Five New York state and local government agencies agreed to fix COVID-19 vaccine websites to make them accessible for blind users following a Department of Justice investigation spurred by a KHN story.
New York State's Department of Health, the City of New York's Department of Health, New York City Health and Hospitals Corp., Nassau County and Suffolk County entered into written agreements with the U.S. Attorney's Office for the Eastern District of New York, saying they have corrected issues that prevent blind or visually impaired users from accessing forms or navigating vaccine websites. In the agreements announced Tuesday, they pledged to maintain accessibility on those sites.
KHN's February investigation detailed how COVID vaccination registration and information websites at the federal, state and local levels violated disability rights laws and hindered the ability of blind people to sign up for the potentially lifesaving vaccines.
The investigation was cited in a March letter sent to the Departments of Justice and Health and Human Services from several senators, including Sen. Maggie Hassan (D-N.H.), who also asked HHS and Centers for Disease Control and Prevention leadership about the issue in a congressional hearing. The Department of Justice issued a memo the next month highlighting that "civil rights protections and responsibilities still apply" for those with vision disabilities, and HHS did as well.
In response to the KHN investigation, the Department of Justice reached out to WebAIM, according to the group's associate director, Jared Smith. WebAIM, a nonprofit web accessibility organization, ran an analysis at KHN's request that found accessibility issues on nearly all 50 states' vaccine websites, which provide general vaccine information, lists of vaccine providers and registration forms. WebAIM then helped the U.S. attorney's office in its investigation, Smith said.
Clark Rachfal, director of advocacy for the American Council of the Blind, said the public agreements are vital as they put "other jurisdictions on notice that this is a violation of the civil rights of people with disabilities."
Sachin Dev Pavithran, executive director of the U.S. Access Board, an independent agency of the federal government that works to increase accessibility, said he knew the department had investigations in progress in other states.
Inaccessibility for government websites is unlawful under the Rehabilitation Act of 1973 and the 1990 Americans with Disabilities Act, said Albert Elia, a blind attorney who works with the San Francisco-based TRE Legal Practice on accessibility cases.
He hopes the pandemic has shown just how vital online accessibility can be as so many people shifted to ordering their groceries, clothes and even medicine online.
"The notion that it's fine if online things are inaccessible — I hope we're beyond that now," he said. "I hope the general public realizes that to cut people out of online access is effectively cutting them out of life."
The National Federation of the Blind settled this summer with Curative, a startup that has administered COVID vaccines and tests in cities across the country. Curative admitted no wrongdoing but agreed to make its website accessible within 30 days and pay NFB's attorney fees, plus donate $2,500.
One blind California resident, Byran Bashin, who was unable to use Curative to register for his vaccine appointment online, was featured in the KHN investigation. "We hear a lot of lip service about inclusion and respect for diversity," he said Thursday. "Respect for our diversity begins with intelligently designing these processes."
Andy Imparato, a member of the White House's COVID-19 Health Equity Task Force and executive director of Disability Rights California, said he expects a report on inequities from the task force to be given to President Joe Biden within the month. He said the report will likely call for an outside evaluation of access issues in the COVID response, including website accessibility.
"The story that published had an impact across the country," Imparato said. "It was very specific, it was very detailed, and it was hard to ignore. I think it was incredibly helpful."
The National Federation of the Blind is pushing for a legislative fix to codify online accessibility rights, but Rachfal said a fix can be done without Congress.
"What's needed is some leadership from the administration and the Department of Justice to promulgate regulations that they already have the authority to do," Rachfal said.
Many transplant programs have chosen to either bar patients who refuse to take the COVID vaccines from receiving transplants, or give them lower priority on waitlists.
This article was published on Friday, October 8, 2021 in Kaiser Health News.
A Colorado kidney transplant candidate who was bumped to inactive status for failing to get a COVID-19 vaccine has become the most public example of an argument roiling the nation's more than 250 organ transplant centers.
Across the country, growing numbers of transplant programs have chosen to either bar patients who refuse to take the widely available COVID vaccines from receiving transplants, or give them lower priority on crowded organ waitlists. Other programs, however, say they plan no such restrictions — for now.
At issue is whether transplant patients who refuse the shots are not only putting themselves at greater risk for serious illness and death from a COVID infection, but also squandering scarce organs that could benefit others. The argument echoes the demands that smokers quit cigarettes for six months before receiving lung transplants or that addicts refrain from alcohol and drugs before receiving new livers.
"It is a matter of active debate," said Dr. Deepali Kumar, an expert in transplant infectious diseases at the University of Toronto and president-elect of the American Society of Transplantation. "It's really an individual program decision. In many programs, it's in flux."
Leilani Lutali, 56, a late-stage kidney disease patient from Colorado Springs, Colorado, learned in a Sept. 28 letter from UCHealth in Denver that if she didn't begin a COVID vaccine series within 30 days, she would lose her spot on the transplant waiting list. Both she and her living donor, Jaimee Fougner, 45, of Peyton, Colorado, refused to get vaccinated, citing religious objections and uncertainty about the safety and effectiveness of the vaccines.
"I have too many questions that remain unanswered at this point. I feel like I'm being coerced into not being able to wait and see and that I have to take the shot if I want this lifesaving transplant," Lutali said.
She said she offered to be tested for COVID before the surgery or to sign a waiver absolving the hospital of legal risk for her refusal of the vaccine. "At what point do you no longer become a partner in your own care regardless of your own concerns?" she said.
Lutali now hopes to take her transplant quest to Texas, where several hospitals, including Houston Methodist and Baylor University Medical Center in Dallas, said they don't require COVID vaccinations to approve active candidates for the national waiting list.
The difference between policies in Denver and Dallas — and elsewhere — underscore a tense national divide. As of late April, fewer than 7% of transplant programs nationwide reported inactivating patients who were unvaccinated or partially vaccinated against COVID, according to research by Dr. Krista Lentine, a nephrologist at the Saint Louis University School of Medicine.
But that was just a snapshot in late spring, and like all COVID-related practices, it's "rapidly changing," Lentine said.
UCHealth in Denver began requiring COVID vaccinations for transplant patients in late August, citing the American Society of Transplantation's August recommendation that "all solid organ transplant recipients should be vaccinated against SARS-CoV-2."
Patients who undergo transplant surgery have their immune systems artificially suppressed during recovery, to keep their bodies from rejecting the new organ. That leaves unvaccinated transplant patients at "extreme risk" of severe illness if they are infected by COVID, with mortality rates estimated at 20% to 30%, depending on the study, Dan Weaver, a spokesperson for UCHealth said. For the same reason, transplant patients who receive COVID vaccines after surgery may fail to mount a strong immune response, research shows.
UW Medicine in Seattle began mandating COVID vaccines this summer, said Dr. Ajit Limaye, director of the solid organ transplant infectious diseases program. Patients were already required to meet other stringent criteria to be considered for transplantation, including receiving inoculations against several illnesses, such as hepatitis B and influenza.
"For anyone who does not have a medical contraindication, basically, we're requiring it," he said. "There's a very strong sense to make it a requirement, like all the other hoops, straight up."
By contrast, Northwestern Medicine in Chicago, where doctors performed the first double-lung transplant on a COVID patient in June 2020, is encouraging — but not requiring — vaccination against the pandemic disease.
"We don't decline care of transplant based on vaccine status," said Jenny Nowatzke, Northwestern's manager of national media relations. "The patient also doesn't get any lower scores."
The lack of consistent practice across programs sends a mixed message to the public, said Dr. Kapilkumar Patel, director of the lung transplant program at Tampa General Hospital in Florida, where COVID vaccines are not required.
"We mandate hepatitis and influenza vaccines, and nobody has an issue with that," he said. "And now we have this one vaccination that can save lives and make an impact on the post-transplant recovery phase. And we have this huge uproar from the public."
Nearly 107,000 candidates are waiting for organs in the U.S.; dozens die each day still waiting. Transplant centers evaluate which patients are allowed to be placed on the national list, taking into account medical criteria and other factors like financial means and social support to ensure that donor organs won't fail.
"We really make all kinds of selective value judgments," said Dr. David Weill, former director of Stanford University Medical Center's lung and heart-lung transplant program who now works as a consultant. "When we're selecting in the committee room, I hear the most subjective, value-based judgments about people's lives. This is just another thing."
The centers can choose to place candidates on inactive status for a variety of reasons, including medical noncompliance, according to data from the United Network for Organ Sharing, which oversees transplants. As of Sept. 30, that category accounted for 738 of more than 47,000 registrants waiting in inactive status, though it's not clear how many are tied to vaccination status.
A particularly thorny question involves unvaccinated people who need transplants specifically because COVID infections destroyed their organs. As of late September, more than 200 lungs, as well as at least six hearts and two heart-lung combinations, had been transplanted for COVID-related reasons in the U.S., according to UNOS data.
Many of those organs were transplanted earlier in the pandemic, before any COVID vaccine was widely available. That's no longer the case, Weill said. "If you're just now getting vaccinated, you've done it at gunpoint, actually," he said. "It's not just a personal choice; they're making some kind of a statement."
Such patients are usually younger and healthier than other transplant candidates, aside from the COVID-related damage, and they're often acutely ill enough to go to the top of any transplant list. "The sick COVID patient might go ahead of the stable cystic fibrosis patient," Weill said.
Tampa General's Patel said he performed a lung transplant on a patient who was transferred to Florida after being delisted at another center because he wasn't vaccinated for COVID. "I mandated with him basically on a handshake that he will get his vaccine post-transplant," Patel said. "But his family? They haven't agreed."
Eventually, Patel said, he thinks nearly all transplant programs will mandate COVID vaccination, largely because transplant centers are evaluated on the longer-term survival of their patients.
"I think it's going to spread like wildfire across the country," he said. "If you start losing patients in a year due to COVID, it will be mandated sooner rather than later.
Dr. Aaron Kheriaty, a University of California-Irvine psychiatry professor, felt he didn't need to be vaccinated against COVID because he'd fallen ill with the disease in July 2020.
So, in August, he sued to stop the university system's vaccination mandate, saying "natural" immunity had given him and millions of others better protection than any vaccine could.
A judge on Sept. 28 dismissed Kheriaty's request for an injunction against the university over its mandate, which took effect Sept. 3. While Kheriaty intends to pursue the case further, legal experts doubt that his and similar lawsuits filed around the country will ultimately succeed.
That said, evidence is growing that contracting SARS-CoV-2, the virus that causes COVID-19, is generally as effective as vaccination at stimulating your immune system to prevent the disease. Yet federal officials have been reluctant to recognize any equivalency, citing the wide variation in COVID patients' immune response to infection.
Like many disputes during the COVID pandemic, the uncertain value of a prior infection has prompted legal challenges, marketing offers and political grandstanding, even as scientists quietly work in the background to sort out the facts.
For decades, doctors have used blood tests to determine whether people are protected against infectious diseases. Pregnant mothers are tested for antibodies to rubella to help ensure their fetuses won't be infected with the rubella virus, which causes devastating birth defects. Hospital workers are screened for measles and chickenpox antibodies to prevent the spread of those diseases. But immunity to COVID seems trickier to discern than those diseases.
The Food and Drug Administration has authorized the use of COVID antibody tests, which can cost about $70, to detect a past infection. Some tests can distinguish whether the antibodies came from an infection or a vaccine. But neither the FDA nor the Centers for Disease Control and Prevention recommend using the tests to assess whether you're, in fact, immune to COVID. For that, the tests are essentially useless because there's no agreement on the amount or types of antibodies that would signal protection from the disease.
"We don't yet have full understanding of what the presence of antibodies tells us about immunity," said Kelly Wroblewski, director of infectious diseases at the Association of Public Health Laboratories.
By the same token, experts disagree on how much protection an infection delivers.
In the absence of certainty and as vaccination mandates are levied across the country, lawsuits seek to press the issue. Individuals who claim that vaccination mandates violate their civil liberties argue that infection-acquired immunity protects them. In Los Angeles, six police officers have sued the city, claiming they have natural immunity. In August, law professor Todd Zywicki alleged that George Mason University's vaccine mandate violated his constitutional rights given he has natural immunity. He cited a number of antibody tests and an immunologist's medical opinion that it was "medically unnecessary" for him to be vaccinated. Zywicki dropped the lawsuit after the university granted him a medical exemption, which it claims was unrelated to the suit.
Republican legislators have joined the crusade. The GOP Doctors Caucus, which consists of Republican physicians in Congress, has urged people leery of vaccination to instead seek an antibody test, contradicting CDC and FDA recommendations. In Kentucky, the state Senate passed a resolution granting equal immunity status to those who show proof of vaccination or a positive antibody test.
Hospitals were among the first institutions to impose vaccine mandates on their front-line workers because of the danger of them spreading the disease to vulnerable patients. Few have offered exemptions from vaccination to those previously infected. But there are exceptions.
Two Pennsylvania hospital systems allow clinical staff members to defer vaccination for a year after testing positive for COVID. Another, in Michigan, allows employees to opt out of vaccination if they present evidence of previous infection and a positive antibody test in the previous three months. In these cases, the systems indicated they were keen to avoid staffing shortages that could result from the departure of vaccine-shunning nurses.
For Kheriaty, the question is simple. "The research on natural immunity is quite definitive now," he told KHN. "It's better than immunity conferred by vaccines." But such categorical statements are clearly not shared by most in the scientific community.
Dr. Arthur Reingold, an epidemiologist at UC-Berkeley, and Shane Crotty, a virologist at the respected La Jolla Institute for Immunology in San Diego, gave expert witness testimony in Kheriaty's lawsuit, saying the extent of immunity from reinfection, especially against newer variants of COVID, is unknown. They noted that vaccination gives a huge immunity boost to people who've been ill previously.
Yet not all of those pushing for recognition of past infection are vaccine critics or torchbearers of the anti-vaccine movement.
Dr. Jeffrey Klausner, clinical professor of population and public health sciences at the University of Southern California, co-authored an analysis published last week that showed infection generally protects for 10 months or more. "From the public health perspective, denying jobs and access and travel to people who have recovered from infection doesn't make sense," he said.
In his testimony against Kheriaty's case for "natural" immunity to COVID, Crotty cited studies of the massive COVID outbreak that swept through Manaus, Brazil, early this year that involved the gamma variant of the virus. One of the studies estimated, based on tests of blood donations, that three-quarters of the city's population had already been infected before gamma's arrival. That suggested that previous infection might not protect against new variants. But Klausner and others suspect the rate of prior infection presented in the study was a gross overestimate.
A large August study from Israel, which showed better protection from infection than from vaccination, may help turn the tide toward acceptance of prior infection, Klausner said. "Everyone is just waiting for Fauci to say, 'Prior infection provides protection,'" he said.
When Dr. Anthony Fauci, the top federal expert on infectious diseases, was asked during a CNN interview last month whether infected people were as well protected as those who've been vaccinated, he hedged. "There could be an argument" that they are, he said. Fauci did not immediately respond to a KHN request for further comment.
CDC spokesperson Kristen Nordlund said in an email that "current evidence" shows wide variation in antibody responses after COVID infection. "We hope to have some additional information on the protectiveness of vaccine immunity compared to natural immunity in the coming weeks."
A "monumental effort" is underway to determine what level of antibodies is protective, said Dr. Robert Seder, chief of the cellular immunology section at the National Institute of Allergy and Infectious Diseases. Recent studies have taken a stab at a number.
Antibody tests will never provide a yes-or-no answer on COVID protection, said Dr. George Siber, a vaccine industry consultant and co-author of one of the papers. "But there are people who are not going to be immunized. Trying to predict who is at low risk is a worthy undertaking."
Healthcare — and how much it costs — is scary. But you're not alone with this stuff, and knowledge is power. "An Arm and a Leg" is a podcast about these issues, and its second season is co-produced by KHN.
In Maryland, hospitals had been suing people — taking them to court and garnishing wages — even though these patients legally qualified for financial assistance, also known as charity care. Those lawsuits are now illegal, because of the state's new Medical Debt Protection Act. But in many other states, it still happens.
This episode, the fourth in our series on charity care, focuses on how that change came about — as well as the coalition of consumer-protection advocates, riled-up activists and healthcare worker unions that made it happen.
We close out the episode by checking in with Jared Walker and his organization, Dollar For. Walker went super-viral on TikTok, telling people how to "crush medical bills" by understanding and applying for the financial assistance most hospitals are required by law to provide. Ten million people saw that video and now Dollar For is working to build an army of volunteers to tackle more than $100 million in medical debt — one bill at a time.
Workers in adult and senior care facilities and in-home aides have been added to the list of California health workers who must be fully vaccinated against the coronavirus.
Those who work directly with people with disabilities — such as employees paid through the state's regional center network, aides contracted by agencies, and in-home support service workers who don't live with the person they assist — are now included in the vaccine mandate. This new group must be fully vaccinated by Nov. 30.
Previous health orders covered only people working in licensed congregate settings like nursing homes, leaving out staff members who support 89% of people in California with developmental disabilities living with family, on their own or in group homes.
For months, that left people like Tim Jin who rely on aides for everyday tasks to wonder: Is the person brushing my teeth vaccinated?
"Due to my disability, I cannot do anything like cooking, eating, using the restroom or even using the microwave on my own. I am totally dependent on others to assist me," Jin said.
Jin has cerebral palsy and lacks the use of his arms or hands. He communicates mainly by typing with his toes on an iPad mounted next to his feet on his electric wheelchair. Up to six health aides come in and out of his home every day, helping him with intimate tasks like eating and bathing.
"The staff who come into my home should be vaccinated. It's that simple," he said. "It's a matter of life and death."
Only health workers with religious objections or a qualifying medical condition can be exempted from the vaccine requirement. They will be tested weekly for the virus that causes COVID-19 and must wear high-grade masks when working.
But the order applied only to L.A. County, leaving out the 200,000 Californians with developmental disabilities living elsewhere, including Tim Jin, who lives in neighboring Orange County.
Advocates for people with disabilities hoped state health officials would use L.A. County as a model, but California's Sept. 28 health order went further, mandating the vaccine for some in-home support service workers, as well as home health aides.
"These care settings are home to Californians with complex medical conditions, all of whom are at high risk of having severe but preventable outcomes, including hospitalization, severe illness and death," said Dr. Tomás Aragón, California's public health officer.
California has reported 19,830 confirmed COVID outbreaks throughout the pandemic, and nearly 50% of those were reported in healthcare, congregate care and direct care settings, according to the California Department of Public Health. Of these outbreaks, the most (22%) have occurred in adult and senior care facilities and in-home direct care settings.
Studies show that people with intellectual and developmental disabilities often have underlying health conditions that make them more susceptible to COVID.
"And when they do get diagnosed with COVID-19, they are about two to three times more likely to die from the disease," said Scott Landes, an associate professor of sociology at Syracuse University's Maxwell School of Citizenship and Public Affairs.
"Which really just makes sense for COVID," he said. "If you've got a caregiver that's right up next to you, all day, it's going to increase the chances that you could get the disease."
This story is from a reporting partnership that includes Southern California Public Radio, NPR and KHN.
SANTA CRUZ, Calif. — For more than 30 years, public health officials and nonprofits in California have provided clean hypodermic needles to people who use them to inject drugs.
For nearly that entire time, opponents have accused the free needle programs of promoting drug use and homelessness.
But recently, opponents have deployed a novel strategy to shut them down: using environmental regulations to sue over needle waste. They argue that contaminated needles pollute parks and waterways — and their lawsuits have succeeded across the state.
A bill signed Monday by Democratic Gov. Gavin Newsom will thwart that tactic.
Environmental challenges have already forced free needle programs in Orange County, Chico and Eureka to close or modify their operations.
The new law comes at a critical moment for a program in Santa Cruz. A final court ruling that could determine the fate of the program is expected within days, and it's not clear how the law will affect the judge's decision.
"We're in the midst of an opioid crisis," said Assembly member Joaquin Arambula (D-Fresno), a physician who wrote the bill Newsom signed, AB 1344. "We need all the tools that we have available for us to address this crisis head-on."
Despite the legislative victory, lawsuits to challenge needle programs on other grounds are still possible, and local ordinances banning needle exchanges have flourished across California.
Under the new law, which takes effect Jan. 1, opponents of free needle programs will no longer be able to sue over violations of the California Environmental Quality Act, known as CEQA.
CEQA requires projects that need approval from a public agency or receive public funding to be assessed for their potential environmental impacts. This requirement applies to major construction projects, like reservoirs and freeway overpasses, and localized ones such as affordable housing. CEQA is enforced by lawsuits and has been invoked over the years to stop or slow unpopular proposals, like homeless shelters.
California allows licensed physicians to give clean needles to patients without authorization. Free needle programs run by local governments or community groups must be approved by the state, a county or city.
These programs, which allow people to dispose of used "rigs" and get new ones, attempt to reduce the spread of HIV and hepatitis C, which can spread among drug users who share needles, and decrease infections among users. Some are true "exchanges" that require people to turn in a used needle to get a new one. Others allow people to take what they need without returning them.
In the past few years, opponents have started focusing on the programs' environmental impacts because some needles end up on the ground or in creeks and rivers.
Walt McNeill, a lawyer in Nevada City, California, challenged nonprofit-run needle programs in Chico, Eureka and Santa Cruz on behalf of local officials, former law enforcement officers and community groups.
McNeill said his clients aren't opposed to needle programs in general, just ones they believe are run irresponsibly. "You have no idea where the needles are going, and no way of recovering needles effectively," he said.
The trend in environmental challenges began a few years ago when the only needle program in Orange County shut down following a CEQA lawsuit. In 2020, a program created to address needle pollution in Chico closed after it settled a CEQA lawsuit, then later reopened on a smaller scale under a physician's authority. Also in 2020, Eureka officials wouldn't reauthorize a needle program after McNeill challenged it on environmental grounds.
Last year, McNeill sued one of two free needle programs in Santa Cruz County. Run by the Harm Reduction Coalition of Santa Cruz County, it operates out of a van and serves up to 75 people each Sunday on the same street corner in an industrial part of town. The complaint alleged the program "spread tens of thousands of used and unused hypodermic needle 'litter'" throughout the community and has led to "environmental degradation of the creeks, streams, rivers and beaches."
A superior court judge in Sacramento is expected to hand down her ruling soon. McNeill said he's confident the judge will side with his clients despite the new law because of other flaws in the program. If she disagrees, he said, he may file another suit on other grounds.
"No matter how you slice it, the program will be deauthorized," he said.
But Denise Elerick, founder of the coalition, said she believes her program will survive. She said arguments about needle litter mask anti-homeless sentiment.
"They say it's about the environment but it's not. They want people to die and disappear," she said.
Decades of research shows that needle giveaways aren't a major source of pollution, and that people who get needles from an exchange are more likely to dispose of them properly than those who don't.
A 2019 study by Santa Cruz County's Health Services Agency found that for every 10 needles that ended up on the ground or in a river, 1,000 made it into a sharps container, used to collect used needles, or an official disposal point. The report concluded that reducing needle litter would require more syringe programs and disposal sites, not fewer.
The Santa Cruz program, which began in 2018, gives out as many syringes as people request.
In addition to offering nine sizes of syringes, the program gives out sharps containers, ranging in capacity from a quarter gallon to 8 gallons, which can be returned, picked up or left at disposal kiosks around town.
On one Sunday in August, 56 people stopped by the van and 51 sharps containers were distributed. The coalition would not disclose how many needles it typically gives away.
The clients also gathered supplies to protect them from staph infections, COVID and other dangers: condoms, hand sanitizer, masks, alcohol pads, drug-testing strips to ferret out fentanyl, and medication to reverse overdoses. The program even offered clean pipes to encourage that drugs be smoked — rather than injected — and reduce the spread of COVID from sharing pipes.
Many who line up each week live in nearby parks and alongside creeks that are the focus of opponents' environmental concerns. They said they have a vested interest in keeping the environment clean.
"Just because we're drug addicts doesn't mean we don't take care of ourselves," said one woman, 35. (In order to observe how the program works, KHN agreed not to name the people procuring supplies.) "Yeah, I live in a tent, but my tent is clean. I try to take care of other people and I take care of myself."
The new law comes too late for programs like Chico's, because the city has since passed an ordinance banning syringe exchanges. Similar bans have been adopted in Anaheim, Oroville, Butte County, Yuba City and elsewhere in the past few years.
Ryan Coonerty, a Santa Cruz County supervisor, said the county likely won't adopt a ban, though he's disappointed by Newsom's decision. He believes the nonprofit needle program in Santa Cruz contributes to needle pollution more than the county-run program, which requires people to turn in used needles to get fresh ones.
"We will continue to struggle with needle litter and, unfortunately, not get any help from the state to stop needles from going into the ocean, parks and beaches," he said.
But the Centers for Disease Control and Prevention and other public health agencies say one-for-one programs limit the ways people can safely dispose of sharps, forcing them to hang onto their needles until the next needle exchange. That's not realistic, according to the people who lined up to get needles from the Santa Cruz program.
"A lot of us are homeless," said one 40-year-old woman, "and we can only stay someplace for so long."
Anthem Blue Cross, the country's second-biggest health insurance company, is behind on billions of dollars in payments owed to hospitals and doctors because of onerous new reimbursement rules, computer problems and mishandled claims, say hospital officials in multiple states.
Anthem, like other big insurers, is using the COVID-19 crisis as cover to institute "egregious" policies that harm patients and pinch hospital finances, said Molly Smith, group vice president at the American Hospital Association. "There's this sense of 'Everyone's distracted. We can get this through,'" she said.
Hospitals are also dealing with a spike in retroactive claims denials by UnitedHealthcare, the biggest health insurer, for emergency department care, AHA says.
Disputes between insurers and hospitals are nothing new. But this fight sticks more patients in the middle, worried they'll have to pay unresolved claims. Hospitals say it is hurting their finances as many cope with COVID surges — even after the industry has received tens of billions of dollars in emergency assistance from the federal government.
"We recognize there have been some challenges" to prompt payments caused by claims-processing changes and "a new set of dynamics" amid the pandemic, Anthem spokesperson Colin Manning said in an email. "We apologize for any delays or inconvenience this may have caused."
Virginia law requires insurers to pay claims within 40 days. In a Sept. 24 letter to state insurance regulators, VCU Health, a system that operates a large teaching hospital in Richmond associated with Virginia Commonwealth University, said Anthem owes it $385 million. More than 40% of the claims are more than 90 days old, VCU said.
For all Virginia hospitals, Anthem's late, unpaid claims amount to "hundreds of millions of dollars," the Virginia Hospital and Healthcare Association said in a June 23 letter to state regulators.
Nationwide, the payment delays "are creating an untenable situation," the American Hospital Association said in a Sept. 9 letter to Anthem CEO Gail Boudreaux. "Patients are facing greater hurdles to accessing care; clinicians are burning out on unnecessary administrative tasks; and the system is straining to finance the personnel and supplies" needed to fight COVID.
Complaints about Anthem extend "from sea to shining sea, from New Hampshire to California," AHA CEO Rick Pollack told KHN.
Substantial payment delays can be seen on Anthem's books. On June 30, 2019, before the pandemic, 43% of the insurer's medical bills for that quarter were unpaid, according to regulatory filings. Two years later that figure had risen to 53% — a difference of $2.5 billion.
Anthem profits were $4.6 billion in 2020 and $3.5 billion in the first half of 2021.
Alexis Thurber, who lives near Seattle, was insured by Anthem when she got an $18,192 hospital bill in May for radiation therapy that doctors said was essential to treat her breast cancer.
The treatments were "experimental" and "not medically necessary," Anthem said, according to Thurber. She spent much of the summer trying to get the insurer to pay up — placing two dozen phone calls, spending hours on hold, sending multiple emails and enduring unmeasurable stress and worry. It finally covered the claim months later.
"It's so egregious. It's a game they're playing," said Thurber, 51, whose cancer was diagnosed in November. "Trying to get true help was impossible."
Privacy rules prevent Anthem from commenting on Thurber's case, said Anthem spokesperson Colin Manning.
When insurers fail to promptly pay medical bills, patients are left in the lurch. They might first get a notice saying payment is pending or denied. A hospital might bill them for treatment they thought would be covered. Hospitals and doctors often sue patients whose insurance didn't pay up.
Hospitals point to a variety of Anthem practices contributing to payment delays or denials, including new layers of document requirements, prior-authorization hurdles for routine procedures and requirements that doctors themselves — not support staffers — speak to insurance gatekeepers. "This requires providers to literally leave the patient['s] bedside to get on the phone with Anthem," AHA said in its letter.
Anthem often hinders coverage for outpatient surgery, specialty pharmacy and other services in health systems listed as in-network, amounting to a "bait and switch" on Anthem members, AHA officials said.
"Demanding that patients be treated outside of the hospital setting, against the advice of the patient's in-network treating physician, appears to be motivated by a desire to drive up Empire's profits," the Greater New York Hospital Association wrote in an April letter to Empire Blue Cross, which is owned by Anthem.
Anthem officials pushed back in a recent letter to the AHA, saying the insurer's changing rules are intended partly to control excessive prices charged by hospitals for specialty drugs and nonemergency surgery, screening and diagnostic procedures.
Severe problems with Anthem's new claims management system surfaced months ago and "persist without meaningful improvement," AHA said in its letter.
Claims have gotten lost in Anthem's computers, and in some cases VCU Health has had to print medical records and mail them to get paid, VCU said in its letter. The cash slowdown imposes "an unmanageable disruption that threatens to undermine our financial footing," VCU said.
United denied $31,557 in claims for Emily Long's care after she was struck in June by a motorcycle in New York City. She needed surgery to repair a fractured cheekbone. United said there was a lack of documentation for "medical necessity" — an "incredibly aggravating" response on top of the distress of the accident, Long said.
The Brooklyn hospital that treated Long was "paid appropriately under her plan and within the required time frame," said United spokesperson Maria Gordon Shydlo. "The facility has the right to appeal the decision."
United's unpaid claims came to 54% as of June 30, about the same level as two years previously.
When Erin Conlisk initially had trouble gaining approval for a piece of medical equipment for her elderly father this summer, United employees told her the insurer's entire prior-authorization database had gone down for weeks, said Conlisk, who lives in California.
"There was a brief issue with our prior-authorization process in mid-July, which was resolved quickly," Gordon Shydlo said.
When asked by Wall Street analysts about the payment backups, Anthem executives said it partly reflects their decision to increase financial reserves amid the health crisis.
"Really a ton of uncertainty associated with this environment," John Gallina, the company's chief financial officer, said on a conference call in July. "We've tried to be extremely prudent and conservative in our approach."
During the pandemic, hospitals have benefited from two extraordinary cash infusions. They and other medical providers have received more than $100 billion through the CARES Act of 2020 and the American Rescue Plan of 2021. Last year United, Anthem and other insurers accelerated billions in hospital reimbursements.
Those are the systems most hurt now by insurer payment delays, hospital officials said. Federal relief funds "have been a lifeline, but they don't make people whole in terms of the losses from increased expenses and lost revenue as a result of the COVID experience," Pollack said.
Several health systems declined to comment about claims-payment delays or didn't respond to a reporter's queries. Among individual hospitals "there is a deep fear of talking on the record about your largest business partner," AHA's Smith said.
Alexis Thurber worried she might have to pay her $18,192 radiation bill herself, and she's not confident her Anthem policy will do a better job next time of covering the cost of her care.
"It makes me not want to go to the doctor anymore," she said. "I'm scared to get another mammogram because you can't rely on it."
GUNNISON, Colo. — For the past eight years, my wife, Ky Hamilton, has undergone gender-affirming hormone therapy. As a transgender woman, she injects Depo-Estradiol liquid estrogen into her thigh once a week. This drug has allowed her to physically transition as a woman, and each vial, which lasts around five weeks, was completely covered by insurance.
That was until she lost her job in April 2020 and we switched to a subsidized private health insurance plan in Colorado's Affordable Care Act marketplace. We discovered that our new insurance from Anthem doesn't cover Depo-Estradiol and it would cost $125 out-of-pocket per vial. With both of us — and our four pets — depending heavily on Ky's weekly $649 unemployment check, such medical expenses proved difficult. And as of Sept. 6, those unemployment checks ran out.
"I'm absolutely stressed. I don't know what to do," Ky said in August as we tried to find a solution.
Because of Ky's physical transition as a transgender woman, her body doesn't make the testosterone it once used to. So, without the medication, she would essentially go through menopause. A decline in estrogen levels can also cause transgender women to lose the physical transitions they've achieved, resulting in gender dysphoria, which is psychological distress from the mismatch between their biological sex and their gender identity.
Unfortunately, Ky's experience is shared by many other transgender Americans. The COVID-19 pandemic has caused millions of people to lose their jobs and private health insurance, particularly LGBTQ adults, who reported at higher rates than non-LGBTQ adults that they lost their jobs during the crisis. Consequently, enrollment surged in ACA plans and Medicaid, the state-federal health program for low-income people. Yet many of those plans don't fully cover gender-affirming care, partly because of conservative policies and lack of scientific research on how crucial this care is for transgender patients.
According to a survey by Out2Enroll, a national initiative to connect LGBTQ people with ACA coverage, 46% of the 1,386 silver marketplace plans polled cover all or some medically necessary treatment for gender dysphoria. However, 7% have trans-specific exclusions, 14% have some exclusions, and 33% don't specify.
"It's this whack-a-mole situation where plans for the most part do not have blanket exclusions, but where people are still having difficulty getting specific procedures, medications, etc., covered," said Kellan Baker, executive director of the Whitman-Walker Institute, a nonprofit that focuses on LGBTQ research, policy and education.
Yet even in states such as California that require their Medicaid programs to cover gender-affirming care, patients still struggle to get injectable estrogen, said Dr. Amy Weimer, an internist who founded the UCLA Gender Health Program. While California Medicaid, or Medi-Cal, covers Depo-Estradiol, doctors must request treatment authorizations to prove their patients need the drug. Weiner said those are rarely approved.
Such "prior authorizations" are an issue across Medicaid and ACA plans for medications including injectable estrogen and testosterone, which is used by transgender men, Baker said.
The lack of easy coverage may reflect the fact that injectable estrogen, which provides the high doses of the hormone needed for transgender women to physically transition, isn't commonly used by non-trans women undergoing hormone therapy to treat menopause or other issues, Weimer said.
It also may be because cheaper options, including daily estrogen pills, exist, but these increase the risk of blood clots. Estrogen patches release the hormone through the skin but can cause skin reactions, and many people struggle to absorb enough estrogen, Weimer said. Consequently, many of Weimer's patients wear up to four patches at a time, but Medi-Cal limits the number of patches patients can get monthly.
While such insurance gaps have existed for long before the pandemic, the current crisis seems to have amplified the matter, according to Weimer.
The ACA prohibits discrimination based on race, color, national origin, age, disability and sex in health programs and activities that receive federal financial assistance. The Trump administration significantly narrowed the power of that provision, including eliminating health insurance protections for transgender people.
However, in June 2020, before the Trump regulations could take effect, the Supreme Court ruled in Bostock v. Clayton County, Georgia, that employment discrimination based on sex includes sexual orientation and gender identity.
This landmark decision has served as a crucial tool to address LGBTQ discrimination in many aspects of life, including healthcare. As of July, for example, Alaska Medicaid can no longer exclude gender-affirming treatment after Swan Being, a transgender woman, won a class-action lawsuit that relied in part on the Bostock decision.
The Biden administration announced in May that the U.S. Department of Health and Human Services Office for Civil Rights will include gender identity and sexual orientation in its enforcement of the ACA's anti-discrimination provision. The next month, Veterans Affairs health benefits were expanded to include gender confirmation surgery.
But for now, the pressure is still on patients like Ky to fight for their health benefits.
Anthem spokesperson Tony Felts said Depo-Estradiol is not on the list of covered drugs for its ACA plans, though many of its private employer-sponsored plans cover it.
Because we had one of those ACA plans, Ky had to be persistent. After four months of emails and phone calls — and just before unemployment ran out — Anthem finally authorized her Depo-Estradiol. That brings her out-of-pocket cost to $60 per vial for the next year. It's still expensive for us right now, but we'll find a way to make it work.
"The reality is that trans people are more likely to be in poverty and don't have the time or knowledge to spend four months fighting to get their estradiol like I did," Ky said.
ATLANTA — Sometimes, Pamela Winn isn't sure how to connect with people, even those she loves, like her 9-month-old granddaughter. When the baby is in her arms, "I sit there quietly, and I don't know what to say. What to do," she said, her eyes filling with tears. "My socializing skills are just not there anymore."
On days like these, Winn, who lives south of Atlanta, is haunted by the memory of her 6-by-9-foot prison cell, where she spent eight months in solitary confinement more than 10 years ago. She said she now feels "safest when I'm by myself."
It's a common paradox of solitary confinement, said Craig Haney, a professor of social psychology at the University of California-Santa Cruz. Instead of craving the company of others after release from social isolation, many former prisoners want just the opposite.
"Solitary forces prisoners to live in a world without people," he said. "And they adapt to it."
Research has long shown that solitary confinement — isolating prisoners for weeks, months, years and sometimes decades — has devastating effects on their physical and mental health. Once released, either to the general prison population or to the outside world, they can face a suite of problems, like heart damage and depression. They're often hypersensitive to light, sound, smell or touch. Like Winn, they may struggle to read social cues. People, Haney said, "become a source of anxiety rather than support."
And the coronavirus pandemic may have made the situation worse.
Before the pandemic, the estimated number of people in solitary confinement in the U.S. ranged from 50,000 to 80,000 on any given day, though many advocacy organizations believe counts are underestimated. The Centers for Disease Control and Prevention states that medical isolation — the separation of people with a contagious disease from the rest of the population — should not hinge on solitary confinement. Yet, at the height of the pandemic last year, up to 300,000 incarcerated individuals were in solitary, according to estimates from Solitary Watch and The Marshall Project, non-profits focused on criminal justice.
"Jails and prisons, like many organizations, acted in fear," said Tammie Gregg, deputy director of the American Civil Liberties Union's National Prison Project. "They thought the way to keep people from infecting each other was to simply put them in solitary."
Solitary confinement can serve many goals, from punishment to protection. And it is called many things — protective custody, restrictive or secure housing, administrative or disciplinary segregation, or simply "the Hole."
"The conditions are essentially the same: It's the extreme deprivation of any meaningful social contact," Haney said.
In the so-called Mandela Rules, named for South African leader Nelson Mandela, who was imprisoned for 27 years, the United Nations associates solitary confinement lasting longer than 15 consecutive days with a form of torture. More than half of all U.S. states have introduced or passed some type of legislation restricting or regulating the use of solitary confinement — like limiting the practice for juveniles, for example. But it is still widely used in American jails and prisons.
Inmates in solitary typically live in a small cell for up to 23 hours a day. They have little sensory stimulation, like sunlight. Access to reading materials, educational programming and personal property is limited or nonexistent. Prisoners may get one hour in a recreational yard, an equally isolated area typically enclosed or surrounded by concrete walls, with a secured high window that opens for fresh air.
The isolation can be particularly destabilizing for people with preexisting mental health conditions, often exacerbating underlying issues that cause people to end up behind bars in the first place. "It's a downward spiral," said Haney.
A Florida State University study published earlier this year found that prisoners with mental illness, especially bipolar disorder, severe depression and schizophrenia, were up to 170% more likely to be placed in solitary for extended periods. In many prisons, experts worry, mental health treatment is nonexistent, making matters worse.
But even among people without a history of mental health problems, it may be impossible to predict who is susceptible to the harmful effects of solitary confinement, including suicide.
Pamela Winn, a registered nurse by training, was incarcerated in 2008 and later convicted to a 6½-year federal prison sentence for healthcare fraud. As the now-53-year-old African American woman with red-colored curls sits in her ranch home, her mind goes back to what she said was the darkest time of her life.
When she entered a federal holding facility south of Atlanta, she said, she was a healthy woman. She was also six weeks pregnant. One day, she fell as she was trying to step into a van while shackled. Three months later, she miscarried and was put into solitary confinement for what she was told was medical observation.
After a few months, she was transferred to a municipal prison, where she was placed into solitary again, this time for protection. For a total of eight months, at two facilities, she lived in tiny cells, with iron beds, thin foam mattresses, and metal sinks with toilets attached.
"No window. No mirror. No clock. No concept of time," she said. She was allowed to leave her cell for one hour a day. She could shower three times a week if staffers were available.
In the beginning, she replayed the traumatic memory of the night she lost her baby. Eventually, she joined in when other inmates screamed in their cells.
"I acted out. I threw stuff against the wall. I was angry," she said. Before she went to sleep, she prayed for God to take her. "But I kept waking up."
In Haney's experience, prisoners who develop a strategy to withstand the excruciating loop of idleness have a better chance of surviving. Some individuals force themselves to maintain a routine, to act as if there is a coherence in their life, "even though there isn't," he said.
Winn said she developed a strategy: She would start the day by praying. She would picture what her two teenage sons were doing. She would do sit-ups and mental exercises, like remembering street names. After solitary, she served most of her sentence in a federal prison in Florida and was released in 2013.
Her time in solitary scarred her for life, she said. To this day, she has high blood pressure. Paranoia is a constant companion; her house is surrounded by a solid wooden fence with a security gate, and she has two Rottweilers. Small spaces make her anxious, and she can't tolerate strangers getting too close, such as in a coffee shop line.
While she struggles to connect with her granddaughter, Winn keeps a journal, hoping that one day, when her granddaughter is old enough, she'll understand.
"She can read it and learn about everything that's in my heart and on my mind … if I'm still here, if I'm not here, wherever I am."
Both Haney and Gregg said jails and prisons have alternatives to long-term, extreme isolation. Mentally ill prisoners who engage in disciplinary infractions should be put into a treatment-oriented unit, said Haney.
For someone who acts violently, solitary confinement should be only a short-term solution aimed at acutely de-escalating the outburst, said Gregg. Afterward, those individuals should go to units that provide programming to address the root cause of their behavior. This may mean separation from the general prison population, but less time in total isolation.
A similar model could also apply to prisoners in solitary for their own safety, such as former Minneapolis police officer Derek Chauvin, who is serving a 22½-year-prison sentence for the murder of George Floyd. They could be placed in smaller units with individuals who have undergone a thorough risk assessment, and with access to education and training, Haney said.
Prisoner advocates are hopeful that solitary confinement in the U.S. will eventually be a concept of the past. In April, New York became the first state to codify the U.N.'s Mandela Rules that ban solitary after 15 consecutive days, when the Halt Solitary Confinement Act was signed into law. The legislation will take effect next April.
After Winn's release from prison, she founded RestoreHER, a nonprofit that advocates to end the mass incarceration of women of color, and pregnant people, in particular. She also helped enact laws in Georgia and North Carolina that bar the shackling of pregnant women.
"What I'm doing now gives me some redemption," she said.
The tipping point for Dr. Paula Braveman came when a longtime patient of hers at a community clinic in San Francisco's Mission District slipped past the front desk and knocked on her office door to say goodbye. He wouldn't be coming to the clinic anymore, he told her, because he could no longer afford it.
It was a decisive moment for Braveman, who decided she wanted not only to heal ailing patients but also to advocate for policies that would help them be healthier when they arrived at her clinic. In the nearly four decades since, Braveman has dedicated herself to studying the "social determinants of health" — how the spaces where we live, work, play and learn, and the relationships we have in those places, influence how healthy we are.
As director of the Center on Social Disparities in Health at the University of California-San Francisco, Braveman has studied the link between neighborhood wealth and children's health, and how access to insurance influences prenatal care. A longtime advocate of translating research into policy, she has collaborated on major health initiatives with the health department in San Francisco, the federal Centers for Disease Control and Prevention and the World Health Organization.
Braveman has a particular interest in maternal and infant health. Her latest research reviews what's known about the persistent gap in preterm birth rates between Black and white women in the United States. Black women are about 1.6 times as likely as whites to give birth more than three weeks before the due date. That statistic bears alarming and costly health consequences, as infants born prematurely are at higher risk for breathing, heart and brain abnormalities, among other complications.
Braveman co-authored the review with a group of experts convened by the March of Dimes that included geneticists, clinicians, epidemiologists, biomedical experts and neurologists. They examined more than two dozen suspected causes of preterm births — including quality of prenatal care, environmental toxics, chronic stress, poverty and obesity — and determined that racism, directly or indirectly, best explained the racial disparities in preterm birth rates.
(Note: In the review, the authors make extensive use of the terms "upstream" and "downstream" to describe what determines people's health. A downstream risk is the condition or factor most directly responsible for a health outcome, while an upstream factor is what causes or fuels the downstream risk — and often what needs to change to prevent someone from becoming sick. For example, a person living near drinking water polluted with toxic chemicals might get sick from drinking the water. The downstream fix would be telling individuals to use filters. The upstream solution would be to stop the dumping of toxic chemicals.)
KHN spoke with Braveman about the study and its findings. The excerpts have been edited for length and style.
Q: You have been studying the issue of preterm birth and racial disparities for so long. Were there any findings from this review that surprised you?
The process of systematically going through all of the risk factors that are written about in the literature and then seeing how the story of racism was an upstream determinant for virtually all of them. That was kind of astounding.
The other thing that was very impressive: When we looked at the idea that genetic factors could be the cause of the Black-white disparity in preterm birth. The genetics experts in the group, and there were three or four of them, concluded from the evidence that genetic factors might influence the disparity in preterm birth, but at most the effect would be very small, very small indeed. This could not account for the greater rate of preterm birth among Black women compared to white women.
Q: You were looking to identify not just what causes preterm birth, but also to explain racial differences in rates of preterm birth. Are there examples of factors that can influence preterm birth that don't explain racial disparities?
It does look like there are genetic components to preterm birth, but they don't explain the Black-white disparity in preterm birth. Another example is having an early elective C-section. That's one of the problems contributing to avoidable preterm birth, but it doesn't look like that's really contributing to the Black-white disparity in preterm birth.
Q: You and your colleagues listed exactly one upstream cause of preterm birth: racism. How would you characterize the certainty that racism is a decisive upstream cause of higher rates of preterm birth among Black women?
It makes me think of this saying: A randomized clinical trial wouldn't be necessary to give certainty about the importance of having a parachute on if you jump from a plane. To me, at this point, it is close to that.
Going through that paper — and we worked on that paper over a three- or four-year period, and so there was a lot of time to think about it — I don't see how the evidence that we have could be explained otherwise.
Q: What did you learn about how a mother's broader lifetime experience of racism might affect birth outcomes versus what she experienced within the medical establishment during pregnancy?
There were many ways that experiencing racial discrimination would affect a woman's pregnancy, but one major way would be through pathways and biological mechanisms involved in stress, and stress physiology. In neuroscience, what's been clear is that a chronic stressor seems to be more damaging to health than an acute stressor.
So it doesn't make much sense to be looking only during pregnancy. But that's where most of that research has been done: stress during pregnancy and racial discrimination, and its role in birth outcomes. Very few studies have looked at experiences of racial discrimination across the life course.
My colleagues and I have published a paper where we asked African American women about their experiences of racism and we didn't even define what we meant. Women did not talk a lot about the experiences of racism during pregnancy from their medical providers; they talked about the lifetime experience, and particularly experiences going back to childhood. And they talked about having to worry, and constant vigilance, so that even if they're not experiencing an incident, their antennae have to be out to be prepared in case an incident does occur.
Putting all of it together with what we know about stress physiology, I would put my money on the lifetime experiences being so much more important than experiences during pregnancy. There isn't enough known about preterm birth, but from what is known, inflammation is involved, immune dysfunction, and that's what stress leads to. The neuroscientists have shown us that chronic stress produces inflammation and immune system dysfunction.
Q: What policies do you think are most important at this stage for reducing preterm birth for Black women?
I wish I could just say one policy or two policies, but I think it does get back to the need to dismantle racism in our society. In all of its manifestations. That's unfortunate, not to be able to say, "Oh, here, I have this magic bullet. And if you just go with that, that will solve the problem."
If you take the conclusions of this study seriously, you say, well, policies to just go after these downstream factors are not going to work. It's up to the upstream investment in trying to achieve a more equitable and less racist society. Ultimately, I think that's the take-home, and it's a tall, tall order.