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.
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."
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.
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.
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.
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.
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.
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.”
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.
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.
Black Americans are still receiving covid vaccinations at dramatically lower rates than white Americans even as the chaotic rollout reaches more people, according to a new KHN analysis.
Almost seven weeks into the vaccine rollout, states have expanded eligibility beyond front-line healthcare workers to more of the public — in some states to more older adults, in others to essential workers such as teachers. But new data shows that vaccination rates for Black Americans have not caught up to those of white Americans.
Seven more states published the demographics of residents who have been vaccinated after KHN released an analysis of 16 states two weeks ago, bringing the total to 23 states with available data.
In all 23 states, data shows, white residents are being vaccinated at higher rates than Black residents, often at double the rate — or even higher. The disparities haven't significantly changed with an additional two weeks of vaccinations.
In Florida, for example, 5.5% of white residents had received at least one vaccine dose by Jan. 26, compared with 2% of Black residents. That's about the same ratio as two weeks ago, when the rates were 3.1% and 1.1%, respectively.
African Americans are being left behind because of barriers stemming from structural racism, as well as a failure to address nuanced hesitancy and mistrust about the vaccines and the medical system overall. The ongoing vaccination gap has prompted officials from around the nation to call for action.
"With covid-19 continuing to take a disproportionate and deadly toll on communities of color, we need urgent solutions to address health inequities and crush this virus," said Rep. Steven Horsford (D-Nev.), first vice chair of the Congressional Black Caucus. He said he is working to pass legislation to address inequity.
Across the U.S., non-Hispanic Black Americans are 1.4 times more likely to contract covid, and 2.8 times more likely to die of it, than white Americans, according to a Centers for Disease Control and Prevention analysis.
The ongoing disparity in vaccinations may be a self-fulfilling prophecy: A new KFF poll shows a correlation between people who know someone who has gotten the vaccine and their willingness to get it. (KHN is an editorially independent program of KFF.) Thus, it is harder to gain ground in communities that don't have many people getting vaccinated.
One of President Joe Biden's first executive orders prioritized covid data collection. He also established the COVID-19 Health Equity Task Force, led by Dr. Marcella Nunez-Smith, who cited KHN's analysis in a CNN town hall Wednesday when describing the country's vaccine inequity. She stressed the task force's need to build confidence in the vaccine and fix access issues.
But Dr. Céline Gounder, a former covid adviser for Biden, cautioned there is no quick fix to the structural inequities reflected in the numbers — and Congress still needs to decide on Biden's $1.9 trillion covid relief plan.
"If they fund it in full, you'll have the money to do some of these things," Gounder said. "What you really need to do is change the system so it doesn't happen in the first place."
Earlier this month, the CDC told KHN it planned to add race and ethnicity data to its dashboard, but could not say when.
Citing KHN's initial analysis, Sen. Elizabeth Warren (D-Mass.) tweeted on Jan. 19 that the CDC "needs to add race and ethnicity data to its public dashboard immediately — we can't address what we can't see."
On Wednesday, CDC spokesperson Kristen Nordlund said officials plan to release the data publicly early next week.
Vaccine providers have already been required by the CDC to collect race and Hispanic ethnicity information for each person they vaccinate. In states that refused KHN requests for the data, localreportssuggest disparities can be stark.
Many of the states that have shared data by race put it on dashboards that are difficult to understand. Some report data by dose, meaning that people who have received both doses are represented twice.
All 23 states that are reporting data by race break out numbers for Black and white residents. But beyond that, data is often limited. Eight of them do not report specific numbers for Native Americans and Alaska Natives, who are dying from covid at 2.6 times the rate of white Americans, according to the CDC study.
Massachusetts, for example, combines all data for people whose race is unknown with Native Americans, Alaska Natives, Native Hawaiians, Pacific Islanders and others.
Race and ethnicity information in healthcare data is often incomplete, and covid data is no exception. Although most states that provide the data have relatively low rates of missing information, in a few states race or ethnicity demographics are missing for half the people who have been vaccinated.
The data on Hispanic ethnicity is particularly fraught. Those who give vaccines are supposed to ask patients about both race and Hispanic ethnicity in separate questions, because Hispanics can be of any race or combination of races. In nearly all states that break out such numbers separately, the percentage missing Hispanic ethnicity information is far higher than those missing race information. Hispanic Americans have died at far higher rates than non-Hispanic white Americans.
The CDC data release should help standardize what data is available — in addition to possibly providing clarity on the dynamics in the 27 remaining states — but it is not yet clear how the CDC will address the gaps in data collection.
Joyce Hanson was thrilled when she heard Gov. Gavin Newsom announce Jan. 13 that Californians age 65 and older would be eligible to get vaccinated against covid-19.
Infections and hospitalizations had been surging in California, and Hanson knew a simple trip to the grocery store put her at greater risk of getting sick and dying. Plus, she hadn't seen her daughter in more than a year, so she immediately began making plans to visit her in the San Francisco Bay Area.
"I felt this huge weight lifted off my heart when the governor said me and my husband could get vaccinated," said Hanson, 69, a San Bernardino resident and registered Democrat who voted for Newsom in 2018.
She jumped online to book an appointment, frantically searching San Bernardino city and county websites for openings. Next she called pharmacies all over Southern California, then hospitals and her local health department. No luck.
"It's very frustrating," said Hanson, who is among a growing number of Californians becoming disillusioned with Newsom — including some of his fellow Democrats — over California's erratic vaccination rollout, which has been riddled with mixed messages, shifting priorities and poor communication.
"The messaging hasn't been very clear," she said. "If we're not going to actually be able to get the vaccine until March or April, I can deal with that, but just be honest and tell us that it's not realistic yet."
Since October, Newsom has touted his administration's readiness to vaccinate the state's 40 million residents, while repeatedly assuring them that "hope is on the horizon." He has vowed that California would lead the nation with a fair and efficient system of delivering vaccines.
Instead, the situation has devolved into chaos and confusion, as vulnerable older people, teachers and others in essential industries scramble to find a vaccine appointment — often without help or direction from state or local officials.
Newsom, who emerged as an early leader in the pandemic when he issued the nation's first statewide stay-at-home order, is desperately trying to turn the situation around — and political strategists say he must do so quickly because his political future depends on it. He is facing a Republican-driven effort to recall him from office, with supporters gaining momentum from the vaccine problems. Even some in his Democratic base are beginning to question his leadership.
"This is not going well. You just cannot have these kinds of disparities we're seeing all over California. The governor has got to get control of this vaccination effort," said Los Angeles-based Democratic strategist Garry South, who ran the gubernatorial campaigns of former Democratic Gov. Gray Davis, recalled by voters in 2003 and replaced by Republican Gov. Arnold Schwarzenegger.
"If the vaccination process is not carried out smoothly and efficiently, a lot of voters will blame him, regardless of whether it's actually his fault or not," South said. "People did not blame Gray Davis for starting the electricity crisis, but they did blame him for failing to solve the problem."
Recall organizers have until March 17 to gather the roughly 1.5 million valid signatures needed to put the question before voters. As of Jan. 6, the California secretary of state's office had received nearly 724,000 signatures.
"We're in a mad dash to get enough," said Orrin Heatlie, a retired Yolo County Sheriff's Department sergeant, who is leading the recall campaign. "The dark path to getting vaccinated is not why we started this, but the governor's mishandling of it is causing real harm and has only furthered our momentum."
Newsom campaign spokesperson Dan Newman dismissed the recall effort as "expected background noise" and argued that Newsom is focused on ending the pandemic. "His obsessive and relentless focus is on vaccinations, and economic relief and recovery."
Newsom has enjoyed relatively high ratings, with 58% of Californians approving of his job performance, according to the latest job approval poll by the Public Policy Institute of California. That poll was conducted in October, before any covid vaccines had been cleared for use.
While the governor cannot control the supply of vaccine flowing to California — a major limiting factor in the state's ability to distribute doses — he is leading the statewide vaccination strategy that was submitted to the Centers for Disease Control and Prevention in October.
"We have long been in the vaccination business," Newsom boasted in a news conference on Oct. 19, saying California's experience with mass vaccination campaigns has prepared it to undertake one now, complete with public service announcements, cutting-edge technology and state support for local efforts. "Just consider — 19 million annual flu shots typically distributed here in the state of California."
Newsom's vaccine strategy mirrors his approach to the pandemic so far: It hands primary responsibility for administering the vaccine to the state's 58 counties, which have different plans for who gets the shot first, how they will be notified when it's their turn and where they will be vaccinated.
Chronically underfunded county health departments — which are drowning under other pandemic-related duties, such as covid testing, contact tracing and enforcing local restrictions on businesses — have struggled to keep up with the additional responsibilities. In many cases, they have failed to communicate effectively with the public or provide vaccines quickly and efficiently.
Dr. Phuong Luu, the health officer for Yuba and Sutter counties in rural Northern California, said overworked public health workers are spending an immense amount of time fielding phone calls from people demanding shots. "It's an extreme amount of pressure," she said. "People are angry and they're calling saying, 'No, the governor said that I'm eligible. Why aren't you accommodating me?'"
In the Bay Area's suburban Contra Costa County, health officer Dr. Chris Farnitano said the county cannot accommodate everyone 65 and older. It is focusing on people 75 and up, and supplies are dwindling so quickly that officials can't promise a timely second dose.
California is consistently at the bottom nationally in percentage of shots administered, with about half of doses used as of Thursday, compared with 81.6% in West Virginia and 80.8% in North Dakota, according to an analysis of state and federal vaccine data. Texas, the state closest to California in population, has administered 60% of its shots.
Overall, 5.8% of Californians have received their first dose, compared with 6.8% of people nationally.
"States that rely heavily on counties have faced bigger challenges," said Larry Levitt, executive vice president for health policy at KFF. "The more layers that this implementation has to pass through, the more challenging it seems to get." (KHN, which produces California Healthline, is an editorially independent program of KFF.)
A bipartisan group of 47 state legislators sent Newsom a letter this month blasting the vaccination chaos. "We are all aware of the limited number of vaccines that have been made available to the states, but we believe that we need to plan for a more effective and efficient rollout," they wrote.
Newsom has acknowledged that he must remedy the situation, pledging on Jan. 6 to administer 1 million additional vaccines in 10 days. He fell short on that promise but characterized the effort as a success, with 900,000 additional vaccinations administered by Jan. 15. This week, he released a plan to speed and centralize the vaccination distribution process by mid-February, and he unveiled a website called My Turn, which eventually will inform Californians when they are eligible and allow them to make appointments.
Widespread frustration is not unique to California. Nearly 60% of adults 65 and older in the U.S. say they don't know when or where they will get vaccinated, and nearly three-quarters of Americans say they're either frustrated with the status of vaccinations or flat-out angry, according to a new KFF poll.
But in California, that anger presents political difficulty for Newsom.
"He's got more crises on his plate than any previous governor," former governor Davis told California Healthline. "At the moment, people in California are upset, so accelerating the administration of those vaccines should be the first, and most important, thing that every public elected official does every day."
Newsom may appear safe from a Republican-led effort in a state that votes overwhelmingly Democratic, but unlike aspects of the pandemic that have disproportionately hurt small-business owners or Black and Latino communities, the vaccination issue touches nearly all Californians.
"Newsom's handling of the crisis may not be what qualifies it for the ballot," said Dan Schnur, who teaches political communication at the University of Southern California and the University of California-Berkeley. "But if the recall does qualify, how the vaccination process was handled is going to be the primary basis on which voters make their decision on whether to keep him in office or not."
Some voters say Newsom's vaccination rollout shows it's time for new political blood.
"You hear him on the news saying we're doing better and we see light at the end of the tunnel, but this isn't going well," said Scott Hunyadi, 31, of San Dimas, who voted for Newsom in 2018. "I'd never vote for a Republican, but given the opportunity, I'd certainly vote to recall Newsom and install a better Democratic candidate if one was on the ballot."
Hanson, who still hasn't found an appointment, places most of the blame on former President Donald Trump. But she said Newsom has acted as a "cheerleader" for his administration rather than being honest about his missteps.
"I know he's trying, but honestly, at this point, I'm so soured," she said. "There's no guarantee that anyone could do a better job, but I'd certainly look at a Democratic challenger if there was one."
In America's healthcare system, dominated by hospital chain leviathans, New Hanover Regional Medical Center in Wilmington, North Carolina, is an anomaly. It is a publicly owned hospital that boasts good care at lower prices than most and still flourishes financially.
Nonetheless, New Hanover County is selling the hospital to one of the state's biggest healthcare systems. The sale has stoked concerns locally that the change in ownership will raise fees, which would not only leave patients with bigger bills but also eventually filter down into higher health insurance premiums for Wilmington workers.
Hospital consolidation has been a consistent trend unabated by recessions, bountiful times or even a pandemic. The New Hanover sale, which requires only the approval of the state attorney general for completion, prompts the question: If Wilmington's self-sufficient medical center cannot stand alone, can any public hospital avoid being subsumed into the large systems that economists say are helping propel the cost of American healthcare ever upward?
"We project the prices will go up, they'll probably lay off employees after a couple of years, and the hospital will decline in terms of its quality," said Dale Smith, a retired Wilmington businessman who opposed the sale. Applying his professional experience buying chemical companies to the hospital industry, Smith said: "A very large percentage of mergers and acquisitions, like 90%, never succeed in fulfilling their initial goals."
The public hospital — those owned by counties, cities or other local government entities — is an increasingly endangered species, numbering 965 out of 5,198, according to the American Hospital Association. While the total number of hospitals in the nation dropped by 4% between 2008 and 2018, the number of state or local hospitals decreased by 14%.
Many have been absorbed by large systems. Over the previous 14 years, the percentage of markets where one healthcare system treats more than half the cases grew from 47% to 57%. In 2017, nine out of 10 hospital markets met the federal definition for being highly concentrated.
While the industry says larger systems allow hospitals to run more efficiently, numerous studies have found that charges to insurers and patients are higher from hospitals with more market power. One study calculated the premium to be 7% to 9%; another study found 12%.
"There is a growing consensus that hospital mergers do lead to higher prices," said Christopher Whaley, a policy researcher at the Rand Corp., a research organization.
Novant and backers of the sale disagree that prices will increase more than they would have otherwise. "We looked into the future and we felt we needed more resources," said Spence Broadhurst, who was the co-chair of the committee the county created to evaluate the medical center's future. "We were pretty convinced that the risk of doing nothing was significant."
While the coronavirus inflicted serious financial damage on many hospitals by forcing them to postpone elective surgeries and improve infection control, the outbreak has not stymied mergers and acquisitions. In the third quarter of 2020, Kaufman Hall, a Chicago firm that advises companies on such deals, identified four substantial healthcare transactions, tying the highest number the firm has seen in a single quarter.
"In 2021 and beyond, even more activity in M&A is expected," said Anu Singh, a managing director at Kaufman Hall.
Both the Mission and New Hanover sales provoked substantial community blowback. New Hanover opened its doors in 1967, in the midst of the civil rights movement, as Wilmington's first integrated hospital. It grew to become the nation's third-largest county-owned hospital, serving seven counties in southeastern North Carolina.
But unlike many public hospitals, the medical center makes money: $110 million in the fiscal year ending in September 2019, which translated to an enviable 10% surplus. It is the largest county-owned system that does not require taxpayer subsidies.
Despite its market leverage as the only general hospital in Wilmington, New Hanover charged private insurers less than did the 24 other North Carolina hospitals for which Whaley and his Rand colleagues could assess inpatient and outpatient prices from 2016 through 2018. New Hanover's prices were 13% lower than UNC Health's, 15% lower than Novant Health's and 32% lower than Atrium Health's, according to the Rand data.
New Hanover has also demonstrated its ability to provide care to Medicare beneficiaries thriftily without sacrificing quality: In the first six months of 2019, its accountable care organization, or ACO, earned a $3 million bonus from Medicare for saving more money than the government expected, according to federal data. Novant's ACO did not reduce costs enough to earn a bonus.
"This is not your typical county hospital. This is a fairly high-functioning hospital with high-quality care and reasonable prices," said Barak Richman, a professor of business administration at Duke Law School.
But leaders in New Hanover County and the medical center announced in 2019 they were exploring either selling the hospital or joining a larger healthcare system. They said they feared the hospital needed more capital and help to keep up with the surging population growth in the region and medical advances, including costly technologies.
The county's request for proposals drew many suitors, including Novant and Atrium, which had been battling for dominance throughout North Carolina's regional healthcare markets. Novant's winning bid, which the county accepted last October, will pay the county $1.5 billion. The county will use most of the money to fund a new nonprofit endowment to bolster community health but will keep $350 million. Novant pledged to invest an additional $3.1 billion to build and upgrade medical facilities and equipment in the region, and it said it would create a branch of the University of North Carolina School of Medicine at New Hanover.
"We knew we wanted more," said John Gizdic, president and CEO of New Hanover. "We wanted to do more; we wanted to be more."
Along with the hospital, the sale includes other medical facilities the county owns under the medical center's umbrella: smaller hospitals for children, rehabilitation and mental health on the medical center's campus; a nearby orthopedic hospital, a physicians' group and outpatient centers; and its contract to manage Pender Memorial Hospital, owned by an adjacent county.
Carl Armato, Novant's president and chief executive, noted in an interview that Novant already owns the nearby Brunswick Medical Center, which refers some patients to New Hanover and, he said, provides affordable healthcare. "The two organizations have a unique cultural alignment," he said.
Even some opponents of the deal acknowledged that New Hanover was not guaranteed to remain financially strong. "Owning and running a hospital has got some serious wind in its face," said Bertram Williams III, an investment adviser whose father was a surgeon who helped found New Hanover. "There's a lot of things coming down the pike making it more and more complicated to manage a hospital and keep it above water."
Williams said he expected Novant would need to recoup the money it is spending on the deal. "That money's got to be repaid," he said. "It's going to come from local payers. We know it's going to be higher costs, there's no question about that. Might there be higher costs anyway? Probably."
The sale of the medical center removes the direct leverage local consumers had in influencing the hospitals' prices. Novant agreed to create a local hospital board, with a majority of members living in the service areas, but the board's role will not extend to setting prices.
"Novant Health, what they're proposing to do sounds just too good to be true," said Howard Loving, a retired naval officer who questioned the sale. "To my mind, the first thing that's going to unravel is there's two years with the doctors who are there now, [and then] Novant will have the ability to decide who gets to stay and who gets to go."
State Treasurer Dale Folwell said he expects that, as part of Novant, New Hanover will press for higher rates from the healthcare fund that covers state employees and teachers, which Folwell's office oversees. "I'm their largest customer," he said. "I know we should expect quality to go down, access to go down, prices to go up. And when that happens, public service workers get hit the worst."
Novant disputed that its takeover would lead to higher costs. "Novant Health has a track record of lowering the cost of care to patients compared to other healthcare systems in North Carolina," the organization said in a statement. Novant also noted that more low-income people will qualify for free or lower-cost care under Novant's charity care rules than under New Hanover's.
Unpersuaded, opponents of the sale said the county did not take a serious enough look at finding other ways to raise capital without losing control of the hospital.
"They said the future is scary and unknown," Smith, the retired businessman, said. "The counterargument is, Why don't we wait and see what the future holds?"
"Once this is done," he added, "you can never go back."
While the vaccine rollout has hit snags across the U.S., including in many large urban areas, some rural counties have gotten creative about getting the doses out quickly to long-term care facilities.
Bingo is back in the dining room. In-person visits have returned, too, though with masks and plexiglass. The Haven Assisted Living Facility’s residents are even planning a field trip for a private movie screening once they’ve all gotten their second round of covid-19 vaccines.
Such changes are small but meaningful to residents in the Hayden, Colorado, long-term care home, and they’re due mostly to the arrival of the vaccine.
While the vaccine rollout has hit snags across the U.S., including in many large urban areas, some rural counties — with their smaller populations and well-connected communities — have gotten creative about getting the doses out quickly to long-term care facilities. They are circumventing bogged-down Walgreens and CVS, the pharmacy chains contracted for the campaign, and instead are inoculating their older residents with the counties’ shares of doses.
It’s clear why the counties are trying their own path. Federal data provided by the state of Colorado shows that, as of Jan. 21, dozens of long-term care facilities in Colorado were enrolled to receive vaccines from Walgreens or CVS but still did not have any vaccination dates scheduled. Among assisted living facilities in particular, rural locations tended to have later start dates than non-rural ones. By mid-January, over 90 facilities had opted out of the program that has been beset by cumbersome paperwork and corporate policies.
When Roberta Smith, who directs the Routt County Public Health Department, learned in December that The Haven and another facility in the county hadn’t gotten any dates from Walgreens for their shots, she diverted about 100 doses from the county’s allotment. The vaccines would likely have gone to health care workers, she said, but she couldn’t let the most vulnerable in the county wait.
Fourteen of the 19 people who died of covid in the county, after all, had been residents of those two long-term care facilities.
The county received a shipment of Moderna vaccines the following week to continue with its health care workers, Smith said.
The health department ensured that all able and willing residents of the county’s two long-term care facilities received their first doses before 2021 began. Smith suspects such reprioritization and fast deployment — despite the department’s reliance on spreadsheets and sticky notes to schedule visits — is easier in small communities.
“There is a sense of community in our smaller, rural counties that we’re all kind of looking out for each other. And when you tell someone, ‘Hey, we need to vaccinate these folks first,’ they’re quick to say, ‘Oh, yeah,’” Smith said.
Hayden, a town of about 2,000 in northwestern Colorado, is the kind of place where, within hours of Haven staffers posting online that they were looking for a grill, workers from the hardware store delivered one at no charge. It’s the kind of town where locals have come throughout the pandemic to serenade Haven residents with guitar, flute and violin performances outside the windows. When the virus hit The Haven, eventually killing two of its 15 residents, locals paraded past the facility in their cars, taped with balloons and signs that said “We love you” and “Get well soon.”
After all the heartache, isolation and waiting, newly vaccinated resident Rosa Lawton, 70, is ready to bust out of The Haven. She said she expected to get her second vaccine dose Jan. 28.
“I hope to be able to go shopping at Walmart and City Market and go to the bank, the library, the senior center. … I won’t stop,” she said, laughing. “Right now, we’re restricted to the building.”
Even after getting everyone vaccinated, though, assisted living locations won’t be able to fling open the doors quite yet. State and federal officials need to give the OK, said Doug Farmer, president and CEO of the Colorado Health Care Association, which represents long-term care facilities in the state. Still, the combination of vaccines, repeated negative covid tests and a lower level of virus spread in the community is allowing some facilities the peace of mind to crack the doors open just a bit in the meantime.
Until recently, Lawton and others at The Haven were playing bingo perched in their doorways, with a staff member moving down the hallway calling out numbers. Lawton said she could see about four others from her door, but not her friends Sally, Ruth or Louise. Now, they’re back in the dining room, with one person to a table and playing with sanitized chips.
“We can see each other and we’re closer together and we can hear the caller better,” said Lawton. “It’s just more of a group experience.”
Residents can now gather in the common areas, wearing masks, to play the piano and do target practice with foam dart guns. And the excursion to a movie theater next month will be the first field trip in nearly a year. (Lawton is rooting for watching “The Sound of Music.”)
“It just feels overall lighter,” said Adrienne Idsal, director of The Haven, hours before receiving her second vaccine dose.
Fraser Engerman, a spokesperson with Walgreens, confirmed that some counties moved ahead with vaccinations before the company received its allocation, and said the company is on track to complete vaccinations at all Colorado long-term care facilities that they were responsible for by the end of January. Monica Prinzing, a CVS Health spokesperson, said that her company has completed first doses for all 119 skilled-nursing facilities in Colorado and more than half the assisted living sites it partnered with, adding that their team is working closely with facilities to “remain on track to meet our program commitments.”
Along the state’s eastern edge, where Colorado meets Kansas, a pair of counties is already done vaccinating long-term care residents, according to Meagan Hillman, the public health director for Prowers and Kiowa counties.
In December, Hillman and her colleagues started to wonder just how Walgreens was going to get the shots to their four local long-term care facilities.
“Out here, I’m two-plus hours from the closest Walgreens, and I don’t even know where a CVS is,” she said. “It’s such a huge operation and we just were worried, you know. Oftentimes the little guy gets left out or left for last.”
Hillman said she and her colleagues managed to secure Pfizer vaccines from a local hospital.
“We have been so beat down in public health that I actually went and did the vaccination clinic,” said Hillman, who is also a physician assistant. “We just needed that — a good, heart-swelling thing to do.”
She said it indeed helped boost her spirits to give the shots herself. “Finally, I feel like the light at the end of the tunnel is not a train,” she said.
In the nine months leading up to her due date, Kayla Kjelshus and her husband, Mikkel, meticulously planned for their daughter’s arrival.
Their long to-do list included mapping out their family’s health insurance plan and registering for baby gear and supplies. They even nailed down child care ahead of her birth.
“We put a deposit down to hold a spot at a local day care following our first ultrasound,” said Kayla Kjelshus, of Olathe, Kansas.
The first-time parents felt ready for their daughter’s debut on Feb. 15, 2019. But one of the happiest days of their lives turned out to be one of the scariest. Their daughter, Charlie, had a complication during delivery that caused her oxygen levels to drop and put her at risk for brain damage.
“We had a waiting room filled with family and friends,” Mikkel recalled. “To come out and say things aren’t well … it was really hard.”
Charlie was transferred from St. Luke’s Community Hospital to HCA Overland Park Regional Medical Center, where she received treatment in the neonatal intensive care unit, known as the NICU, for the next seven days.
Doctors sent Charlie home with a positive prognosis. The couple had decided that Kayla, a nurse practitioner, would carry Charlie on her insurance plan through Blue Cross and Blue Shield of Kansas City. Her plan offered better rates than Mikkel’s, and his plan was based in another state and carried a higher deductible. So when the hospital asked for insurance information, Kayla provided her policy number; Mikkel did not.
They expected things to work out fine between the insurance company and the hospitals.
Then the bills came.
The Patient: Charlie Kjelshus, an infant covered by her mother’s plan through Blue Cross and Blue Shield of Kansas City and, eventually, her father’s plan, CommunityCare of Oklahoma
Medical Service:Whole body cooling and other treatment in the NICU to prevent brain injury that may result from oxygen deprivation during birth
Service Provider: HCA Overland Park Regional Medical Center in Overland Park, Kansas
Total Bill: Multiple charges totaling $270,951, according to Mikkel Kjelshus, including a charge of $207,455 for the NICU stay
What Gives: Kayla Kjelshus filed a claim with Blue KC, and the insurer started paying for baby Charlie’s care. But then it canceled payments to the HCA Overland Park hospital, St. Luke’s Community Hospital and Charlie’s neurologist, pediatrician and other physicians.
“We thought, ‘This is crazy,’” Mikkel said. “‘We have insurance.’”
What was going on?
The Kjelshus family had slammed into something well known among insurance experts but little understood by the general public. “Coordination of benefits” and “the birthday rule” are the jargon terms for the red tape that snared them.
When a child is born into a family in which both parents have insurance through their jobs, the parents are supposed to “coordinate benefits” — meaning they must tell both insurers that their child is eligible for coverage under two plans. The parents might be forgiven for thinking they have some say in how their child will be insured. In most cases, they don’t.
Instead, a child with double health insurance eligibility must take as primary coverage the plan of the parent whose birthday comes first in the calendar year; the other parent’s insurance is considered secondary. This model regulation was set by the National Association of Insurance Commissioners and adopted by most states, including Kansas, said Lee Modesitt, director of government affairs with the Kansas Insurance Department.
For Charlie Kjelshus, the birthday rule meant her dad’s plan — with a $12,000 deductible, a high coinsurance obligation and a network focused in a different state — was primary. Her mom’s more generous plan was secondary.
Mom Kayla said Blue KC dispatched an investigator to discover that dad Mikkel had insurance through his job. The family had not been trying to hide Mikkel’s coverage; they merely weren’t aware of the birthday rule and that they may be subject to state laws that ensure babies are covered for the first 31 days of life.
“If these are the rules of engagement, you need to tell people upfront that these are the rules,” said Dr. Linda Burke, an OB-GYN and author of “The Smart Mother’s Guide to a Better Pregnancy.” “It’s a communication problem.”
After Blue KC informed Mikkel that his insurance had to serve as primary coverage, CommunityCare of Oklahoma did pay Charlie’s bills from the hospitals and other providers. It paid HCA Overland Park $16,605 on the $207,455 NICU charge. The insurer said its negotiated rate on the bill was $35,721. With Mikkel’s deductible and coinsurance, that left the family on the hook for more than $19,116, it seemed.
“When an insurance company finds out that a baby is in the NICU, then it’s a red flag,” Burke said. “They are going to look for ways to cut their losses.”
Resolution: The couple turned to the Kansas Department of Insurance to file a complaint about the bill, but the department declined to help because Kayla’s policy is self-funded by her employer, which means the company is subject to federal rather than state regulations.
After close to a year and a half of going back and forth with their insurance companies and the hospitals, Blue KC paid $19,116 of the Kjelshuses’ bill as a secondary insurer and said the Kjelshuses should not be responsible for a remaining balance of $7,504.51 from HCA Overland Park. But the family kept getting bills.
And, beginning in summer 2020, collections calls from the hospital rolled in daily, leaving the couple frustrated and confused.
Eventually, after a human resources officer at Kayla’s job stepped in to help, they received a statement with a zero balance. Their own calls to HCA Overland Park hospital billing department didn’t get them anywhere.
“We always got a different answer,” Kayla said. “It was so frustrating.”
A spokesperson for the hospital apologized for the deluge of calls from collections.
“We made an administrative error and an automated billing call system for payment occurred, causing the family undue frustration during an already stressful time, and we apologize,” the hospital wrote in a statement. “Once the issue was identified and resolved, the insurance companies processed the claim and we informed the family that there is a zero balance on the account. Again, we are sorry for the stress and inconvenience, and wish them well.”
In a statement, Blue KC acknowledged that coordination of benefits can be confusing for members, and that the company follows rules of state and federal regulators, modeled on standards set by the NAIC. It said the Kjelshuses’ future claims would continue to be paid and that a “dedicated service consultant” would continue to work with Kayla Kjelshus.
In the end, the insurers and hospitals settled Charlie’s bill as they were supposed to: The primary insurer paid first, and the secondary paid what had not been covered by the first. But it took more than a year of phone calls, appeals and complaints before the Kjelshus family had the matter settled. Charlie turns 2 next month.
The Takeaway: In theory, “the birthday rule” would be a fair, if random, way to figure out which insurance should be primary and which secondary for families with insurance from two employers. The presumption is that the premiums, deductibles and networks are roughly similar in both parents’ insurance plans — but that’s simply not the case for many families.
The Kjelshuses found out the hard way they didn’t have a choice about which parents’ insurance was primary. They might have avoided their quagmire if Mikkel had dropped his own coverage and gotten onto Kayla’s plan before Charlie was born.
It’s not clear whose responsibility it is to help families navigate these rules before a baby is born. It’s even more complicated for parents who are divorced or never married. Insurance companies don’t always offer the critical information families need about the coordination of benefits.
“Expecting parents should try to get in touch with their health plan before the baby is born to find out about the coverage rules,” said Karen Pollitz, a senior fellow at KFF, the Kaiser Family Foundation. (KHN is an editorially independent program of KFF.)
“Also figure out if they want to switch the entire family onto one plan once the baby is born.”
It’s also a good idea to speak to human resources representatives at both parents’ jobs. The birth of a baby is considered “a qualifying event” for insurance coverage in all group health plans, so families can make decisions about changing coverage at that time. Otherwise, families might have to wait for open enrollment to make coverage changes.
“It is ridiculous to me my wife and I faced so many issues since both parents have health insurance,” Mikkel Kjelshus wrote. His daughter, Charlie, now is covered only by his wife’s plan.