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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.

Lauren Weber:
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Hannah Recht:
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Duluth, Minnesota, is hiring a social worker to help people with addiction and mental health problems.

Pueblo, Colorado, started paying homeless residents to clean city streets.

Palm Beach Gardens, Florida — in Palm Beach County, home to 160 golf courses — is building a new golf course.

A rendering shows the golf course clubhouse and two-story driving range being built by the city of Palm Beach Gardens. The city is using about $2 million in covid relief from the American Rescue Plan Act to help build the $16.8 million course. (City of Palm Beach Gardens)

These are among the thousands of ways cities and counties have started spending the first tranche of covid relief money from the American Rescue Plan Act passed by Congress in March.

That economic rescue package provides $130 billion to cities and counties — with few restrictions on how the money can be spent. For many, it was their first economic relief directly received from the federal government.

States received $195 billion from ARPA. They had gotten other stimulus funding in earlier relief packages, including the CARES Act last year.

The infusion of dollars to cities and counties is intended to aid residents and businesses hurt by the covid-19 pandemic, invest in long-term projects or supplement budgets hit by a drop in tax revenue caused by shutdown restrictions and economic slowdowns.

Half the money was made available in May and the rest will be available next year. The localities have until 2026 to spend it.

The money cannot be used to reduce taxes, add to rainy day funds, pay for legal settlements or buttress pension funds.

Other than that, local governments can spend the money virtually as they will. Many cities, such as Buffalo, New York and Houston, are initially classifying large chunks of the allocation as “revenue replacement,” meaning they will use the funds to make up for shortfalls over what would have been expected if the pandemic had not occurred. This gives them the most flexibility, according to a Brookings Institution report.

Many jurisdictions, including West Palm Beach, Florida, and Livonia, Minnesota, have allocated some ARPA money for employee bonuses.

Chautauqua County, New York, approved nearly $95,000 for handguns and bulletproof vests for its sheriff’s office. The county, which averages 120 inches of snow a year, also approved $480,000 for two snowplows/dump trucks and $810,000 for a snowblower.

Dubois County, Indiana, is using $350,000 of its $8 million to add campsites and a bathroom and make other improvements to a county park.

ARPA — a $1.9 trillion package that in addition to the relief money for localities included funding for covid testing, unemployment benefits, child tax credits and a host of other programs — was a top priority of President Joe Biden and congressional Democrats after they took control in Washington earlier this year. The law was passed without support from Republicans, who argued that earlier covid relief funding had not been fully spent and its effects were still being realized.

The echoes of that argument are still reverberating on Capitol Hill as Republicans fight Democrats on their plans to expand spending for social programs such as Medicare and Medicaid and climate change.

In contrast to past federal fiscal relief efforts — including the CARES Act — ARPA provides support to thousands of cities and counties. Cities with more than 50,000 people get money based on population size, poverty rates and overcrowding. Smaller cities receive money based on population.

The CARES Act provided money to 160 of the country’s largest 1,300 counties, but ARPA money goes to all 3,000-plus counties, said Eryn Hurley, deputy director of government affairs for the National Association of Counties. “This money is very vital,” she said, noting how the pandemic and economic downturn cost counties billions in revenue. “Counties are working hard to invest these funds as fast as possible for their communities and residents,” she said.

Alan Berube, a senior fellow at the Brookings Institution who is tracking the relief dollars, said this is the first new massive grant funding program to city and counties in nearly 50 years with such flexible spending requirements. Most local governments, he added, are still trying to figure out how to spend the cash.

“You have to use this money to address the impact of the pandemic or an underlying condition in the community exacerbated by the pandemic, Berube said.

Some cities, including Seattle and Austin, Texas, are using the money to build affordable housing and programs to deal with the rise in the homeless population.

Berube said the Treasury Department may question whether Palm Beach Gardens, a largely upscale city just north of West Palm Beach, can use $2 million of its $2.9 million ARPA money to help build a golf course.

“That is a very aggressive reading of the regulation,” he said.

Palm Beach Gardens officials defend the spending as “an investment in our community.” Candice Temple, a city spokesperson, noted the money will go to develop the 115-acre site, which will include a par-3 golf course, clubhouse and bike paths. The total cost of the project is $16.8 million, with the rest of the money coming from a bond financing. The city plans to hire seven people to work at the course.

Pueblo, Colorado, Mayor Nicholas Gradisar said his city was grateful for the money even though sales tax revenue rose 3% last year and is up 30% in 2021. He credits the increase to the federal stimulus checks residents received and used to shop and eat out.

“All in all, it could have been a lot worse,” Gradisar said.

His city used some of its ARPA funding to give its employees a $500 incentive payment for getting vaccinated. The money helped improve the vaccination rate from 43% in early August to about 66% when the program ended Sept. 15.

“Obviously, we were pleased more people signed up, but we still have a ways to go,” Gradisar said.

Pueblo will also use some of the ARPA funding to address homelessness and lack of child care, he said.

The city put $500,000 into a summer reading program that rewards children with $100 for completing their assignments and targeted $376,000 for mental health specialists to work with the police. It’s also paying people at a homeless shelter to clean city streets. So far, Pueblo has committed $2.3 million of the $18 million in ARPA money it expects to receive.

Martin Brown, a program manager for the National League of Cities, said city officials have been contacting the organization to ask how they can use the money. “For the $65 billion in revenue, there’s probably 65 billion ways to spend it,” he said.

Phil Galewitz:
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Abortion, an issue that has mostly been simmering under the surface lately, is taking center stage in fights at the Supreme Court, in Congress and in the states, as the fate of legalized abortion in the United States hangs in the balance.

Meanwhile, Congress flirted with disaster as it appeared unlikely to meet deadlines to approve a series of budget bills, including an extension of the federal government’s lending authority. But lawmakers found ways to extend programs long enough to continue negotiating through the fall.

This week’s panelists are Julie Rovner of KHN, Joanne Kenen of Politico and Johns Hopkins, Yasmeen Abutaleb of The Washington Post and Sarah Karlin-Smith of the Pink Sheet.

Among the takeaways from this week’s episode:

• As Democratic lawmakers seek to reduce the cost of the president’s $3.5 trillion plan to boost health and other domestic programs, they are wrestling with whether to cut the number of programs they fund but still give them full support or to keep a wider range of initiatives but fund them for fewer years or at lower levels. Supporters of the latter proposal contend that getting the programs started is important and, if they have a constituency, it will be hard for Congress in the future to cut the programs.
• Sen. Joe Manchin (D-W.Va.), who has been at the center of the negotiations because he was refusing to support the package if it stayed at $3.5 trillion, has called for new initiatives to be means-tested so that benefits don’t go to higher-income Americans. Past experience suggests that can lower the popularity of the programs because it creates more bureaucracy to oversee the benefits and sometimes creates problems with getting voters to buy into the need.
• As the negotiations drag on, it seems less likely that the Democrats will agree on a plan to rein in prescription drug prices. Leaders haven’t come to terms on how they would like to address the issue, and drugmakers have beefed up their advertising campaign to oppose any action that could threaten their profits.
• Manchin may also throw a wrench into the negotiations if he goes forward with plans to seek a provision in the legislative package that makes the so-called Hyde Amendment permanent. The Hyde Amendment, which is commonly added to annual health spending legislation, bars most federal dollars from being spent on abortions. Progressive Democrats strongly oppose the Hyde Amendment, and they would like to remove it from the annual spending bill for the Department of Health and Human Services.
• Pfizer on Thursday announced it is seeking authorization from the Food and Drug Administration for a covid vaccine for children ages 5 to 11. The agency has scheduled an advisory committee meeting already and a decision could come around Halloween. A decision on vaccines for children under 5, however, seems unlikely before the end of the year.
• The recent controversy over whether the U.S. should authorize so-called vaccine boosters has focused attention on the lack of good national data on covid’s effects. Much of the argument for those additional shots was based on studies from Israel and Britain because U.S. health officials have not been collecting the same level of data about covid cases and outcomes. That is partly a reflection of the decentralization of the U.S. health system.
• The Biden administration announced this week it is reversing a federal Title X rule that denied funding to organizations that counseled people about abortion or referred them to abortion providers. Planned Parenthood left the program after the Trump administration implemented that rule.
• Abortion is teeing up to be a big issue before the Supreme Court this term. The justices had already agreed to hear a case opposing a Mississippi law restricting most abortions after 15 weeks, but cases involving a controversial Texas law that denies abortions after six weeks appear bound for the high court soon, too.
• Abortion opponents are hoping the court will overturn the landmark Roe v. Wade decision legalizing the procedure. But that could also set the court up for a major backlash and complaints about its politicization.
• Biden has another key health opening in his administration: the director of the National Institutes of Health. But it doesn’t seem likely to be as difficult to fill as the head of the FDA, which the White House has still not offered a nominee for.

Also this week, Rovner interviews KHN’s Aneri Pattani, who reported the latest KHN-NPR “Bill of the Month” feature about two similar jaw surgeries with two very different price tags. If you have an outrageous medical bill, you’d like to send us, you can do that here.

Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read too:

Julie Rovner: The New York Times’ “A ‘Historic Event’: First Malaria Vaccine Approved by W.H.O.,” by Apoorva Mandavilli

Joanne Kenen: Vox.com’s “Why Merck’s Covid-19 Pill Molnupiravir Could Be So Important,” by Umair Irfan

Yasmeen Abutaleb: The Wall Street Journal’s “Why It’s So Hard to Find a Therapist Who Takes Insurance,” by Andrea Petersen

Sarah Karlin-Smith: The Washington Post’s “70 Years Ago, Henrietta Lacks’s Cells Were Taken Without Her Consent. Now, Her Family Wants Justice,” by Emily Davies

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KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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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 health care 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. 

Want to learn more, directly from Jared Walker?  Sign up for his next training, scheduled for Oct. 14. 

Here’s the transcript for this episode.  

“An Arm and a Leg” is a co-production of KHN and Public Road Productions.

To keep in touch with “An Arm and a Leg,” subscribe to the newsletter. You can also follow the show on Facebook and Twitter. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

To hear all KHN podcasts, click here.

And subscribe to “An Arm and a Leg” on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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This story can be republished for free (details).

We encourage organizations to republish our content, free of charge. Here’s what we ask:

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Have questions? Let us know at KHNHelp@kff.org

Matt Volz and son Thomas take a selfie while waiting for a covid test in Helena, Montana, on Sept. 22.(Matt Volz / KHN)

HELENA, Mont. — My unvaccinated 7-year-old son began hacking and sneezing in late September as the hospitals in our home state of Montana started buckling under the latest covid surge. I took him to get tested when his symptoms wouldn’t go away.

The cotton swab went up his nostrils and Thomas bucked out of my lap with a mighty snort, nearly ripping the 6-inch swab from the pediatrician assistant’s fingers. It came out bent, but the sample was usable, and as she put it away, I asked a question to which I already knew the answer.

“So we’re in quarantine?” She nodded. It would take about 72 hours to get the results, she said.

The next day, 4-year-old twins Anna and Karen started coughing and sneezing like their brother. They were already under orders to stay home after being exposed to a covid-positive classmate, but they, too, were slapped with a new quarantine while we waited for the test results.

We had already experienced two covid quarantines and summer camp closures in August. In September, our family accomplished a new feat in our pandemic journey: The twins entered a quarantine within a quarantine, running simultaneously to their brother’s quarantine.

For the parents of children too young to get vaccinated, the news that Pfizer and BioNTech deemed their vaccine safe and effective for children ages 5 to 11 is a light at the end of a seemingly never-ending quarantine tunnel. Remember those lockdowns that defined spring 2020 for everyone? We parents are still living them, in increments lasting up to 10 days. When we’re not in quarantine, we’re bracing for the next one.

Beagan Wilcox Volz works on her computer as daughters Karen (left) and Anna watch videos while quarantining at home in Helena on Sept. 24.(Matt Volz / KHN)

My wife, Beagan, and I now flinch every time we see a school number on our phones’ caller ID. Are they closing again? Will our bosses be understanding this time? Can we find part-time care at the last minute? Are we even allowed to bring in that outside help if we’re in quarantine?

But the record hospitalizations and spike in covid deaths put the problems of our confined — yet healthy — family in perspective. The same day my son was tested, Montana was among the top 5 states for new case rates and the governor sent National Guard troops to help hospitals bursting with covid patients. The 1,326 new covid cases reported by the state included 118 kids under age 10.

Our pediatrician’s office is part of the St. Peter’s Health system, which was implementing crisis standards of care to ration medical services. Several hundred feet from us at the doctor’s office, all eight intensive care beds in the main wing of the hospital were filled, six by covid patients.

Here we were, just three weeks into the school year, and we were drained. Beagan and I spent much of August and September trying to manage the kids and our jobs. How bad might it get when the cold weather forced us all back indoors?

To top it off, we discovered that the two kittens we adopted from the local shelter had ringworm. The fungal infection spread to the entire family and the dog.

My wife summed it up neatly: “I feel like a crappy parent, a crappy employee, a crappy spouse, a crappy pet owner. I just feel crappy.”

Children are much less likely than adults to get seriously ill or die from covid-19. But they make up about 15% of all covid cases, and the highly transmissible delta variant has led to a jump in child hospitalizations. Some children who get the disease may also develop “long covid” or the sometimes fatal multisystem inflammatory syndrome.

Despite the surge, it seems a lot of people in Helena and around the state have put the pandemic behind them. Maskless faces in indoor spaces, crowded events and low vaccination rates are the norm, aided by new state laws that stymie local health officials’ ability to implement common anti-covid measures.

I feel like an oddity when I’m one of the few masked patrons or employees at the grocery store, or my kids are the only ones masked at the children’s science museum. So I asked Dr. Lauren Wilson, head of the Montana chapter of the American Academy of Pediatrics, whether I was being too cautious.

Wilson said the parents of unvaccinated kids are right to be cautious, not just because their children might get covid, but because they could bring it home and spread it to vulnerable family members. It’s also important to balance protecting children with providing for their needs, particularly their mental health, she added.

That can be difficult when parents are experiencing “decision fatigue” from the scores of choices they face every day about their families’ safety, she said. It’s difficult to assess risks when so many people are ignoring public health recommendations.

Our wait for test results stretched from three days to five. On the last day, I wrote this essay between tea parties, breaking up fistfights, playing “Frozen” on the television for the umpteenth time and giving in to my son’s request to have potato chips for breakfast. The kids’ negative covid test results arrived near day’s end.

Then we found out 7-year-old son could soon join the ranks of the vaccinated if the Food and Drug Administration approves the Pfizer-BioNTech shot for his age group.

That will be a big day for us, along with the twins’ 5th birthdays in the spring. In the meantime, I’ve started to cough and sneeze. Considering the kids’ tests were negative, I think I’ll skip getting one myself — in hopes of breaking our quarantine streak.

Matt Volz:
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It’s remarkable that the reputation of the National Institutes of Health has remained mostly intact through the covid-19 pandemic, even as other federal science agencies, including the Food and Drug Administration and Centers for Disease Control and Prevention, have come under partisan fire.

That is in no small part due to NIH’s soft-spoken but politically astute director, Dr. Francis Collins. The motorcycle-riding, guitar-playing Collins announced Tuesday he will step down by the end of the year from his job as chief of the research agency, having served more than a dozen years under three presidents.

“No single person should serve in the position too long,” said Collins in a statement, and “it’s time to bring in a new scientist to lead the NIH into the future.” Collins, 71, said he plans to return to his lab at the National Human Genome Research Institute, which he led for 15 years, from 1993 to 2008. Under his leadership, the institute successfully mapped the human genome, and Collins helped shepherd through Congress legislation to protect the privacy of individuals’ genetic information.

The big question now is not just who will fill Collins’ big shoes at NIH, but whether the agency can maintain its status as a political favorite among members of both parties. Under Collins’ stewardship, NIH’s budget has increased by more than a third during a time of mostly flat federal health budgets, and political interference with biomedical research has been, if not nonexistent, at least mostly off the front pages. That’s in sharp contrast to the CDC, whose handling of the pandemic has drawn plenty of criticism under both Presidents Donald Trump and Joe Biden, and the FDA, which tallied its own covid missteps and remains without a nominated commissioner nearly 10 months into the new administration.

While Dr. Anthony Fauci, director of the NIH’s National Institute of Allergy and Infectious Diseases, has maintained a much higher profile than Collins and also courted controversy, most of that flak did not redound to NIH as a whole.

President Joe Biden praised Collins, calling him “one of the most important scientists of our time.” Noting Collins’ work on the human genome and his help launching the Obama administration’s work on precision medicine, the Brain Initiative and the National Cancer Moonshot effort, Biden said, “Millions of people will never know Dr. Collins saved their lives.”

Accolades for Collins flowed in from the scientific community as soon as news of his impending departure was announced. “For more than a decade Dr. Collins has provided exemplary leadership and stewardship as head of the NIH,” said the American Cancer Society Cancer Action Network.

And the praise from politicians was distinctly bipartisan. Sen. Richard Burr (R-N.C.) said in a statement that Collins “led the NIH capably and admirably, leaving it better prepared to meet the challenges of the 21st century.” House Majority Leader Steny Hoyer was no less effusive, calling Collins “one of our country’s greatest public servants, having spent his career working to improve the health of all Americans and promoting cutting-edge research that extends our understanding of the human body and how to heal it.”

It is notable that the relative lack of controversy during Collins’ tenure has been the exception, not the rule, for NIH over the past half-century. Starting in the 1970s, every biomedical advance, from in vitro fertilization to fetal tissue and stem cell research to the cloning of Dolly the sheep resulted in intense political fights and blaring headlines.

In the late 1990s, Republicans led by then-House Speaker Newt Gingrich decided to make science funding a priority and spearheaded a doubling of NIH’s budget, an effort Democrats happily joined. But after that doubling, a stagnant NIH budget caused cutbacks in university research, creating controversy of its own, which Collins had to manage.

Controversy comes with the territory. “Anytime there’s controversy in science, NIH is going to be involved,” said Mary Woolley, president and CEO of Research!America, a science funding advocacy group.

What has set Collins apart, said Woolley, is his ability to communicate to transcend that controversy, “both in ways unexpected, like singing and riding motorcycles, and more traditional ways,” like dealing with lawmakers.

Dr. Ross McKinney, chief scientific officer for the Association of American Medical Colleges, agreed. “He’s just done a dynamite job at being effective at communicating with both sides,” he said. “He’s good with scientists, he’s personally Christian and religious, so he can speak to that side, as well.”

Both Woolley and McKinney said they are confident there are plenty of good candidates to lead NIH, although neither would name any. But McKinney said he hopes the NIH doesn’t end up with a void at the top like the FDA. “I think the FDA precedent is concerning,” he said.

Still, Woolley said, Collins is leaving the NIH in good shape. “The next leader will benefit from what he has done,” she said.

HealthBent, a regular feature of Kaiser Health News, offers insight and analysis of policies and politics from KHN’s chief Washington correspondent, Julie Rovner, who has covered health care for more than 30 years.

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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.

The federal payments enriched many of the biggest, wealthiest systems while poorer hospitals serving low-income patients and rural areas struggled.

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.”

Jay Hancock:
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Jackie Fortiér, KPCC

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.

In September, Los Angeles County included those aides in its vaccine mandate, following a KPCC/LAist story that reported on the discrepancy.

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 health care, 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.

Landes said cases seem to be dependent on two variables: preexisting conditions and the amount of in-person intimate care that the developmentally disabled person needs.

“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.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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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.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Anna Maria Barry-Jester:
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@annabarryjester

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Helen Santoro

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.

Twenty-three states and Washington, D.C., include gender-affirming care in their Medicaid plans. But 10 states exclude such coverage entirely. In 2019, an estimated 152,000 transgender adults were enrolled in Medicaid, a number that has likely grown during the pandemic.

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 health care. 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.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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