcus was losing his vision. When JaMarcus met Gail in his hometown in 2003, she joked that she could have found herself a healthier man at the nursing home. He was drawn to her wry sense of humor. By the time they had their son, Marcellus, JaMarcus was 23, and the nerves in his legs were so damaged that he often fell without warning. When he burned his fingertips lighting candles around the house, he felt nothing. Still, he kept up his coursework. In 2006, he got his bachelor’s degree in business administration, with a major in human resources management.
Back home, JaMarcus’ mom had taken a new job driving the dialysis van, ferrying patients to clinics, when she received her own diagnosis of kidney failure. JaMarcus knew that she’d need support; all of his siblings had left for bigger cities, and his dad, who suffered from chronic pain, spent weeks at a time in bed. In 2008, he and Gail decided to move back to Centreville from Montgomery. DeArthur asked him not to; he knew JaMarcus wouldn’t find a good career there. But JaMarcus was adamant: as a kid, he’d promised to care for his parents when they got sick, in the same way they had cared for him. He transferred to a job in Tuscaloosa, as a teller at Compass Bank, with health insurance he could sometimes afford. He didn’t always have the money to pay the premiums. They settled into a three-bedroom apartment across the road from his former high school.
Five years later, JaMarcus’ body began to swell. It started in his feet, then his ankles, all the way up his legs and into his stomach. He was carrying so much liquid that he could hardly walk, as if he was experiencing a flood inside him. Without insurance, he hesitated to see a doctor. In June 2013, he was struggling to breathe when he walked a few steps; it didn’t help to lie down. He took himself to the emergency room at the University of Alabama hospital in Birmingham, and at the age of 30, he was told that his kidneys were about to fail. They were no longer removing excess water from his body. Soon, he would need to start dialysis.
Inequity in kidney care has haunted the field for decades. In 1961, as dialysis machines were entering medicine, the Seattle Artificial Kidney Center established a panel of citizens to decide who should have access to the expensive, life-sustaining treatment. After physicians set medical guidelines, they turned over the decision to the seven members: a housewife, a lawyer, a minister, a surgeon, a state official, a labor leader and a banker. Their task was to determine who was worthy; they based their decisions on patients’ finances, their family size, their education, how often they attended church. Most who made it were white middle-class men. The citizen group was soon dubbed The God Committee. Several years after it was exposed in a Life magazine article, Congress took the landmark step to cover all dialysis patients with Medicare.
At the time, in 1972, only 11,000 people were receiving dialysis, and Congress estimated the number would triple over a decade. But lawmakers didn’t foresee the surge in diabetes — the leading cause of kidney failure — and the numbers began to balloon. “There was this seeming explosion of Black kidney failure that was ‘discovered,’” Richard Mizelle, an associate professor of history at the University of Houston told me, “but the truth of the matter is that many African Americans had long been suffering from chronic and deadly kidney disease.” Today, the United States has one of the highest rates of kidney failure in the world, and about a third of all dialysis patients are Black. Though access to dialysis was radically expanded, the inequity has been pushed to the final, life-saving treatment: transplantation. Donated kidneys are a precious, limited resource, and once again, Black Americans are at a disadvantage.
JaMarcus was an inquisitive patient; when Gail was pregnant, he grilled doctors on their years of experience and read aloud at night about the fetus developing skin and fingernails. For years, he had been asking doctors about his kidneys, concerned that he’d follow in his mother’s footsteps. It wasn’t until he went to the University of Alabama hospital in 2013 that he learned he even had kidney disease. But as he reviewed his old medical records, he looked into his creatinine — a waste product that indicates kidney function — and realized his doctors had seen that it was high. His primary care doctor hadn’t mentioned it. Nor had physicians at the local hospital. “Doctors knew my kidneys were in trouble,” Jamarcus said, “and they didn’t say anything.”
Because he was told so late, JaMarcus’ disease had already advanced, and he wasn’t able to stave off kidney failure. People who don’t see a specialist ahead of kidney failure miss out on drugs that can slow the progression of their disease; they have higher death rates and lower chances of getting a transplant. Black patients are 18% less likely to see a kidney specialist, called a nephrologist, more than a year before starting dialysis. “These race differences in referral for nephrology care have a huge impact on health,” Dr. Ebony Boulware, chief of general internal medicine at Duke University, told me. “The results are about seven times greater mortality.” Insurance coverage is a major driver, but not the only one, raising questions about the role of bias and other barriers in the system.
A race-adjusted equation was also at play in JaMarcus’ case. The formula calculates kidney function by looking at what’s called “estimated glomerular filtration rate,” or eGFR. Creatinine is plugged into the formula along with age, sex and race. Doctors must note whether their patient is “Black” or not. By design, the equation assigns healthier scores to those who are listed as Black, because at a population level, a few studies found that this was more precise. With little investigation into why this might be the case, it was just accepted. That inflated score can mean a longer wait for a kidney because eGFR must drop to a certain level before you can start accumulating time on the transplant waitlist. The best-case scenario is to get a new kidney before needing dialysis, to avoid weathering the side effects of the machines. But those transplants are given on a first-come, first-served basis, and Black patients are less likely to get one.
The researchers and physicians behind the original formula, developed in 1999, wrote that Black patients had higher creatinine levels because “on average, black persons have higher muscle mass than white persons.” The assertion that Black bodies are different from all other bodies keeps company with generations of racist ideas that have infiltrated medicine, some of which were used to rationalize slavery. Researchers who developed the equation acknowledge that race is an imperfect variable, but even though they have updated the formula, they continue to adjust for race. The vast majority of clinical laboratories in the United States use such formulas today.
Over the past several years, medical students have raised alarms about the practice, and recent articles in majormedicaljournals have questioned it. “It doesn’t make any sense,” Dr. Nwamaka Eneanya, a nephrologist at the University of Pennsylvania, told me. “I don’t know why we would think that being Black means that your kidney function is different. I don’t know if you have mixed race in your history. How can I use just the word ‘Black,’ one word, to dictate your care?” A number of hospitals including Beth Israel Deaconess Medical Center in Boston and University of Washington Medicine in Seattle have recently changed their practices. Nephrologists, though, are split. Those who aren’t ready to abolish it argue that removing the variable will carry its own negative consequences — for example, patients can’t get certain medicines like metformin, the cornerstone of Type 2 diabetes management, if their eGFR is too low. Some would prefer to carefully, and slowly, replace the formula with something more precise, like a marker called cystatin c, another indicator of kidney function.
In June 2013, JaMarcus’ race-adjusted eGFR was 25 — too high for the transplant waitlist. He’d need to wait until it was down to 20 before he was eligible. Dr. Vanessa Grubbs, a Black nephrologist who is one of the most vocal opponents of the race correction, had a Black patient in a similar situation. He had an eGFR of 24, which would have been 20 if he were white. Because she didn’t trust the formula, and a cystatin c test wasn’t available, she asked him if he’d be open to trying a more onerous process that most doctors don’t ask for: He would have to collect his urine for a full day and store it in a refrigerator, so she could estimate his GFR with more precision. When she had that sample tested, his GFR was calculated as 20. She referred him for a transplant.
The best treatment for kidney failure is a transplant from a living donor, but JaMarcus couldn’t ask Gail to donate a kidney; she also had diabetes. Most of his siblings did as well. Black patients have far more trouble finding relatives who can donate, because of a higher rate of disqualifying medical conditions. The disparities in living donor transplants have nearly doubled since 1995: Today, white Americans are almost four times more likely to get one.
JaMarcus wasn’t the type to ask strangers for a kidney, either, but he could see that some patients had gone public with their needs. Along the roads in Alabama, bold-colored billboards read: VERNA NEEDS A KIDNEY. MELINDA NEEDS A KIDNEY. JASON NEEDS A KIDNEY. Below the names were photos of each patient — hooked up to a dialysis machine, or hugging their children — with a phone number and a question. “Could you be the miracle I’m praying for?”
In November 2013, JaMarcus started dialysis in Tuscaloosa, a 40-minute drive away, at the same DaVita center that his mom had attended, in a small brick building behind an auto repair shop. JaMarcus’ sister Shirley had asked him to try a different clinic; she hadn’t liked how the staff had treated their mom. But JaMarcus took comfort in the familiar. DaVita was a brand he knew, a Fortune 500 company with more than 2,600 centers, which seemed to be everywhere, across from McDonald’s and Taco Bell.
Dialysis is corporate healthcare on steroids: For-profit companies dominate the market, reap their revenues from Medicare and lobby hard against government reform. DaVita and Fresenius recently spent over $100 million to fight a ballot initiative in California that would have capped their profits, much of which are derived from taxpayer dollars, arguing that the initiative would lead to a shortage of doctors. They have lower staffing ratios and higher death rates than nonprofit facilities. And studieshave found that patients at for-profit clinics are less likely to reach the transplant waiting list; they are 17% less likely to get a kidney from a deceased donor. Purnell, the Johns Hopkins epidemiologist, said the whole system is broken as long as corporate dialysis, which is financially incentivized to keep patients, is in charge of steering them to the better treatment of transplant: “Why would I walk into a Nissan dealership to tell me about a BMW?”
Dialysis facilities are responsible for transplant referrals, according to federal regulations, and JaMarcus’ DaVita social worker was assigned to educate and support him. When he was first assessed, a couple of weeks after he began, she wrote that he was suitable for referral and she would get him one when he got insurance. Jamarcus qualified for Medicare within three months. But more than a year later, he still hadn’t been referred.
By 2015, JaMarcus had a new DaVita social worker, Robbin Oswalt, who attributed the delay to a different prerequisite: “He is interested in getting a transplant referral if the Dr. approves after his wgt loss.” JaMarcus had lost 108 pounds since he started dialysis, and his body mass index had been hovering around the University of Alabama’s limit for months. At the time, he didn’t know that his height had been mistakenly entered into his DaVita records as 5-foot-11 — an inch and a half short of his actual height. Their incorrect number was then used to calculate his BMI, which made it look to his doctor that his weight was disqualifying, when it wasn’t.
JaMarcus didn’t like to step on people’s toes. He’d been raised in a family of rule-followers and thought that his social worker would make a referral when he was ready. Unlike many hospitals, the University of Alabama transplant center didn’t allow patients to refer themselves. His social worker needed to coordinate with the nephrologist, Dr. Garfield Ramdeen, who has an independent practice but is also contracted by DaVita as the medical director of the clinic. He rarely came to the center while JaMarcus was there — once a month, twice if JaMarcus was lucky. (DaVita said that someone from the physician’s office made rounds on a regular, often weekly, basis. Dr. Ramdeen did not reply to multiple requests to speak with me.) JaMarcus started to feel as if no one was paying attention. “And that’s what kept me off the list,” he told me.
Dr. Deidra Crews, a professor of medicine at Johns Hopkins (who is unrelated to JaMarcus), sees patients at Fresenius, DaVita’s main competitor, and says that delays in referral are common. “It’s not a system to move people into transplantation,” she told me. “Reminders would be helpful, protocolizing it so every month social workers are checking in on transplant.” (A Fresenius spokesperson wrote that it has “monthly progress reports” and is “piloting several new technologies’’ to streamline referrals and to better manage patients on the waitlist.) Even DaVita recognized that this was a gap when I asked about it. There are few systemwide rules, and each center has its own practices.
DaVita said that staying on the path to a transplant is a shared responsibility between the doctor, the patient, the transplant center, and the dialysis care team.“We want all patients – regardless of their age, race, health conditions or insurance status – to have access to transplantation, which we believe is the best treatment option for people with kidney failure.” The company wrote that the ultimate decision to pursue a transplant happens between a doctor and a patient. The Centers for Medicare and Medicaid Services note that referrals are a dialysis “facility-level responsibility.”
When JaMarcus’ nephrologist finally referred him to the University of Alabama transplant program, in early 2015, his weight had risen. He explained to Oswalt, his DaVita social worker, that he’d understood from staff at the transplant center that he was a bit too heavy. Oswalt noted this in his chart. She didn’t suggest that he try the center at Vanderbilt University, three hours away, which accepted patients at higher weights. It’s unclear if she even knew it. DaVita did not mandate her to supply that kind of help.
As the routine became more permanent, JaMarcus privately mourned the collapse of his career. At the bank, he’d been hoping for a promotion to loan officer, and recently, he’d been applying for jobs in human resources. But the only work he could find that tolerated his dialysis schedule was a part-time position as a cashier at Dollar Tree. JaMarcus cancelled cable. Instead, he bought bootleg DVDs and the family pretended their home was a theater, microwaving big bowls of popcorn and bragging about it to friends. When Gail’s teenage niece asked to move in, he started parenting her as if she were his daughter. He kept up appearances, still dressing them all in matching clothes: blue sneakers for the men in the family, identical purple button-downs, pink for everyone on special occasions. He committed himself at church, as the treasurer and resident decorator, singing with Gail in the choir.
Low on cash, JaMarcus moved his family from their tidy apartment to his childhood home, with rotting floors, no heat and holes in the windows. He borrowed $50 here and there from family to help cover the gas to get to DaVita, 30 miles away. When he tired of asking, Gail pawned three gold rings, gifts from her father and godmother. “I knew if I didn’t do anything, he wouldn’t be able to get to and from,” Gail told me.
JaMarcus put up a front as he lost control of his body, which was retrofitted to be plugged into the machines. He laughed if blood spontaneously rushed from the port in his neck. When doctors joined a vein and artery in his left forearm, creating a fistula to withstand the needlesticks, he joked about the sight of it, bulging and gnarled. “Feel this! Touch it!” he would say, running his fingers over the blood he felt thrilling beneath his skin. As a young boy, Marcellus mimicked his humor. He knew his father could no longer urinate, and he’d stand over the toilet to tease, “Look dad, I can pee!”
But as dialysis wore on JaMarcus’ body, Marcellus began to worry. At the age of 10, he Googled his dad’s condition. He read about how his father needed dialysis to live, but how it might damage his heart and how he could die. He didn’t want to pry, so he watched most mornings as JaMarcus vomited up the fluid that his body could no longer handle. In silence, they’d get in the car and drive to school.
When JaMarcus began seeing a nutritionist, in 2019, he said that he wanted a transplant because of Marcellus, whom he called his “mini-me.” His son was approaching the same age he was when he was first diagnosed with diabetes. JaMarcus told the nutritionist that he worried Marcellus was “headed down the same road.” Each month, JaMarcus used his glucometer to check his son’s sugar levels. He taught Marcellus to watch his weight and brought him along to walk the track.
JaMarcus no longer needed a doctor’s endorsement to get a referral for a transplant; a year earlier, DaVita had changed its rules to allow patients to ask for a referral when they wanted one, regardless of whether their physician thought they were a good candidate. The company made the decision in order to remove the influence of implicit bias. JaMarcus had been waiting until he could bring his BMI of 36 down to 35, which is what he’d been told he needed to hit in order to qualify. But the University of Alabama transplant program had raised its body mass index limit to 40 back in 2015. The hospital didn’t publicize its new standards on its website, and no one at DaVita had told him. For years, he’d been eligible.
When I mentioned my confusion about this to DaVita, a spokesperson replied that their social workers aren’t transplant coordinators but transplant advocates. When I asked why they didn’t provide basic facts on the requirements at nearby hospitals, DaVita replied in an email that the responsibility to update patients on criteria falls to transplant centers. Years ago, DaVita tried to argue against federal regulations that require dialysis care teams to assess patients based on the criteria at the prospective transplant center, claimingthat this was “beyond the reasonable scope of practice” for most of its staff. The Centers for Medicare and Medicaid Services, though, explains in its guidelines that “if the dialysis facility refers patients to multiple transplant centers, the dialysis facility should have the selection criteria for each center on file and available to patients.”
Over time, the setbacks eroded JaMarcus’ optimism. He’d tried pursuing a master’s in education through the University of Phoenix, but he couldn’t afford the tuition. He would watch what he ate and take long walks, only to fall behind on his medication and binge on sleeves of fun-size chocolate bars. Sometimes, he’d call DeArthur just to vent: I don’t understand. What did I do? What did I not do? JaMarcus had always been slow to anger, but DeArthur noticed he was developing a temper. Occasionally, he cussed DeArthur out, hung up, and called back to apologize.
This March, JaMarcus got the news he’d long been waiting for: he was being referred to the University of Alabama transplant center. Under normal circumstances, staff at the center would have contacted him within two days. He would have had an appointment at the clinic in Birmingham within a month, and spent the following weeks getting tests with his doctors: an echocardiogram, a stress test, a CT scan. He expected that he would then be approved for the waitlist. If he could get on it, his time would be backdated to when he started dialysis in 2013, and he’d be near the top of the list. Chances were good that he could get a transplant within a year.
Like everyone this spring, his plans were interrupted by the coronavirus. First, Marcellus’ middle school shut down in the middle of March. JaMarcus and Gail drove to Sam’s Club to stock up on toilet paper and sanitizer and water. Then, Gov. Kay Ivey issued a statement on the state’s first confirmed case. “Alabamians should not be fearful,” she said. “Alabamians are smart and savvy, and I know they will continue taking appropriate precautions.” Two weeks later, word started to get around about the first person in town who’d contracted the virus. At 58 years old, he’d been placed on life support.
JaMarcus recognized that his immune system, weakened by diabetes and kidney disease, was no good at protecting him. So he took a leave from his new job, on the check-out line at Target, retiring his red shirt. Since Gail couldn’t drive, JaMarcus masked up to buy groceries. Each time he arrived back home, he left the plastic bags on the porch, threw his clothes in the washer and soaped himself down in the shower. Gail trailed him through the house with Microban, spraying the knobs and light switches.
Every once in a while, strange symptoms set in, and he wondered if the virus had caught him. In April, just before his 37th birthday, his ears started ringing and aching, and he ran a low fever. The local hospital denied him a COVID-19 test but told him to self-quarantine. He moved into Marcellus’ bedroom, where his son would leave him ramen at the door. When he called his dialysis clinic, staff said to come in to his normal shift with a mask, like everyone else. (DaVita told me that, for the most part, they treat patients with suspected COVID-19 in different facilities or on different shifts from the general population.) In May, the earache came back stronger, this time with a cough. He got a COVID-19 test and it came back negative.
That month, JaMarcus decided to put his goal of a transplant before his worries about the coronavirus. He switched from morning dialysis to night sessions, because he wanted a full-time day job with insurance. Anyone on Medicare because of kidney failure loses that coverage three years after a transplant, so patients need private insurance for the lifelong medicines that follow the surgery. (The U.S. House of Representatives passed a bill last week to cover these immunosuppressive drugs; the Senate is expected to vote on it soon.) Night dialysis meant attending a new clinic, which held seven-hour sessions in the evenings. Gail hated the routine and its risks, but she slowly acclimated. When JaMarcus got home around 2 a.m., before he lay down to sleep, he would reach by their wrought-iron bedpost and gently squeeze her toes.
On a warm night a few weeks into JaMarcus’ new regimen, a man known as Big Eric started shivering in his chair. While JaMarcus and the others remained hooked to their machines, an ambulance arrived and rushed Eric to the hospital, where he tested positive for COVID-19. JaMarcus knew several people in town who’d been admitted with the virus and had made it out alive. Then he learned that Eric was dead.
Black Americans were dying of COVID-19 at nearly three times the rate of white Americans. For anyone familiar with the disparities that have long plagued health care, this was not surprising. But once again, headlines heralded the “shocking” and “alarming” figures. Jobs, housing and testing all played their parts, but it was impossible to ignore how conditions like kidney failure, and its leading causes of diabetes and hypertension, were already distributed across the country, making certain Americans particularly vulnerable. Far too many of these patients had already been left behind by a health system never set up to care for them.
Despite all of the research on racial disparities in transplants, the government has been slow to implement reforms. The Centers for Medicare and Medicaid Services requires dialysis centers to “inform” their patients about transplant options, but it hasn’t standardized exactly what they need to communicate. One study out of Georgia found that the transplant referral rates in the first year of dialysis ranged from 0% to 75% among clinics, and the variability could not be attributed to measured differences among patients. The government hasn’t tracked or publicized referral rates at different centers, or set up penalties for those on the low end.
Last year, President Donald Trump signed an executive order to improve kidney care, in which he proposed changing Medicare payments to incentivize more transplants. The order did not include measures to ensure that patients were equitably referred, evaluated and waitlisted for transplant. Many kidney researchers were left wondering when the federal government would prioritize equal access. This summer, physicians and advocates took one step to address fairness in clinical formulas. The National Kidney Foundation and the American Society of Nephrology formed a task force to assess the race-correction equations. They wrote that “race is a social, not a biological construct,” and that they “are committed to ensuring that racial bias does not affect the diagnosis and subsequent treatment of kidney diseases.” They expect to announce an update later this month.
When I spoke with JaMarcus in early June, I could hear the frustration in his voice. “If I were on the donor list, I would have received a kidney by now,” he told me. He was livid that the process had been this difficult to navigate, and he was worried about his friends in dialysis, many of whom didn’t have a high school education. He had a degree in business — he had nearly completed a Master’s, he repeated — and still, it seemed as if his doctors, his social worker, his clinic, the entire system, was working against him.
It wasn’t until July that things started looking up. In his night clinic, JaMarcus had a new social worker, Candice Morrow, who was helping him apply for financial aid to cover gas money, and his care team was following up on his referral. Morrow left him handwritten notes about her progress. “Just didn’t want you to think I forgot about you,” she signed off. The surgical director of the kidney transplant program at the University of Alabama told me that the first record they have of a referral this year was not in March, but on July 9. “Not all good candidates get to the transplant center,” Dr. Michael Hanaway said. “This is an inefficient system that does not serve patients well. Many, many patients get left behind.”
To Hanaway, JaMarcus looked like a good candidate: young, otherwise healthy, with a fine BMI. He had made it down to 258 pounds that summer, earning him the nickname Slim Shady. It seemed like everything he had done over the past several years had primed him to get on the list. After he got an angiogram, he even learned that he didn’t have coronary artery disease. “I got a heart like a teenager!” he gloated to Gail, when he got home from the cardiologist. “Baby, I can do it all.”
When his ears began ringing again in July, JaMarcus didn’t think much of it. There was a whistle in his breath, and he’d lost his appetite, but it seemed like a simple cold. On July 14, he called in sick to dialysis. But two days later, when he stood up to drive to his next session, it felt to him as if the room was spinning. When he made it to the front door, he announced that everything looked blurry. Confused, Gail called DeArthur, who drove up from Montgomery and took his brother to the hospital.
With too little oxygen in his blood, JaMarcus was admitted to the intensive care unit at DCH Regional Medical Center, where he lay facing a shaded window and a wall-mounted clock. He alternated between an oxygen tube and a BiPAP, a kind of air mask, to breathe. After his lab work and chest X-ray came back, he was diagnosed with sepsis, respiratory failure and pneumonia. Then his test came back positive for COVID-19.
When his relatives texted him, JaMarcus shot back casually. “Thanks for checking on me,” he wrote to his nephew, “I’m doing fine just got to get better tho.” Marcellus texted: “Mommy don’t want to talk…. are u ok… u want to call me and talk or what.” JaMarcus replied: “Doing well son.” His younger brother teased, “How ya feeling boi? You gotta give me at least 10 to 15 more years before you can kick tha bucket…” JaMarcus wrote: “I’m trying not too.”
Gail spoke with him every night, until 1 or 2 in the morning. She sang gospel songs in her strong alto, and she prayed aloud. JaMarcus had always thought that her prayers reached God quicker than his. And he didn’t want to let his body drift from consciousness. “He would never want to hang up,” Gail told me. “He just wanted me to be on the phone.”
On July 29, the doctors started talking about putting JaMarcus on a ventilator. Gail asked him, “Is there anybody else that you want to talk to before they put you on the machine?”
JaMarcus said: “I’m talking to her now.”
Gail didn’t dare say it, but she couldn’t stop thinking about a text she’d received from him earlier. All he had written was: “I’m so scared.”
On Aug. 8, dozens of young families in masks gathered in the yard of Present Truth Church, facing a powder blue casket with silver hasps. There, JaMarcus lay with his arms by his sides, in a white suit and baby blue tie. Under a hot sun, several women in face shields and gloves sang worship songs as Marcellus fanned his mother with a funeral program. After the poetry and the prayers, a caravan of cars drove past JaMarcus’ childhood home, his elementary school, the church where he was married, to a cemetery, tucked into a forest, where his parents were buried.
JaMarcus died on July 31 at 7:29 a.m. The hospital had allowed Marcellus and Gail to say goodbye, and in the fluorescent light, they had stood beside his bed. Marcellus wrapped his hand around his father’s finger, which was warm. JaMarcus coded once, then twice, and he was gone.
At first, Marcellus didn’t know how to feel. He told me that it was like genjutsu, a concept he’d learned from a Japanese anime series, in which a victim’s senses have been disrupted, and he moves through an illusion of a world that is not real. Hours after JaMarcus died, Marcellus texted his dad: “Wassup.” When he realized that his father wasn’t coming back, he wrote to him for guidance: “If u can some way can u replied back to me to see are u ok please dad.”
In the weeks after, Gail rarely moved from her bed. She cried, she played Wheel of Fortune on her phone, she put herself to sleep with melatonin. She punished herself daily by scrolling to a photo she’d taken of JaMarcus in his coffin. Sometimes, Gail got angry about all he had been through at dialysis. At other times, she was grateful that he didn’t have to suffer it any longer.
When I brought details of JaMarcus’ care to DaVita, they told me that there was no record of him or his family filing a complaint or sharing negative feedback. “The transplant system is complex, and it’s difficult to hear about experiences like JaMarcus’, who didn’t make it onto the transplant center’s waitlist even after his physician referred him several times. JaMarcus was a beloved patient we supported for many years. Our hearts are with his loved ones, and our care team is grieving his loss. Alongside the entire kidney care community, we will continue to advocate for transplant and actively push for progress to the system.”
I visited Gail and Marcellus in September, and most days, we sat in their dark living room. Gail curled into her favorite recliner, surrounded by reminders. Fake white roses that JaMarcus had coiled into a bouquet. Framed photos of Gail, with the note, You’re still the one. She hadn’t let Marcellus return to school, and she was still scared to go outside.
One Friday night, Gail was trying to get some clarity on all the bills, which kept arriving in her mailbox. JaMarcus, like all dialysis patients, didn’t qualify for a traditional life insurance policy, and Gail didn’t have a job. She was sorting through the mail as we talked. Amid the junk sat a University of Alabama Medicine envelope. She picked it up and read it silently: “The UAB Transplant office has received a referral for transplant evaluation from your local nephrologist,” it began. The transplant center was writing to schedule an appointment.
Gail leaned her cheek on the headrest. “Lord have mercy,” she said. Tears dripped out of the corners of her eyes. She let her mind imagine JaMarcus celebrating: “Gail, Gail! Can you believe it?” She pictured him shouting. “I’m getting a transplant.”
Lizzie Presser covers health, inequality and how policy is experienced at ProPublica.
Arizona's Independent Oversight Committees helped it become one of the best places in the country for the care of people with developmental and intellectual disabilities. But now members say the state hasn't provided necessary resources.
This article was published on Saturday, December 12, 2020 in ProPublica.
More than 40 years ago, Arizona set up a revolutionary system to protect the safety of residents with developmental disabilities like Down syndrome, autism and cerebral palsy.
The state created panels of volunteers — family members, nurses, disability advocates — in different regions to oversee the agency charged with the care of those with developmental disabilities.
The volunteers visited group homes, advocated for new programs and reviewed reports of possible abuse. They helped Arizona earn its reputation as one of the best states in the country for the care of people with developmental and intellectual disabilities.
But today, the Independent Oversight Committees are falling apart, with members accusing the state Division of Developmental Disabilities, or DDD, of neglecting to provide the information and resources they need to do their job, according to interviews, official documents and a review of confidential incident reports by the Arizona Daily Star and ProPublica.
Four committee members — including several long-serving leaders — have resigned during the past year. Several others interviewed by the news organizations report they are considering doing so. Some of the panels are barely functioning because not enough people show up for meetings.
Nearly all of the 20 committee members interviewed — a group that includes representatives from each of the state’s six regional committees — expressed frustration with the agency. They said that DDD officials do not regularly attend meetings to answer questions. Abuse reports arrive months or even years after the incidents occurred, preventing timely interventions. Suggestions for improvements are ignored.
The new findings follow an investigation by the news organizations this year that found that DDD was failing some of the state’s most vulnerable residents as a result of budget cuts, poor management and leadership turnover.
This fall, Cynthia McKinnon, a nurse who served for 30 years on the committee that covers the northern part of the state, turned in her resignation after her committee hadn’t received any incident reports in more than five months.
“The decades during which I worked advocating for medical care, for justice, for education, for inclusion, for HUMAN rights for a population with no voice and for group homes that assisted members to become independent are lost,” McKinnon wrote in her resignation letter. The independent oversight committees seem to be “an afterthought as the system has failed to provide the basic requirements to perform oversight.”
In response to detailed questions, DDD officials described their efforts to assist committee members. They said that reports are provided with redactions required by state law and that committee members can request visits to institutional sites if they disclose their intent to DDD officials before visiting.
The agency acknowledged that one committee in northern Arizona was not functioning because of a lack of members. The statement described how one DDD employee travels throughout the state to recruit members to the boards by providing flyers and brochures at schools and community groups.
“As with any group, finding qualified individuals willing to commit the time to the organization can be challenging,” the agency wrote.
The agency did not respond to specific questions about individual cases. In a statement, agency officials said the division treats people with developmental disabilities “with respect and the utmost care.”
“Our staff are truly committed to the individuals we serve, and we will continue to improve our programs to ensure all members receive the highest quality of care and assistance,” the statement read. “Member safety is our top priority, and we do our due diligence when an incident occurs to ensure members remain safe and comfortable while continuing to receive the care they need.”
“Spinning Our Wheels”
The committee members’ most important job is also their most difficult: reviewing confidential incident reports that catalog the dangers faced by Arizonans with developmental disabilities.
DDD officials, workers at state-funded group homes, providers of in-home care and people who work with the disabled community are required to file reports about potential health and safety concerns involving people with developmental disabilities. Each year, tens of thousands of reports are generated, documenting everything from spats between roommates to bedbugs to sexual assaults and deaths.
The division can address problems raised in the reports by requiring more training, requesting the dismissal of health care company employees and threatening to rescind provider contracts. For the most serious incidents, the agency works with the state’s Adult Protective Services, which can investigate and recommend criminal prosecution.
The committees are designed to act as a safety net to make sure that state agencies are properly responding to complaints. Committee members are supposed to be independent of state control; each committee appoints its own members when slots open up.
It’s not unusual for a committee member to spend 10 hours a month reading hundreds of reports. Committee members are supposed to flag possible human rights violations and question the way the state conducts investigations and resolves complaints. But that task has become more difficult in recent years.
Committee members used to receive full copies of the reports. But in 2013, as a result of state and federal privacy rules, the division began to strip out details. Among other information, the division now withholds the names of individuals, their disabilities and the locations of the incidents.
So much information is redacted from reports that it is difficult to understand what actually happened, said Karen Van Epps, who chairs the oversight committee that covers much of metropolitan Phoenix. She said that DDD often ignores requests for additional details.
“It seems sometimes like we’re spinning our wheels,” she said.
Committee members from across the state said DDD was slow in delivering reports to them for review.
One recent report reviewed by the Star and ProPublica indicated that a woman living at home fractured her shoulder. Family members said they didn’t know how it happened. The case was closed. The committee received the report almost two years after the state learned of the incident, making it difficult to take action.
A different woman living in a group home showed up to a day program with a bruise under her eye. There was no explanation in the group home’s logbook as to how it happened. Committee members did not get an incident report until six months after the incident took place.
In other cases, committee members said that DDD ignored requests for additional information about incidents they had flagged for further review.
DDD delivered several incident reports to committee members this spring indicating that group home employees were being told to come to work with fevers — and not tested for COVID-19 — because facilities were short staffed.
The division did not respond to committee members who raised concerns over the incidents. At the bottom of one incident report provided by DDD to the committee, a member wrote, “Pushed back for more info. ... It never came.”
Committee members said that DDD also does not appear to be addressing systemic problems.
In one recent case, a health aide working for a private company under contract with the state had sex with a person with a developmental disability. DDD determined it was consensual and no action was needed. The company later fired the person.
Bernadine Henderson, who sits on the committee serving western Arizona, said the incident reflected a broader pattern. The employee can now find a job with another company. It’s a common occurrence that the agency has failed to address.
“We’ve expressed a lot of concern about someone being fired from one agency and going to another,” she said.
DDD officials said they could not act against health care workers without a finding of wrongdoing by the courts or the state’s Adult Protective Services agency. They said responsibility rests with the health care provider.
“The new employer would need to perform their due diligence in background and reference checks before hiring to ensure members are served by the most qualified and caring employees.”
Diedra Freedman, a retired attorney and parent of a child with autism who heads the committee that covers the western part of the state, said the division was failing its responsibilities.
“When I look at these incident reports, [DDD is] not walking the talk. These people are not being treated like human beings,” she said.
The Beginnings
The committees arose as part of the settlement of a 1977 class-action lawsuit against the state that alleged horrific living conditions for residents of the Arizona Training Program, an institution on the outskirts of Coolidge, a town located between Phoenix and Tucson.
At the time, the Arizona Republic described the Coolidge facility, which then housed twice the number of people it was designed to hold, as “a wasteland.”
“The tumbledown buildings echoed with hostile shouts of pain and confusion. There were dressers without drawers, beds without blankets, sofas without cushions and restrooms without toilet paper. Residents were often drugged, locked in padded rooms or tied to their beds,” according to the newspaper.
Van Epps recalled being named to one of the original committees. At the time, she had just become co-guardian of her sister, Janie, who has Down syndrome. Janie is now 71 and living near Casa Grande with a family paid to provide her care. Van Epps is proud that her family never put her sister in an impersonal institution.
“That was one of the ways you could get a voice,” she said of what were then called Human Rights Committees. “I’d sort of been crabby about stuff and nobody listened to me.”
Oversight was initially focused on a few larger facilities, but as more people placed loved ones in smaller community settings, the focus turned to group homes all over the state.
In the beginning, Van Epps recalled, committee members were given ID tags and allowed to make site visits.
“One of the first things we’d do is pull the covers back to see if there were sheets on the bed. I can’t tell you how many times there weren’t,” she said. “We really did have a good idea of what was happening.”
The committees were given the undivided attention of leadership at DDD, Van Epps said.
“Compared to now we were awesome.”
In an interview, McKinnon recalled that committees in the early days often focused on health care, which wasn’t always available to people with developmental disabilities.
She urged DDD officials to offer specialized care for women. She advocated for bone density tests for people with developmental disabilities who use wheelchairs, rather than waiting “until their bones start breaking every time you move them.”
McKinnon said DDD officials used to routinely attend meetings to listen to the concerns of people with developmental disabilities.
“There was a time staff and [people with developmental disabilities served by DDD] attended the meetings so that members could express their thoughts about their lives, living situation and day programs.”
Over the past decade, budget cuts and leadership changes — there have been six directors of DDD in the past six years — weakened the power of the committees, according to both McKinnon and Van Epps.
Nancy Barto, a Republican legislator, has long supported the work of the oversight committees. She successfully shepherded a bill through the Legislature that attempted to insulate the committees from interference by moving them into another state agency.
“We have work to do to properly get that independent oversight throughout the state,” Barto said.
Resignations
Others have given up on the committees.
Since January, at least three committee members along with McKinnon have resigned, including Lynda Stites, who chaired the Tucson-based committee covering the southern portion of the state for several years.
Cynthia Elliott, who served on the committee serving eastern Arizona, quit this fall.
She had hoped that serving on the committee would give her insight into the care received by her daughter, Zainab Edwards, who is deaf, has autoimmune encephalitis and suffers from seizures. Instead, she just found the experience exasperating.
During her time on the committee, Elliott voiced concerns about a person living in a group home who was having significant behavior problems. She learned by reviewing the records that the person was deaf. The person was not being taught American Sign Language, nor did the person have access to an interpreter. Elliott’s committee reported it to DDD as a possible human rights violation. A year later, she had heard nothing back from the agency.
“It’s not what I thought it would be and it ended up not being in any way effective,” she said.
Several more committee members from different regions said they are considering resigning, placing more pressure on the struggling system. Since August 2018, some committees have had as many as eight monthly meetings canceled, usually because they did not have a quorum.
Committee members from across the state said their questions are often never answered.
“For all the hoopla about how invested we are in our vulnerable population, it’s a waste of time,” Elliott said.
“Damaged Beyond Repair”
Being part of the oversight system was personal for Ted Garland.
Garland, who lived in Flagstaff and worked at Northern Arizona University, had cerebral palsy. He served on the oversight committee for the northern part of Arizona off and on for about 10 years — having first learned of the committees after McKinnon helped him with a difficult living situation.
Garland loved social activities like belonging to Toastmasters International, a nonprofit that promotes public speaking skills. Membership on the oversight committee was a natural fit, but DDD didn’t make it easy for him.
He had repeatedly expressed concern about accessibility issues, according to several members, and found it challenging to find a ride across town each month. He asked to attend the meetings virtually and, according to the minutes from the Nov. 21, 2019, meeting, “suggested a technology called Zoom.”
Dani Lawrence, a committee member who recently resigned, said she was upset when division staff appeared to not take Garland’s suggestion seriously.
“Staff scoffed at the idea stating it wasn’t secure technologically — although it’s now perfectly acceptable, in a pandemic, to have had nine months of virtual open public meetings,” Lawrence wrote in her resignation letter.
When the committee went ahead and voted for Garland to be co-chair, “the state liaison staff indicated the member was too disabled for the travel involved in state meetings and therefore couldn’t be the chair of the committee,” Lawrence wrote.
DDD did not respond to questions about Garland but said, “Recognizing how large some of the districts in Arizona are, [committee] members are able to participate in meetings virtually.”
Ultimately, it didn’t matter. Garland died unexpectedly of a heart attack 10 days later.
Lawrence was livid.
“The system of review is damaged beyond repair, which tells me as a committee member that maybe the state of AZ doesn’t actually want the outside review,” she wrote. “For me it’s made me feel like committee service is a farce, for optics only and a waste for families that needed the oversight for their loved ones.”
We reported how Memphis’ largest hospital system sued thousands of poor patients. Now, new data shared with Sen. Chuck Grassley shows the system collected $169 million in past-due bills, but only 1% received financial assistance during collections.
This article was published on Friday, December 4, 2020 in ProPublica.
Memphis’ largest health care system almost never gave patients discounts based on their income even as it pursued thousands for overdue bills in the last several years, according to new information released this week.
Since 2014, Methodist Le Bonheur Healthcare, a nonprofit, collected just over $169 million from more than 977,000 patients with bills at least 30 days past due, but only 1% of those received financial assistance during the collections process, the hospital reported in a lengthy response to a query from Sen. Charles Grassley, R-Iowa, who chairs the Senate Finance Committee.
The hospital also disclosed that employees at its now-shuttered collection agency were given financial incentives based on the money they recouped from patients. Workers received a 10.75% commission on amounts collected over $30,000 per month, the hospital’s response said.
In a letter Grassley sent Wednesday to the Senate Finance and Judiciary committees, he noted that the health care industry has protested that the tax code that guides tax-exempt hospitals’ charity care and collection practices, Section 501(r), is too strict.
But his inquiry into the billing practices of Methodist and the University of Virginia Medical Center, which was the subject of a similar investigation last year by Kaiser Health News, “unfortunately has shown that, if anything, the requirements of 501(r) need to be strengthened rather than softened.”
He noted that Methodist and UVA are far from the only two hospitals that have engaged “in billing and debt-collection practices that defy the spirit” of the tax code.
“There seems to be a pattern: questionable behavior leads to negative press attention; negative press attention leads to more desirable behavior.
“That may create some good outcomes but it is an unsustainable way to ensure a distinction between for-profit and non-profit hospitals,” Grassley wrote. Tax rules “should make clearer what non-profit hospitals must do for low-income patients in order to maintain their tax-exempt statuses.”
Grassley’s focus on the nonprofit hospitals comes as the COVID-19 pandemic ravages the country and is straining hospitals nationwide, including in his home state of Iowa. Grassley himself tested positive for COVID-19 recently and completed a quarantine before returning to the Capitol. But the senator said as life returns to normal with the anticipated approval of vaccines, Congress must renew its efforts to rein in nonprofit hospitals.
Neither Methodist nor UVA responded to requests for comment.
In his letter to Grassley, Methodist CEO and president Dr. Michael Ugwueke told the senator, “We share your commitment to those who are underserved because providing health care for everyone — regardless of their ability to pay — is essential to our Methodist heritage and mission.”
UVA’s interim CEO, Dr. Chris Ghaemmaghami, wrote in a November 2019 letter to Grassley that when the hospital fell short of its standard to “treat all patients with fairness, dignity and compassion,” it would acknowledge its mistakes and do better, as it believes it has done with its changes to its billings and collections practices.
In June 2019, MLK50 and ProPublica reported that Methodist sued more than 8,300 patients between 2014 and 2018, many of whom are low-income and could not afford their hospital bills. After winning a judgment, Methodist would then try to garnish the defendant’s paycheck, even when the defendant made very little money. Not infrequently, the defendant would also be a Methodist employee.
In response to the MLK50-ProPublica articles, Methodist dropped thousands of lawsuits against patients and has only filed two additional lawsuits for unpaid hospital bills since July 2019. It also erased at least $11.9 million owed by more than 5,300 defendants and announced that it would no longer sue its own employees.
Methodist’s reforms stretched into the hospital’s charity care policies as well: Patients whose household income falls below 250% of the federal poverty guidelines — or just over $64,300 for a family of four — now qualify for a 100% write off of hospital bills. The prior threshold was 125% of the federal poverty guidelines.
Under its new policies, the hospital also will not file suit against any patient in households that earn less than 250% of the federal poverty guidelines, regardless of their insurance status.
The IRS requires tax-exempt hospitals such as Methodist to provide charity care, but it does not dictate how generous that care must be. The tax code sets guidelines around what it calls extraordinary collection actions, which include lawsuits, garnishments and liens for unpaid hospital bills. The IRS has not accused Methodist of violating those guidelines, but an MLK50 reporter found that the hospital had not posted its charity care guidelines in public places as required. (The hospital subsequently posted its guidelines.)
In earlier statements, Methodist stressed that it provided $226 million in “community benefits” annually but it had declined to tell MLK50 and ProPublica how much of that went to charity care. The documents released by Grassley show the specifics: In 2018, about $96.4 million, or 42%, of the total $228 million net community benefit was discounted or free care to indigent patients.
Following news reports of their aggressive debt collection practices, Methodist and the University of Virginia Medical Center were grilled by Grassley in separate letters last year. The hospitals’ responses and copious attachments filled more than 950 pages.
Methodist’s answers, released by the senator on Wednesday, provide an inside look at the hospital’s collection procedures, and the attached documents include previously unrevealed guidelines that detail, step by step, how it determined whether a patient should be sued for an overdue bill.
The hospital said it relied on “reputable third-party data aggregators” to determine whether a patient’s household income was below its threshold for filing suit.
It’s unclear, and the senator did not ask, whether Methodist had used those aggregators in the past and, if so, why they did not find so many patients whose incomes fell below the threshold for charity care.
If it had, the hospital would have seen that grocery clerk Carrie Barrett’s income in 2018 was $13,800, which should have enabled her to get a 100% discount on hospital charges. The hospital had sued her in 2010 for an unpaid bill, and by 2019, with interest and attorney’s fees, her debt had ballooned to $33,000. (After the articles were published, Methodist erased Barrett’s debt.)
In October, Grassley followed up with both hospitals to ask about the pandemic’s impact on their operations.
Methodist said that this spring, it cut back on elective procedures, causing the number of patients it treated to drop by more than 40%. The pandemic has cost the hospital $28 million that was not made up by state or federal assistance, leading it to furlough some employees and cut back workers’ paid time off, it said.
In an email to Methodist employees Tuesday, Ugwueke captured the human toll of the virus; more than 200 employees were out with COVID-19 or were being referred for testing.
“With staffing shortages and increasing patient volumes contributing to our capacity issues, we need to do our best to keep ourselves healthy so we are able to continue to provide the best possible care for our patients,” he wrote.
“I’ve spoken with a number of you who are working tirelessly on the frontlines day in and day out to care for our patients. ... Your dedication does not go unnoticed. We will get through the hard times because of each of you.”