Head-Scratching Over Newsom's Choice of Blue Shield to Lead Vaccination Push

KFF Health News, February 2, 2021

The insurer has thus far said little about how it plans to reorganize a gargantuan and complicated vaccination campaign.

This article was published on Monday, February 1, 2021 in Kaiser Health News.

By Bernard J. Wolfson

California Gov. Gavin Newsom, struggling to salvage a once-bright political future dimmed by his mishandling of the covid crisis, tapped nonprofit health insurer Blue Shield of California last week to allocate the state's covid vaccine.

The company has thus far said little about how it plans to reorganize a gargantuan and complicated vaccination campaign that has befuddled and frustrated public health officials and vaccine seekers alike.

The agreement with Blue Shield was made under an emergency authorization, circumventing the customary bidding process. Kaiser Permanente, California's largest health plan, will also assist in the effort under an emergency contract. (KHN is not affiliated with Kaiser Permanente.)

Blue Shield's job will be to develop and manage a network of providers to distribute and administer vaccines at numerous venues statewide, including mobile clinics, major vaccination sites and the homes of at-risk residents, according to details released by the state Monday. Blue Shield will also design a system of financial incentives to encourage providers to use their vaccine supply more quickly, with a particular focus on those disproportionately hit by the pandemic. And it will create a real-time data aggregation and reporting system.

Kaiser Permanente, beyond inoculating its 9 million members, will create and oversee at least two vaccination sites, in addition to other unspecified efforts, to vaccinate underserved communities.

Newsom hopes that replacing the patchwork of county-by-county efforts with a centralized system will accelerate the pace of vaccinations.

The vaccine rollout has been plagued by early stumbles, including confusing appointment systems; shifting rules on vaccine eligibility; long lines that have kept older people waiting for hours, leading some to abandon their quest and go home unvaccinated; and faulty data collection that left state officials unable to say whether Newsom had met his goal of administering 1 million doses in 10 days.

Some healthcare experts cautiously welcomed the new plan, saying Blue Shield could help bring more structure and efficiency to the enterprise of vaccinating California's nearly 40 million residents.

Blue Shield is the third-largest health insurer in California, after Kaiser Permanente and Anthem Blue Cross. It contracts with a large number of hospitals, medical groups, pharmacies and other providers across the state. Newsom is counting on the insurer's extensive web of relationships to help get vaccines out more quickly and effectively.

Since Blue Shield "has got an organization with a statewide footprint and knowledge of the geography and the population, it seems they could think through all the scheduling and logistics," said Glenn Melnick, a professor of health economics at the University of Southern California's Sol Price School of Public Policy.

A coalition of skeptical groups representing county and local health officials warned Newsom on Friday that his plan "threatens to eclipse our members' core local public health expertise and functions." Some health experts suspected the decision to bring in Blue Shield was related to the insurer's history as a major Newsom donor.

Here are answers to five key questions about Blue Shield's participation in the covid vaccination program:

1. Is Blue Shield up to the task?

Time will tell. Despite its experience and clout in the healthcare industry, Blue Shield has never attempted anything of such magnitude — with so much riding on it and so many eyes watching.

Skeptics note that Blue Shield's track record in delivering healthcare to its enrollees has not always been stellar. Its rollout of Affordable Care Act health plans in 2014 was beset by errors, and it has been fined by regulators for improper coverage cancellations and consumer grievance violations, among other things. In 2015, it lost its state tax-exempt status following a controversy over large premium hikes and its hefty financial reserves.

In 2019, the most recent year for which data is available, Blue Shield had the second-highest rate of consumer complaints — after UnitedHealthcare — among the nine largest California health plans regulated by the state's Department of Managed Healthcare. And it got the lowest possible score on access to care in the 2019-20 health plan ratings by the National Committee for Quality Assurance.

2. Was Newsom's decision politically motivated?

It's hard to say definitively without having been a fly on the wall, but Blue Shield is on very good terms with the governor.

It gave about $1 million to support Newsom's 2018 gubernatorial bid, according to filings with the California Secretary of State Office. Last year, the company contributed an additional $31,000 to Newsom's 2022 campaign for governor, as well as $269,000 to his ballot measure committee.

"The reality, I think, is that it reflects the tight relationship Blue Shield has built with Newsom, not its capabilities," said Michael Johnson, a former Blue Shield executive who resigned from the company in 2015 and is now one of its fiercest critics.

In addition, Blue Shield's CEO, Paul Markovich, was co-chair of Newsom's covid testing task force from March to June last year – experience that some healthcare experts cited as an asset in the insurer's new role.

Another possible factor in the governor's decision to shake things up is his political need to turn things around quickly, with an effort to recall him gaining momentum from the vaccination chaos.

3. Is Blue Shield well placed to accomplish the equitable distribution of vaccines to underserved communities that Newsom called "the North Star" of the new centralized system?

These communities are not among Blue Shield's core constituency. It has a small presence in Medi-Cal, the state-funded insurance program for people with low incomes — and only in Los Angeles and San Diego counties. But it does have relationships with numerous hospitals and other providers that serve Medi-Cal patients. It will also need to collaborate with the state's counties.

"It's critical that Blue Shield be required to work hand in hand with local public health jurisdictions to reach vulnerable populations that do not have the same level of access to traditional healthcare," said Sara Bosse, director of Madera County's Department of Public Health.

4. What could have motivated Blue Shield to tackle such an onerous assignment?

Its payment from the state will be at cost, so there's no apparent profit motive. Though Blue Shield could theoretically leverage its vaccine decision-making power to the advantage of its own business, healthcare experts doubt it would behave in such a cynical manner.

"Our goal is to do all we can to help overcome this pandemic, and it is our commitment to do that work at cost without making a profit from the state," Blue Shield said in a news release Friday.

Melnick said he knew of no other health plan in the country that has jumped in to help public officials with testing or vaccinations. If Blue Shield succeeds, "it could be an answer for a lot of states and could put pressure on other plans to step up," he said. By the same token, Blue Shield will probably catch the blame if vaccine supply shortages continue.

Johnson, the former Blue Shield executive, suggested a motive other than pure selflessness. "I think the biggest value to Blue Shield is the prestige of it," he said. "It implies Blue Shield has the skill and integrity to be entrusted with something this vital to tens of millions of people."

5. How will Blue Shield's results be measured?

It shouldn't be too difficult to determine whether the insurer is meeting two key goals the state set for it: to speed up the pace of vaccinations and to focus in particular on underserved communities. Both can be measured.

The bar for success is pretty low, Johnson said. "The whole thing has been managed so disastrously," he said, "that it wouldn't be difficult for Blue Shield to improve on the state's performance thus far and come out of this looking like it did a good job."

California Healthline political correspondent Samantha Young and KHN correspondent Anna Almendrala contributed to this report.

Bernard J. Wolfson: bwolfson@kff.org, @bjwolfson

Opinion: With Demand Far Exceeding Supply, It Matters That People Are Jumping the Vaccine Line

KFF Health News, February 2, 2021

For weeks, Americans have watched those who are well connected, wealthy or crafty "jump the line" to get a vaccine, while others are stuck, endlessly waiting on hold to get an appointment.

This article was published on Tuesday, February 2, 2021 in Kaiser Health News.

By Elisabeth Rosenthal

The Biden administration's much-needed national strategy to end the covid-19 pandemic includes plans to remedy the chaotic vaccination effort with "more people, more places, more supply." The Federal Emergency Management Agency will open more vaccination sites, the government will buy more doses, and more people will be immunized. Still, by all estimates, the demand for vaccines will far exceed the supply for months to come.

For weeks, Americans have watched those who are well connected, wealthy or crafty "jump the line" to get a vaccine, while others are stuck, endlessly waiting on hold to get an appointment, watching sign-up websites crash or loitering outside clinics in the often-futile hope of getting a shot.

To eliminate this knock-out-your-neighbor race to score a vaccine, the administration needs to find ways to build trust in the system. It will take more than "more people, more places, more supply" to end the Darwinian competition and restore confidence and order.

That's in part because, desperate to end their own pandemic nightmare, many of our most respected institutions and politicians have behaved badly. Of course, hospitals have performed heroics during the pandemic — turning orthopedic wards into covid intensive care units, canceling elective surgeries, bringing retired healthcare workers back to help, all the while losing thousands of staff members to the virus. But some also have behaved selfishly during the vaccine rollout.

When the vaccine was released in December, the Centers for Disease Control and Prevention recommended that healthcare personnel and nursing home residents receive the first doses. It was pretty clear whom the agency had in mind for "healthcare personnel": those who deal directly with patients, including doctors, nurses, technicians, janitors and the people who deliver meals, along with those who might come into contact with the virus, like security guards and laundry staff, as part of their jobs.

But many hospitals interpreted the recommendation broadly, inoculating their entire staff — public relations departments, administrators, programmers, laboratory scientists and, sometimes, their boards. They offered vaccines to psychiatrists who were seeing their patients on Zoom. They vaccinated radiologists who were reading films at home. Some of those immunized were at the upper end of the medical income totem pole, people who had sat out the pandemic at country homes.

Many hospitals pay no taxes because the care they provide benefits their communities. In their vaccine rollout, many of those were not thinking about their communities, only about themselves.

That behavior set a precedent for the national chaos that followed. "From soup to nuts, the whole thing has fallen apart," said Arthur Caplan, one of the country's leading medical ethicists. What Caplan called "unfair priority" left him "incredibly irritated"; ethics were often absent from the algorithm. "Once you've lost public confidence in the fairness of the process, it undermines willingness to follow the rules," he said.

Once random people working remotely got shots, those outside medical centers played whatever cards they had, too. Therapists who were teleworking claimed eligibility. Politicians and their spouses — sometimes former spouses — got vaccines.

People offered donations in exchange for vaccinations. Health officials and private doctors tipped off friends about when new vaccine doses would be released. On screening forms, people checked the boxes needed to get a vaccination appointment and in some places were immunized even after their duplicity was discovered.

Pity the rule-followers: Many older Americans who are not tech-savvy or lack internet access have been unable to get slots. It might be theoretically possible to sign up by phone, but by the time you get through, the newly released appointments may be gone. Those without a child or grandchild to help secure an appointment could be out of luck.

Hospitals, clinics and vaccination sites have explained away bad behavior by saying they didn't want to waste unused vaccines. Many have experienced higher-than-expected refusal rates from those expected to get a shot.

I don't blame the lucky recipients; after all, hospitals would just offer the unused vaccine to the next person on the list. But I do blame whoever it was in the hospital hierarchy or the health clinic who decided to distribute and redeploy vaccines this way.

If there were unexpected extras, couldn't hospitals have instead walked those doses to patients in the geriatric, hypertension or diabetes clinics? Or offered them to one of the many nursing homes and assisted living facilities whose workers and residents have still not been vaccinated, though they, like healthcare personnel, were the Centers for Disease Control and Prevention's top priority?

Gregg Gonsalves, who is 57, HIV-positive and an epidemiologist at the Yale School of Public Health, said he faced an ethical quandary when he was notified of his eligibility for the vaccine; he was unsure whether to sign up. His 86-year-old mother has not gotten one yet.

"Ethicists are saying, 'if offered, take it,' but stepping in line in front of my own mother? I know speed is of the essence in getting shots into arms, but this is entrenching gross inequities," Gonsalves said. (He declined to say what his decision was.)

The problem is that, often, people are not really being "offered" the vaccine; in some cases, they are grabbing it through position, influence or deceit. They are, in the abstract, taking it from someone perhaps more in need — a subway worker, a high-risk patient, maybe even their own mother.

Now, the new administration is coordinating with states to set up more mass vaccination sites. That's great. But the United States has allowed its public health system to become a hollowed-out underfunded mess, and many vaccination clinics are being run and staffed by contracted private companies. And the private sector has so far proved too vulnerable to private favoritism.

Until the supply is sufficient, the government needs to give the shots to the people and places that need it most, and find ways to ensure that the plan is followed; the system could prioritize ZIP codes that have high covid-19 infection rates or target low-income populations who might otherwise have a difficult time securing an appointment.

In Britain, citizens are notified, according to risk group, when it is their turn to book an appointment. They don't have to play knock-out-your-neighbor to score one. We shouldn't either.

Elisabeth Rosenthal: erosenthal@kff.org, @rosenthalhealth

Food Guidelines Change But Fail to Take Cultures Into Account

KFF Health News, February 1, 2021

Ethnic variations have been suggested for years, but there is still little guidance given to Americans of different backgrounds on how to eat more healthfully.

This article was published on Monday, February 1, 2021 in Kaiser Health News.

By Chaseedaw Giles

The U.S. Department of Agriculture and the Department of Health and Human Services have once again developed new food guidelines for Americans that urge people to customize a diet of nutrient-dense food. For the first time, they make recommendations for infant nutrition and for different stages of life.

But, as in past iterations, they lack seasoning. They do not acknowledge the nuances of culture and ethnicity at the heart of how Americans feed themselves.

Congress requires a revision of these guidelines every five years to ensure they reflect the best available science and respond to the general population’s health needs.

Ethnic variations have been suggested for years, but there is still little guidance given to Americans of different backgrounds on how to eat more healthfully.

“There’s different ways you can be racist,” said Esosa Edosomwan, a certified nutrition specialist and behavioral coach in Washington, D.C. “You can be racist by omitting people, by making guidelines that only cater to a specific group.” Edosomwan — a Nigerian American also known as the Raw Girl — began her nutrition journey while trying to find a diet that would help alleviate persistent acne. She found a raw food class and began writing about her food-as-medicine reeducation on her blog, Raw Girl Toxic World.

“I was trying to figure out what I could become that would allow me to treat people with nutrition,” she said. “I saw mostly white women in this field that were celebrity nutritionists.”

“A white dietitian, she’s probably going to tell you to have some Greek yogurt with a handful of almonds and a serving of protein the size of your fist, when what you really want is egusi soup,” Edosomwan said, referring to the West African dish made from the ground, nutrient-dense egusi seed, vegetables and meat or fish. Food is a big part of culture, and you can’t dismiss where a client comes from, she said. Her clients are encouraged to cook within their culture, but to make changes to ingredients when needed to improve nutritional quality.

“These guidelines are completely incompatible with us achieving our best health,” Edosomwan said of the government guidelines. Statistics bear this out. According to a 2017 JAMA study, nearly half of all U.S. deaths from heart disease, stroke and Type 2 diabetes may be attributed in part to poor diet. These health conditions disproportionately affect people of color. For instance, 11.7% of Black people, 12.5% of Hispanics and 9.2% of non-Hispanic Asians have been diagnosed with diabetes, versus 7.5% of non-Hispanic whites, according to the 2020 National Diabetes Statistics Report.

The USDA boasts a long history of providing “science-based dietary guidance to the American public” and frequently revising it. It goes back to before World War II. An attempt to correct overeating came with the “Food Pyramid” — first published in 1992. The recommendations have more recently been branded simply as “My Plate,” with an app that can be downloaded to any mobile device. But simplifying the recommendations may make them less relevant.

“Culture is everything,” said Inez Sobczak, certified nutritionist and owner of Fit-Nez in Arlington, Virginia. Sobczak was born in Miami to Cuban refugees and has been a nutritionist for 15 years, specializing in weight loss, hormone management and emotional and crisis eating.

While USDA guidelines can’t account for every food culture, Sobczak said, they could be more inclusive. And while she can’t create a new food pyramid overnight — it’s a more complicated process than one would think — she tries to teach people of color how to eat better.

Oldways, a Boston-based organization, has been trying for decades. It first developed a Mediterranean food pyramid in 1993 and has since created charts for African, Latin American and Asian diets, as well as ones for vegetarians and vegans. It also offers classes, such as their six-week Taste of African heritage program. Kelly Toups, director of nutrition at Oldways, said the organization also participates in sessions with the USDA. But not much has changed.

“It would be great to see more cultural representations more explicitly shown in the guidelines,” she said.

Why has it never happened? Partly because the process is elaborate: A government committee of about 20 scientists and health experts study the National Health and Nutrition Examination Survey. The survey attempts to discover what people are eating and how healthy they are. The interviews, conducted in either English or Spanish, leave out Americans who speak other languages.

Next, the committee conducts “food pattern modeling” by looking at different food groups, the nutrients they provide and how much of each group is needed at each stage of life to establish recommendations.

These recommendations are set by age and gender but do not consider variables such as ethnicity, geographic location or access to healthy foods. “If I had to guess, you’re mostly looking at things that are available in typical grocery stores in the U.S.,” said Sarah Reinhardt, the lead food systems and health analyst in the food and environment program at the Union of Concerned Scientists.

In July the USDA released a whopping 835-page scientific report that formed the basis for the 2020-2025 Dietary Guidelines, released at the end of December.

Wait, there’s more. The federal committee also examines piles of food research. But it cannot evaluate research that isn’t available. Vegetarian and Mediterranean diets have been rigorously examined, but not many studies are looking at West African or Native American diets, for example.

The USDA acknowledges this gap. In the 2020 report, the members highlighted the issue. “Nutrition science would benefit from scientists in the field conducting primary research in more diverse populations with varying age groups and different racial, ethnic and socioeconomic backgrounds,” a USDA spokesperson said.

Still, the food industry dominates and guides the discussion. Due to a lack of public funding, Reinhardt said, a lot of nutrition research is funded by industry. “Science isn’t unbiased. It really depends on who is setting the agenda,” she said.

One issue is that the African American diet isn’t a monolith. “There are many immigrants in this country who are Black but hail from different cultural backgrounds,” Edosomwam said.

For instance, the African diet involves lots of tubers — things like yams and cassava, she said. But some African American diets, especially those traced back to slavery, are based on the “soul food” concept, which comes from the practice of making meals from leftover scraps that slave owners would allow them to eat — foods such as pig intestines, called chitterlings.

“Cultural foods and traditions matter,” she said. But part of the challenge is helping people “reimagine these dishes to make them healthier by changing the ingredients and creating new traditions.” Unfortunately, she added, “there’s no plant-based substitute for chitterlings.”

'An Arm and a Leg': Tips for Fighting Medical Bills From a Former 'Bad Guy' Lawyer

KFF Health News, February 1, 2021

"An Arm and a Leg" is a podcast about healthcare costs, and its second season is co-produced by KHN.

This article was published on Monday, February 1, 2021 in Kaiser Health News.

By Dan Weissmann

Can't see the audio player? Click here to listen.

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.

Lawyer Jeff Bloom used to be the person whom medical providers and debt collectors would hire to represent them in court. "I was a bad guy, for sure," he said.

Then, a few years ago, he switched sides. Bloom now represents consumers and, in this episode, shares what he knows. He said consumers have more rights than they may realize, although enforcing those rights may be tough.

One other piece of advice:

"Be a good guy. Don't be threatening. Don't yell at people," Bloom said. "Judges are your audience. And if you're a good guy, they may help you out."

Here's a transcript for this episode.

"An Arm and a Leg" is a co-production of Kaiser Health News 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 healthcare system, the producers would love to hear from you.

To hear all Kaiser Health News podcasts, click here.

Older Adults Without Family or Friends Lag in Race to Get Vaccines

KFF Health News, February 1, 2021

Elders who can drive — or who can get other people to drive them — are traveling to locations where vaccines are available, crossing city or county borders to do so.

This article was published on Monday, February 1, 2021 in Kaiser Health News.

By Judith Graham

A divide between "haves" and "have-nots" is emerging as older adults across the country struggle to get covid-19 vaccines.

Navigating Aging focuses on medical issues and advice associated with aging and end-of-life care, helping America's 45 million seniors and their families navigate the healthcare system.

Seniors with family members or friends to help them are getting vaccine appointments, even if it takes days to secure them. Those without reliable social supports are missing out.

Elders who can drive — or who can get other people to drive them — are traveling to locations where vaccines are available, crossing city or county borders to do so. Those without private transportation, are stuck with whatever is available nearby.

Older adults who are comfortable with computers and have internet service are getting notices of vaccine availability and can register online for appointments. Those who can't afford broadband services or don't use computers or smartphone apps are likely missing out on information about vaccines and appointments.

The extent of this phenomenon has not been documented yet. But experts are discussing it on various forums, as are older adults and family members.

"I'm very concerned that barriers to getting vaccines are having unequal impact on our older population," said Dr. XinQi Dong, director of the Institute for Health, Health Policy and Aging Research at Rutgers University.

Disproportionately, these barriers appear to be affecting Blacks and Hispanic elders as well as people who are not native English speakers; older adults living in low-income neighborhoods; seniors who are frail, seriously ill or homebound; and those with vision and hearing impairments.

"The question is 'Who's going to actually get vaccines?' — older adults who are tech-savvy, with financial resources and family members to help them, or harder-to-reach populations?" said Abraham "Ab" Brody, an associate professor of nursing and medicine at New York University.

"If seniors of color and people living in poor neighborhoods can't find a way to get vaccines, you're going to see disparities that have surfaced during the pandemic widening," he said.

Preliminary evidence from an analysis by KHN indicates this appears to be happening. In 23 states reporting vaccine data by race, Blacks are being vaccinated at a far lower rate than whites, based on their share of the population. The data on Hispanics suggests similar disparities but is incomplete. 

Although the data is not age-adjusted, Blacks and Hispanic seniors have been far more likely to become seriously ill and die from covid than white seniors during the pandemic, other evidence shows.

Myrna Hart, 79, who has diabetes and high blood pressure and lives in Cottage Grove, Minnesota, a southern suburb of St. Paul, is afraid she'll be left behind during the vaccine rollout. Hart, who is Black, is eager to get a shot, but she can't travel to two large vaccination sites for seniors in Minneapolis' northern suburbs, more than 30 miles away.

"That's too far for me to drive; I don't know my way, and I could get lost," she said. "If they have a handful of people who look like me in those places, I would be surprised. I wouldn't feel safe going there by myself."

Family members can't give her a ride. Hart's husband is in a skilled nursing facility, receiving rehabilitation after having a leg amputated due to diabetes. Her son is in the hospital, with complications from kidney disease. A daughter lives in Westchester County, New York.

So far, Hart has had no success getting an appointment online at smaller, closer vaccine locations.

"I don't know how much I can endure this," she said, her voice breaking, as she described her fear of catching covid and her frustration. "I'm afraid they're going to run out [of vaccine] before they get to people my age, now that they've changed the plan to include 65-year-olds who are jumping ahead of us."(Like many states, Minnesota widened eligibility to people 65 and older in mid-January, following recommendations from the federal government.)

Although Hart, a former accountant and bookstore owner, knows her way around computers, many older adults don't.

According to a new survey by University of Michigan researchers, nearly 50% of Black seniors and 53% of Hispanic older adults did not have online "patient portal" accounts with their healthcare providers as of June 2020, compared with 39% of white elders.

What's more, a significant portion of Black and Hispanic older adults lack internet access — 25% and 21%, respectively, according to the Census Bureau.

"It's not enough to offer technological solutions to these seniors: They need someone — an adult child, a grandchild, an advocate — who can help them engage with the healthcare system and get these vaccines," said Dr. Preeti Malani, director of the University of Michigan's National Poll on Healthy Aging.

In Birmingham, Alabama, Dr. Anand Iyer, a pulmonologist who specializes in caring for older adults, runs a clinic for more than 200 indigent patients with various types of chronic lung disease — conditions that put them at risk of becoming seriously ill if they're infected with coronavirus. Seventy percent of his patients are Black, and many are elderly.

"I would estimate 10% to 20% are at risk of missing out on vaccines because they're homebound, live alone, don't have transportation or lack reliable social connections," he said. "Unfortunately, those are the same factors that put them at risk of poor outcomes from covid."

Every week, he gets a call from a 90-year-old Black patient who lives alone in Tuskegee with chronic obstructive pulmonary disease, heart failure, cancer and severe arthritis. "She's old, but she's resilient and she keeps me posted on what's going on," Iyer said.

To the doctor's knowledge, this patient doesn't have children, other family members or friends to help her; instead, she relies on a handyman who comes around every so often. "How in the world is she supposed to get the vaccine?" he wondered.

Kei Hoshino Quigley, 42, of New York City, knows that her parents — Japanese American immigrants, who have lived with her since last March — couldn't have managed without her help.

Although Quigley's 70-year-old father and 80-year-old mother speak English, they have heavy accents and "it can be very hard for people to understand them," she said.

In addition, Quigley's father doesn't know how to use computers, and her mother's eyesight isn't good. "For older people who don't speak English as their native language and who are intimidated by the computer, the systems that have been set up are just nuts," Quigley said.

Knowing they couldn't navigate vaccine registration systems on their own, Quigley spent hours online trying to secure appointments for her parents.

After encountering a host of problems — frequent error messages, information she inputted suddenly getting wiped out on vaccine registration sites, calendars with disappearing-by-the-second appointments, incorrect notices that her parents didn't quality — Quigley arranged for her mother to be vaccinated in mid-January and for her father to get his first shot a few weeks later.

Language issues are also a significant hurdle for older Hispanics, who "are not being offered information on vaccines in a way they understand or in Spanish," said Yanira Cruz, president and chief executive officer of the National Hispanic Council on Aging.

"I'm very concerned that older adults who are not fluent in English, who don't have a family member to help them navigate online, and who don't have access to private transportation are going to be left out" during this rollout, she said.

None of the older adults living in two low-income housing complexes run by her organization in Washington, D.C., and Garden City, Kansas, have received vaccines, Cruz said. "We should be bringing the vaccines to where seniors live, not asking them to take a bus, expose themselves to other people, and try to find their way to a clinic," she said.

Nothing can substitute for a friend or family member determined to make sure an older loved one is protected against covid. Joanna Stolove has played that role for her father, 82, who is blind and has congestive heart failure, and her mother, 74, who has Lewy body dementia.

The couple lives in Nassau County on New York's Long Island and receives 40 hours of care at home each week.

Stolove, a geriatric social worker, took time during work to try to get her father an appointment, but many people don't have that luxury. She works at a naturally occurring retirement community in Morningside Heights, a diverse neighborhood on the Upper West Side of Manhattan.

With substantial effort, Stolove secured an appointment for her father at a large drive-in vaccine site on Jones Beach on Jan. 26; her sister found an appointment for her mother there in late February. At work, where many of her clients live alone and don't have family members or friends whom they can rely on for help, she counsels them about vaccines and tries to find appointments on their behalf.

"I have so many advantages in assisting my parents," Stolove said. "Without help from someone like me, how can people find their way through this?"

Judith Graham: khn.navigatingaging@gmail.com, @judith_graham

Tampa's Mayor vs. a Covid-Era Super Bowl

KFF Health News, February 1, 2021

Eleven months into the pandemic, Tampa Mayor Jane Castor feels the city and the NFL have learned enough to hold the event safely — though it will not be exactly normal.

By Phil Galewitz

This article was published on Monday, February 1, 2021 in Kaiser Health News.

With its lively music scene and Ybor City historical district full of bars and restaurants, Tampa has a nightlife hard to beat anywhere in Florida.

The city will have a big reason to party on Sunday — as the site of Super Bowl LV and the first city to host its own football team, the Tampa Bay Buccaneers, in the championship game.

The expected arrival of thousands of exuberant fans and the usual celebrations that mark the Super Bowl would seem to be a logistical headache for Mayor Jane Castor, who sought unsuccessfully last year to close bars in the city to stop the spread of covid-19 and has clashed with the state's Republican governor about the wisdom of rapidly opening up.

But 11 months into the pandemic, she feels the city and the National Football League have learned enough to hold the event safely — though it will not be exactly normal.

"We are climbing up on the world stage and one thing I can guarantee you is Tampa Bay is going to dance like we've never danced before," she said at a recent press conference. "We are making sure this is a safe event for everyone."

Castor said she supports the NFL's decision to allow 22,000 spectators at the Super Bowl — including 7,500 health workers who have received both doses of the vaccine. The Raymond James Stadium in Tampa has a capacity of 75,000. During the regular season, the stadium allowed about 14,000 fans.

And she said she is pleased the NFL and the Tampa Bay Super Bowl Host Committee limited official events connected with the game to outdoor activities. The Super Bowl Experience, a seven-day event that includes live music, food, beverages and football themed activities, is being held at multiple parks along the 2.7-mile Tampa Riverwalk.

Nonetheless, the city will continue to enforce its face mask ordinance inside bars through the week, said Castor's spokesperson. While Gov. Ron DeSantis has not allowed the local government to fine customers who don't mask up, it can penalize business owners for failure to require patrons to wear masks.

On Thursday, Castor signed an executive order mandating the use of face coverings outdoors in areas downtown and near the stadium designated for events tied to the Super Bowl.

Face masks will be required to attend the game, as well as for all those passing through Tampa International Airport. The airport is offering covid testing for any visitors who request it.

To be sure, many people in the city are still bucking the guidance to wear masks. City and county officials continue to look for ways to motivate more compliance and the Hillsborough County commission in December said that only people who are seated and eating or drinking in indoor bars or restaurants can remove their masks.

In an interview late last year, Castor, a former police chief, said the city has made the situation work and credited businesses with enforcing masks for employees and customers. "We are very happy with compliance," she said. "It's unusual to see people without masks inside."

Tampa, a city of 400,000, has had more than 57,000 covid-19 cases, according to state data. That places the city fourth in the state behind Miami, Orlando and Jacksonville. About 1,300 people have died of covid-19 in Hillsborough County — nearly 40% of whom were nursing home staffers and residents.

Castor last year said she would prefer to see the bars closed to protect people from transmitting the COVID-19 virus. It didn't happen.

Gathering in bars creates a "veritable petri dish for infection," she said. Her reasoning: People are in close quarters, unable to physically distance, and talk over one another loudly while consuming alcohol, which further impairs efforts to curb infections.

During the summer, she unsuccessfully lobbied the commissioners of Hillsborough County to use federal covid relief money to pay bars to stay closed. The county controlled the CARES Act funding that came from the federal government.

Then Castor's efforts to shut bars were stopped after Florida Gov. Ron DeSantis in September took that power away from local governments, along with their ability to enforce mask mandates against customers.

Florida ordered all bars and breweries to close from March to September, except for three weeks in June. DeSantis reopened bars in September but only to 50% capacity. Within weeks of his actions, the daily number of new infections across Florida doubled and then tripled.

Castor, a Democrat who switched from the Republican Party in 2015, said the governor should have left decisions on the pandemic to city and county leaders. Nonetheless, she said she's found other ways to fight the spread of the virus.

She used social media, along with the help of health workers and professional athletes, to send the message to residents that they should wear masks and stay physically distanced from others.

"We are doing cautiously OK," Castor said in a recent interview.

Since the pandemic led to restrictions on people gathering, the city has canceled or rescheduled many events. This includes the annual pirate-themed Gasparilla parade and festival, which usually attracts hundreds of thousands of people; it's been moved from January to mid-April.

Castor is confident city residents will act responsibly.

"While I am aware of covid fatigue, if we can keep this up for another couple of months, we will see the effect of the vaccine and come out from under this and save a lot of lives in the process."

She is confident that the Super Bowl can go on, despite concerns about the spread of covid. "This is our opportunity to put our best foot forward on the world stage," she told reporters, promising that the Buccaneers "will be the first team in NFL history to hoist the Lombardi trophy in our own backyard."

Phil Galewitz: pgalewitz@kff.org, @philgalewitz

How a Bounty of Vaccines Flooded a Small Hospital and Its Nearby College

KFF Health News, February 1, 2021

The twists and turns of how Hillsdale Hospital got more doses than it could initially give away speaks to the ad hoc, chaotic nature of the vaccine distribution process nationally.

This article was published on Monday, February 1, 2021 in Kaiser Health News.

By Julie Appleby

When administrators at Hillsdale College, a conservative liberal-arts school in Michigan, heard its local hospital didn't have a way to store the Pfizer-BioNTech covid vaccine, they offered the use of its science department's ultra-low temperature freezer. The vaccine must be stored at minus 94 degrees Fahrenheit.

With that help, the small hospital — employing about 400 — was able to receive vaccines from the state: 1,950 doses in late December, more than twice what it requested, according to the hospital CEO.

Two weeks later, college faculty, staffers and administrators were among 900 people who received vaccinations at an on-campus clinic run by Hillsdale Hospital, even though college workers were not in the state-recommended priority groups eligible to get the vaccine in Michigan. The clinic was also open to faculty at the local beauty college.

Meanwhile, the number of doses allocated to the public health department of Hillsdale County, home to 46,000, was only 400, leaving the department scrambling to try to vaccinate front-line health workers in the region.

The hospital's willingness to vaccinate Hillsdale College faculty outside of recommended state guidelines following the loan of a refrigerator comes amid growing concern nationally that younger, healthier, more privileged or merely lucky people can "jump the line" while others in the priority groups can't get shots.

The twists and turns of how Hillsdale Hospital got more doses than it could initially give away speaks to the ad hoc, chaotic nature of the vaccine distribution process nationally, in which state, county and local officials complain about not knowing week to week how many doses they will receive to dole out. Some places initially got more than they needed, while others, like the Hillsdale County health department, received far less.

Decisions on who gets a dose often fall to local officials including, as in the case of Hillsdale, the hospital CEO, who first tried to get all front-line health workers vaccinated, then held another clinic for which he pegged eligibility to occupations with exposure to the public, such as pharmacists, hospice workers and educators.

Hillsdale College's staff members were on the list. That was surprising — raising some eyebrows — because the school's leaders have strongly opposed Democratic Gov. Gretchen Whitmer's closure of in-person classes, hosted an in-person graduation in defiance of state mandates against large gatherings and reportedly were prepared to go to court if Michigan extended campus closure rules into this spring. The student newspaper had an opinion piece this fall cautioning against the rush to a vaccine as a threat to liberty and health. The school garnered national attention in September when its Washington, D.C., campus, hosted a conference in Virginia at which then-attorney general William Barr compared covid closure rules to slavery.

It Started with the College's Freezer

Set amid the rolling hills of south-central Michigan about 90 minutes from Detroit, Hillsdale is a small town whose largest employers are the college, with about 800, and Hillsdale Hospital, the county's only hospital, with 47 beds, along with a 40-bed skilled nursing facility and about 400 full- and part-time employees.

The college held in-person classes for much of the year, requiring masks only in public spaces inside buildings, but professors could request students wear them in class.

As of Thursday, Hillsdale County has recorded more than 3,000 since the pandemic began, with 68 deaths.

Around the time Whitmer closed all campuses to in-person classes in November as cases spiked, there were 76 active cases at the college and 179 people were in contact isolation, the school paper reported.

Hillsdale Hospital had initially requested 800 doses of the Moderna vaccine from the state health department, said Jeremiah J. Hodshire, the hospital's president and CEO.

The Moderna product does not require ultra-cold storage.

Once the hospital secured the use of the college science department freezer, it modified its application, requesting instead the Pfizer product, which comes as 975 doses packed inside special ultra-cold transport containers, Hodshire said.

To officials' surprise — and without explanation — the hospital received two shipments of 975 doses of the Pfizer vaccine, meaning they had lots leftover.

"We were concerned," Hodshire said, and called state officials for an explanation, but ultimately kept them.

Many localities have complained of the unpredictability of these precious shipments from the federal government to the states and on to the localities, with most places getting far less than they need or requested.

What If They Gave a Vaccine and Nobody Came?

With a generous supply to dispense, the hospital faced another distribution dilemma. In an area of the country where many people are skeptical about covid, vaccines and government, there wasn't a throng of vaccine takers.

Though the hospital in late December first offered vaccines to its 400 employees, as well as local doctors, dentists, nursing home staffers and their residents, turnout was low. Only about 400 doses were given. Hodshire received his vaccination, he said, after all the workers at his hospital who wanted one received a shot.

There are "a lot of nay-sayers in the community," said Hodshire, who used his weekly podcast and Facebook Live events to assure listeners the vaccines were safe. Every time, he said, "we get people saying, 'You are government agents, you are evil.'"

For the approximately 1,500 doses left, Hodshire arranged a vaccination clinic at a large conference hall at the college — not far from the fridge — and staffed by hospital personnel, along with an assist from the National Guard and volunteers from the small local health department.

He invited optometrists, pharmacists, and K-12 educators. But he also added a group not specifically included in the state priority list for the next phase: higher education employees, including those from the local beauty college — not based on age but, he said, on whether they had direct dealings with students or families. (The state, meanwhile, was about to move to add seniors to its priority list.)

Hodshire pointed to federal guidelines that say groups can overlap to ensure efficient distribution of available vaccine supplies.

More than 200 higher education staff members received shots from that batch of 1,500. No students were vaccinated, a college spokesperson said in an email.

"There was no quid pro quo" for use of the refrigerator, said Hodshire, 45; the goal was to find demand to meet supply.

The college, he said, had made no secret of its intent to revive on-campus classes, "whether the government allowed them to or not." Leaving college staff members to mingle with students on campus and off, without an opportunity for vaccination, "would have been egregious on my part."

The hospital, Hodshire said, shared those plans with the state and received no pushback.

Michigan Department of Health and Human Services spokesperson Lynn Sutfin said in an email that the agency does not collect or approve plans from hospitals about vaccination efforts.

But, she added, "we do not want providers to waste vaccine and would rather they provide vaccine to someone outside of the prioritization groups as opposed to losing doses."

Even after the early January clinic at the college, the hospital had 340 doses left.

So, it set another clinic for late January, offering sign-ups to day care workers, bank employees, clergy and grocery clerks — again, with a requirement that all be involved in public-facing positions.

At the same time, the country's health department was having the opposite experience — struggling with scarce supplies to vaccinate those in the first eligibility group, healthcare workers. Later in the month, the health department opened eligibility to the state's next priority group, which included other essential workers and seniors, resulting in jammed phone lines and fully booked appointments.

All 400 of its initial allotment of vaccines were from Moderna, because the health department does not have an ultra-cold storage freezer, said the county's health officer Rebecca Burns.

"The hospital hasn't opened [vaccination clinics] to 65 and older seniors," Burns said. "If they were to do so, they would have a huge response."

Moving Forward

At the hospital's late January vaccination clinic, 50 healthcare workers who sat out the first round stepped forward for their shots.

Only then did the facility expand sign-ups to those 65 and up for the remaining 225 slots, which were left after interested clergy, day care and other retail workers signed up.

"They filled within 12 minutes of registration going live," wrote hospital spokesperson Rachel Lott in an email.

For the last full week in January, the county health department learned from the state that it would get 300 more vaccine doses, Burns said. The hospital would get 100 doses, this time of the Moderna vaccine, Hodshire said. It plans to distribute them at a joint clinic with the county health department set for an upcoming weekend.

"Moving forward, we are going to be partnering with them to serve all the  eligible populations as we have vaccine available," Lott wrote.

Julie Appleby: jappleby@kff.org, @Julie_Appleby

Pandemic Sends a Couple Into Indefinite Long Distance Though Just Miles Apart

KFF Health News, January 30, 2021

Suzan Mubarak and Mitch Domier live a few miles apart in Bozeman, Montana, but drive-by visits are the closest the couple has been for nearly 10 months.

This article was published on Friday, January 29, 2021 in Kaiser Health News.

By Katheryn Houghton

Every Sunday afternoon, Suzan Mubarak keeps an eye on her phone. That is when her boyfriend will call to let her know he’s outside her house for their weekly wave.

Mubarak, 31, and Mitch Domier, 43, live a few miles apart in Bozeman, Montana, but those drive-by visits are the closest the couple has been for nearly 10 months. The pandemic largely locked down the homes for adults with developmental disabilities where they each live, limiting them to video chats and the occasional drive-by.

During those Sunday visits, Mubarak’s eyes show she’s grinning behind her mask. Domier typically leans out the passenger window of the group home’s van. Domier’s housemates, who like to come along for the drive, wave in the background. If it’s not too cold, Mubarak makes her way to the invisible barrier that must separate them by 6 feet. They don’t talk long — that’s saved for their nightly video chats, the only place they see each other’s face without a mask.

The couple met at their group homes’ work center, a hub that offers vocational training and contract work for businesses in town. Mubarak liked that Domier teased anyone in the room and she thought he was cute. Domier tries to keep a straight face when he makes jokes — which is often — but he has a booming laugh. And Domier noticed Mubarak right away even though she comes off as shy.

“She’s nice,” Domier said, adding they’re also on the same page when it comes to Montana State’s football team. “She likes the Bobcats, I like the Bobcats.”

They’ve been off and on for years and — while both have lost track of exactly how long it’s been — they think they’ve been steady for the past two. Now they’re learning how to be in what feels like a long-distance relationship with no end date, though they are just a few miles away.

“It’s hard sometimes,” Mubarak said. “I miss him.”

Mubarak and Domier are among the roughly 40 people who live in housing run by Reach Inc., a Bozeman nonprofit that serves adults with a range of developmental disabilities, including autism and chromosomal anomalies like Down syndrome. The nonprofit, staffed 24 hours a day, connects residents to jobs and friends in town to help them live as independently as possible. But those homes have largely been in lockdown since March.

No weekend trips to see parents or to hang out at the senior center. Visits are limited to a room divided by plexiglass or, for those willing, video chats. Long-held jobs in diners, hotels and shops have been replaced by contract work done at home, such as cleaning out test tubes. The only people allowed in the homes are staffers, and even they must keep their distance.

Many residents have settled into their new routines. But Dee Metrick, Reach’s executive director, said some don’t understand why their worlds have shrunk. A few still get frustrated when they can’t give high-fives to the aides who rotate through their homes. The isolation has intensified some residents’ long-existing anxiety. One Reach client who’s particularly scared of the virus gets mad every time someone passes by their home without a mask.

“Everything just came to a screeching halt,” Metrick said. “They have a lot more support than some people in the world right now, but our clients can feel a bit invisible and lost. Sometimes it’s harder for clients’ family members. There are parents who haven’t seen their kid since March who just want to hug them and know they’re OK.”

At least 300,000 people with intellectual or developmental disabilities live in group homes in the U.S., and are likely experiencing similar shifts. The facilities have good reason to be cautious. People with developmental disabilities are more likely to have medical conditions that make covid infections riskier. Early research has shown that people with intellectual and developmental disabilities are three times more likely to die if they contract the virus than those without such disabilities. Some can’t avoid coming into close contact with aides. And group housing can spawn fast-moving outbreaks.

“I hope we can beat the odds,” Metrick said. “We have one house that, if people in that house get sick, there’s a good chance most of them are going to end up in the hospital.”

As of Dec. 29, 160 of Montana’s at least 870 adults living in disability care settings had been diagnosed with covid-19 and five had died.

Domier gets why his world has changed. He follows Montana’s covid numbers by watching the news.

“Cases keep going up and down and up,” Domier said. “If people wear their mask, it would be OK.”

For Domier, the adjustment has been relatively easy. He likes routine and has created one that works for now.

Domier used to clean and organize shelves at Goodwill and worked a few days each week in the center where he met Mubarak. Now, he works at his kitchen counter, bagging screws and washers like those needed for self-assembled furniture. He and his roommates sometimes dump liquid out of test tubes, but he said that’s not his favorite task because the tubes stink. Even so, he likes being able to work from home, where it’s quiet and he gets to take turns picking radio stations.

“I’m busy all the time making money,” Domier said.

With extra time at home, Domier runs on a treadmill most days after work. He puts on his headphones and blasts Garth Brooks. He’s within pounds of hitting the 200-pound goal his doctor set for him.

Before the pandemic, his mom would typically visit once a month to go shopping and out for dinner. Now Domier calls her every Sunday evening to talk about the past week, a conversation that lasts hours.

Car rides are now his main freedom from home. Domier and his roommates have their driver circle Montana State University’s football stadium. It’s one of the first years in many he hasn’t been to a game. Fast-food drive-thrus are another favorite. When Domier gets his pick, they go to McDonald’s, where he orders a Dr Pepper and an apple pie.

“Sometimes we go to the airport and drive around,” Domier said. “Seeing airplanes coming in, land and take off.”

And, of course, on Sundays they drive past Mubarak’s place. When those visits don’t happen because of quarantines or bad weather, Domier doesn’t mind just having their video chat instead.

But they miss the days Domier would visit Mubarak and sit on her front porch to talk and their overlapping shifts in the work center. They miss cheering for each other when they competed in track and swimming in the Special Olympics. Mubarak’s favorite part of her days is still her work. Like Domier, she’s often sorting parts. She wants to get back to her job cleaning rooms in a downtown Bozeman hotel; it was a place to meet new people. She misses her friends.

This summer, she spent a lot of time drawing pictures of her friends in sidewalk chalk and caring for her patio flowers. Winter means finding other ways to relax. If it’s a hard day, she talks with Jenna Barlindhaug, an aide who works in her home.

“She teases me about my boyfriend every day,” Mubarak said, smiling, on a video call while Barlindhaug sat at a distance, both in masks.

Barlindhaug laughed and said they take turns teasing each other. “There are some tough days when people are in tears,” Barlindhaug said. “We really have to think of ways to cheer each other up.”

When the nonprofit’s annual December banquet moved online, Mubarak missed having Domier as her date. But she and her roommates still wore the dresses they had picked out months before, and Barlindhaug did everyone’s hair. They had burgers and cheesecake delivered and watched a photo slideshow of Reach residents’ lives over the past year.

Domier and Mubarak know they’ll likely get two shots in their arms to protect them from covid before life can return to something closer to normal — and they can attend the banquet together again.

Until then, there’s always Sunday.

States Move Ahead With Canada Drug Importation While Awaiting Signal From Biden

KFF Health News, January 29, 2021

The Pharmaceutical Research and Manufacturers of America, an industry trade group, filed suit in federal court in Washington, D.C., to stop the drug-purchasing initiatives in November.

This article was published on Friday, January 29, 2021 in Kaiser Health News.

By Phil Galewitz

Florida, Colorado and several New England states are moving ahead with efforts to import prescription drugs from Canada, a politically popular strategy greenlighted last year by President Donald Trump.

But it’s unclear whether the Biden administration will proceed with Trump’s plan for states and the federal government to help Americans obtain lower-priced medications from Canada.

During the presidential campaign, Joe Biden expressed support for the concept, strongly opposed by the American pharmaceutical industry. Drugmakers argue it would undercut efforts to keep their medicines safe.

The Pharmaceutical Research and Manufacturers of America, an industry trade group, filed suit in federal court in Washington, D.C., to stop the drug-purchasing initiatives in November. That followed the Trump administration’s final rule, issued in September, that cleared the way for states to seek federal approval for their importation programs.

Friday is the deadline for the government to respond to the suit, which could give the Biden administration a first opportunity to show where it stands on the issue. But the administration could also seek an extension from the court.

Meanwhile, Florida and Colorado are moving to outsource their drug importation plans to private companies.

Florida hired LifeScience Logistics, which stores prescription drugs in warehouses in Maryland, Texas and Indiana. The state is paying the Dallas company as much as $39 million over 2½ years, according to the contract. That does not include the price of the drugs Florida is buying.

LifeScience officials declined to comment.

Florida’s agreement with LifeScience came last fall, just weeks after the state received no bids on a $30 million contract for the job.

Florida’s importation plan calls initially for the purchase of drugs for state agencies, including the Medicaid program and the corrections and health departments. Officials say the plan could save the state in its first year between $80 million and $150 million. Florida’s Medicaid budget exceeds $28 billion, with the federal government picking up about 62% of the cost.

On Monday, the Colorado Department of Health Care Policy and Financing issued a request for companies to bid on its plan to import drugs from Canada. Unlike Florida’s plan, Colorado’s would help individuals buy the medicines at their local pharmacy. Colorado also would give health insurance plans the option to include imported drugs in their benefit designs.

Kim Bimestefer, executive director of Colorado’s Health Care Policy and Financing agency, said she is hopeful the Biden administration will allow importation plans to proceed. “We are optimistic,” she said.

Her agency’s analysis shows Colorado consumers can save an average of 61% off the price of many medications imported from Canada, she added.

Prices are cheaper north of the border because Canada limits how much drugmakers can charge for medicines. The United States lets the free market determine drug prices.

The Canadian government has said it would not allow the exportation of prescription drugs that would create or exacerbate a drug shortage. Bimestefer said that her agency has spoken to officials at the Canadian consulate in Denver and that officials there are mainly concerned about shortages of generic drugs rather than brand-name drugs, which is what her state is most interested in importing since they are among the most costly medicines in the U.S.

Colorado plans to choose a private company in Canada to export medications as well as a U.S. importer. It hopes to have a program in operation by mid-2022.

Other states working on importation are Vermont, New Hampshire and Maine.

But skeptics say getting the programs off the ground is a long shot. They note Congress in 2003 passed a law to allow certain drugs to be imported from Canada — but only if the secretary of the Department of Health and Human Services agreed it could be done safely. HHS secretaries under Presidents George W. Bush and Barack Obama refused to do that. But HHS Secretary Alex Azar gave the approval in September.

Biden’s HHS nominee, Xavier Becerra, voted for the 2003 Canadian drug importation law when he was a member of Congress.

HHS referred questions on the issue to the White House, which did not return calls for comment.

Trish Riley, executive director of the National Academy for State Health Policy, said states have worked hard to set up procedures to ensure drugs coming from Canada are as safe as those typically sold at local pharmacies. She noted that many drugs sold in the United States are already made overseas.

She said the Biden administration could choose not to defend the importation rule in the PhRMA court case or ask for an extension to reply to the lawsuit. “Right now, it’s murky,” she said of figuring out what the Biden team will do.

Ian Spatz, a senior adviser with consulting firm Manatt Health, questions how significant the savings could be under the plan, largely because of the hefty cost of setting up a program and running it over the objections of the pharmaceutical industry.

Another obstacle is that some of the highest-priced drugs, such as insulin and other injectables, are excluded from drug importation. Spatz also doubts whether ongoing safety issues can be resolved to satisfy the new administration.

“The Trump administration plan was merely to consider applications from states and that it was open for business,” he said. “Whether [HHS] will approve any applications in the current environment is highly uncertain.”

Kids Already Coping With Mental Disorders Spiral as Pandemic Topples Vital Support Systems

KFF Health News, January 29, 2021

Federal data shows a nationwide surge of kids in mental health crisis during the pandemic — a surge that's further taxing an already overstretched safety net.

This article was published on Friday, January 29, 2021 in Kaiser Health News.

By Christine Herman, Side Effects Public Media and Cory Turner, NPR and Rhitu Chatterjee, NPR

A bag of Doritos, that's all Princess wanted.

Her mom calls her Princess, but her real name is Lindsey. She's 17 and lives with her mom, Sandra, a nurse, outside Atlanta. On May 17, 2020, a Sunday, Lindsey decided she didn't want breakfast; she wanted Doritos. So she left home and walked to Family Dollar, taking her pants off on the way, while her mom followed on foot, talking to the police on her phone as they went.

Lindsey has autism. It can be hard for her to communicate and navigate social situations. She thrives on routine and gets special help at school. Or got help, before the coronavirus pandemic closed schools and forced tens of millions of children to stay home. Sandra said that's when their living hell started.

"It's like her brain was wired," she said. "She'd just put on her jacket, and she's out the door. And I'm chasing her."

On May 17, Sandra chased her all the way to Family Dollar. Hours later, Lindsey was in jail, charged with assaulting her mom. (KHN and NPR are not using the family's last name.)

Lindsey is one of almost 3 million children in the U.S. who have a serious emotional or behavioral health condition. When the pandemic forced schools and doctors' offices to close last spring, it also cut children off from the trained teachers and therapists who understand their needs.

As a result, many, like Lindsey, spiraled into emergency rooms and even police custody. Federal data shows a nationwide surge of kids in mental health crisis during the pandemic — a surge that's further taxing an already overstretched safety net.

'Take Her'

Even after schools closed, Lindsey continued to wake up early, get dressed and wait for the bus. When she realized it had stopped coming, Sandra said, her daughter just started walking out of the house, wandering, a few times a week.

In those situations, Sandra did what many families in crisis report they've had to do since the pandemic began: race through the short list of places she could call for help.

First, her state's mental health crisis hotline. But they often put Sandra on hold.

"This is ridiculous," she said of the wait. "It's supposed to be a crisis team. But I'm on hold for 40, 50 minutes. And by the time you get on the phone, [the crisis] is done!"

Then there's the local hospital's emergency room, but Sandra said she had taken Lindsey there for previous crises and been told there isn't much they can do.

That's why, on May 17, when Lindsey walked to Family Dollar in just a red T-shirt and underwear to get that bag of Doritos, Sandra called the last option on her list: the police.

Sandra arrived at the store before the police and paid for the chips. According to Sandra and police records, when an officer approached, Lindsey grew agitated and hit her mom on the back, hard.

Sandra said she explained to the officer: "'She's autistic. You know, I'm OK. I'm a nurse. I just need to take her home and give her her medication.'"

Lindsey takes a mood stabilizer, but because she left home before breakfast, she hadn't taken it that morning. The officer asked if Sandra wanted to take her to the nearest hospital.

The hospital wouldn't be able to help Lindsey, Sandra said. It hadn't before. "They already told me, 'Ma'am, there's nothing we can do.' They just check her labs, it's fine, and they ship her back home. There's nothing [the hospital] can do," she recalled telling the officer.

Sandra asked if the police could drive her daughter home so the teen could take her medication, but the officer said no, they couldn't. The only other thing they could do, the officer said, was take Lindsey to jail for hitting her mom.

"I've tried everything," Sandra said, exasperated. She paced the parking lot, feeling hopeless, sad and out of options. Finally, in tears, she told the officers, "Take her."

Lindsey does not like to be touched and fought back when authorities tried to handcuff her. Several officers wrestled her to the ground. At that point, Sandra protested and said an officer threatened to arrest her, too, if she didn't back away. Lindsey was taken to jail, where she spent much of the night until Sandra was able to post bail.

Clayton County Solicitor-General Charles Brooks denied that Sandra was threatened with arrest and said that while Lindsey's case is still pending, his office "is working to ensure that the resolution in this matter involves a plan for medication compliance and not punitive action."

Sandra isn't alone in her experience. Multiple families interviewed for this story reported similar experiences of calling in the police when a child was in crisis because caretakers didn't feel they had any other option.

'The Whole System Is Really Grinding to a Halt'

Roughly 6% of U.S. children ages 6 through 17 are living with serious emotional or behavioral difficulties, including children with autism, severe anxiety, depression and trauma-related mental health conditions.

Many of these children depend on schools for access to vital therapies. When schools and doctors' offices stopped providing in-person services last spring, kids were untethered from the people and supports they rely on.

"The lack of in-person services is really detrimental," said Dr. Susan Duffy, a pediatrician and professor of emergency medicine at Brown University.

Marjorie, a mother in Florida, said her 15-year-old son has suffered during these disruptions. He has attention deficit hyperactivity disorder and oppositional defiant disorder, a condition marked by frequent and persistent hostility. Little things — like being asked to do schoolwork — can send him into a rage, leading to holes punched in walls, broken doors and violent threats. (Marjorie asked that we not use the family's last name or her son's first name to protect her son's privacy and future prospects.)

The pandemic has shifted both school and her son's therapy sessions online. But Marjorie said virtual therapy isn't working because her son doesn't focus well during sessions and tries to watch TV instead. Lately, she has simply been canceling them.

"I was paying for appointments and there was no therapeutic value," Marjorie said.

The issues cut across socioeconomic lines — affecting families with private insurance, like Marjorie, as well as those who receive coverage through Medicaid, a federal-state program that provides health insurance to low-income people and those with disabilities.

In the first few months of the pandemic, between March and May, children on Medicaid received 44% fewer outpatient mental health services — including therapy and in-home support — compared to the same time period in 2019, according to the Centers for Medicare & Medicaid Services. That's even after accounting for increased telehealth appointments.

And while the nation's ERs have seen a decline in overall visits, there was a relative increase in mental health visits for kids in 2020 compared with 2019.

The Centers for Disease Control and Prevention found that, from April to October last year, hospitals across the U.S. saw a 24% increase in the proportion of mental health emergency visits for children ages 5 to 11, and a 31% increase for children ages 12 to 17.

"Proportionally, the number of mental health visits is far more significant than it has been in the past," said Duffy. "Not only are we seeing more children, more children are being admitted" to inpatient care.

That's because there are fewer outpatient services now available to children, she said, and because the conditions of the children showing up at ERs "are more serious."

This crisis is not only making life harder for these kids and their families, but it's also stressing the entire healthcare system.

Child and adolescent psychiatrists working in hospitals around the country said children are increasingly "boarding" in emergency departments for days, waiting for inpatient admission to a regular hospital or psychiatric hospital.

Before the pandemic, there was already a shortage of inpatient psychiatric beds for children, said Dr. Christopher Bellonci, a child psychiatrist at Judge Baker Children's Center in Boston. That shortage has only gotten worse as hospitals cut capacity to allow for more physical distancing within psychiatric units.

"The whole system is really grinding to a halt at a time when we have unprecedented need," Bellonci said.

'A Signal That the Rest of Your System Doesn't Work'

Psychiatrists on the front lines share the frustrations of parents struggling to find help for their children.

Part of the problem is there have never been enough psychiatrists and therapists trained to work with children, intervening in the early stages of their illness, said Dr. Jennifer Havens, a child psychiatrist at New York University.

"Tons of people showing up in emergency rooms in bad shape is a signal that the rest of your system doesn't work," she said.

Too often, Havens said, services aren't available until children are older — and in crisis. "Often for people who don't have access to services, we wait until they're too big to be managed."

While the pandemic has made life harder for Marjorie and her son in Florida, she said it has always been difficult to find the support and care he needs. Last fall, he needed a psychiatric evaluation, but the nearest specialist who would accept her commercial insurance was 100 miles away, in Alabama.

"Even when you have the money or you have the insurance, it is still a travesty," Marjorie said. "You cannot get help for these kids."

Parents are frustrated, and so are psychiatrists on the front lines. Dr. C.J. Glawe, who leads the psychiatric crisis department at Nationwide Children's Hospital in Columbus, Ohio, said that once a child is stabilized after a crisis it can be hard to explain to parents that they may not be able to find follow-up care anywhere near their home.

"Especially when I can clearly tell you I know exactly what you need, I just can't give it to you," Glawe said. "It's demoralizing."

When states and communities fail to provide children the services they need to live at home, kids can deteriorate and even wind up in jail, like Lindsey. At that point, Glawe said, the cost and level of care required will be even higher, whether that's hospitalization or long stays in residential treatment facilities.

That's exactly the scenario Sandra, Lindsey's mom, is hoping to avoid for her Princess.

"For me, as a nurse and as a provider, that will be the last thing for my daughter," she said. "It's like [state and local leaders] leave it to the school and the parent to deal with, and they don't care. And that's the problem. It's sad because, if I'm not here …"

Her voice trailed off as tears welled.

"She didn't ask to have autism."

To help families like Sandra's and Marjorie's, advocates said, all levels of government need to invest in creating a mental health system that's accessible to anyone who needs it.

But given that many states have seen their revenues drop due to the pandemic, there's a concern services will instead be cut — at a time when the need has never been greater.

This story is part of a reporting partnership that includes NPR, Illinois Public Media and Kaiser Health News.

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