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.
As they rush to vaccinate millions of Americans, health officials are struggling to collect critically important information — such as race, ethnicity and occupation — of every person they jab.
The data being collected is so scattered that there's little insight into which healthcare workers, or first responders, have been among the people getting the initial vaccines, as intended — or how many doses instead have gone to people who should be much further down the list.
The gaps — which experts say reflect decades of underfunding of public health programs — could mean that well-connected people and health personnel who have no contact with patients are getting vaccines before front-line workers, who are at much higher risk for illness. Federal and state officials prioritized health workers plus residents and staffs of nursing homes for the first wave of shots.
Although officials leading President Joe Biden's covid response have pledged to tackle racial inequities as they seek to control the pandemic, lapses in reporting race or ethnicity could hinder efforts to identify and track whether minorities hit especially hard by the pandemic are getting shots at a high-enough rate to achieve hoped-for levels of herd immunity. So far, limited data in multiple states shows Black residents are getting vaccinated at lower rates than whites.
"Every state knows where they've sent vaccine, and every provider has to report inventory. But as far as who is being vaccinated, that one is a little more tricky," said Claire Hannan, executive director of the Association of Immunization Managers.
Data that eventually makes its way to the Centers for Disease Control and Prevention and other federal systems is "only going to be as good as whatever you can get out of the vaccine registries" that vary by state, said Dr. Marcus Plescia, chief medical officer for the Association of State and Territorial Health Officials. "They're all different and, going into this, they were all at different stages of how robust they were."
There are 64 immunization registries in the United States that gather information for states, territories and a handful of large cities — and they aren't connected. Meanwhile, real-time data in the U.S. public health system is virtually nonexistent, Plescia said.
Reporters at KHN examined the data being gathered versus what the CDC says is supposed to be collected for every person vaccinated, which includes: name, address, sex, date of birth, race and ethnicity, the date and location where they were vaccinated, and the shot they received (currently only two products are available, from Pfizer-BioNTech and Moderna). Not on its list: occupation, even though initial vaccine distribution largely hinges on place of work, prioritizing healthcare personnel, long-term care facilities and then other essential workers such as teachers, grocery store workers and firefighters.
Dr. Katherine Poehling, a pediatrician at the Wake Forest School of Medicine who's on the CDC advisory committee that issued vaccine priority recommendations, declined to comment on whether occupation should have been a required element for reporting to the CDC.
"I think you can always wish for more data, but really what we're going for is vaccinating everybody that wants to be vaccinated," she said. "The fact that there was something available on day one was really remarkable," she said, referring to a database that could track vaccine shipments and allocations by state.
Still, gaps are evident, including holes in CDC rules for reporting race and ethnicity. Race and ethnicity information are missing from at least hundreds of thousands of vaccine doses that have already been administered and reported to state public health authorities.
Texas' vaccine data on Wednesday showed that race or ethnicity was unknown for more than 700,000 people. Virginia's dashboard shows that data was missing for nearly 300,000 vaccinations, or 52% of vaccine doses, as of Tuesday. The same was true for tens of thousands of vaccinations in Colorado and Maryland.
In Minnesota, state law prohibits the sharing of data on race and ethnicity.
"It is important how many shots are administered, but it is critical that we get good race and ethnicity information about who is receiving it so we can identify disparities and other problems," said Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists.
The CDC declined to say how many of the vaccine records it had received were missing the information. In response to questions, CDC spokesperson Kristen Nordlund said the agency plans to publish race, ethnicity and other demographic data next week.
The Department of Health and Human Services did not respond to multiple requests for comment.
Dr. Marcella Nunez-Smith, chair of the Biden administration's covid-19 health equity task force, on Wednesday conceded that the racial and ethnicity data is "incomplete" but said it wasn't the only way to gauge progress of the vaccine rollout on the ground.
"We can think about things like neighborhoods and communities as metrics and ways to track as well," she said. "We're building our equity dashboard right now, and we'll rely on government sources as well as sources of data external to government."
The ongoing struggle for complete data shows how little has changed for the CDC since the virus appeared in the U.S. one year ago and its early efforts to collect data identifying covid-infected people were widely panned.
So far, the CDC has publicly stated how many vaccines have been distributed nationwide and how many doses administered. Its dashboard includes a breakdown of how many shots have been given by state and in long-term care facilities. Walgreens and CVS together have given more than 2.5 million doses in nursing homes and other long-term care facilities, though neither company has released data on race or whether the shots were given to patients or staffers.
State and federal health officials know where vaccines go as officials must track inventory by facility. Several states have released breakdowns of doses administered by the type of institution, providing a window into how many shots are being used in hospitals, nursing homes, pharmacies, primary care practices, public health departments and tribal health sites. And when signing up for an appointment, individuals may be asked to provide their occupation to attest they qualify for a shot under a state's rules at a given time.
Maryland and Ohio require providers to submit data on the occupations of vaccine recipients, in a break with CDC practice. But several states contacted by KHN said they do not collect that information, such as Idaho, Michigan, Minnesota, Texas and Virginia.
Electronic health records manufacturers that provide software to hospitals and other facilities said they are scrambling to modify the software to accommodate data reporting requirements that vary by state.
Occupation is one example. Another: Texas law requires the state to collect information on all medications given "in response to a declared disaster or public health emergency," said State Health Services spokesperson Chris Van Deusen.
Leigh Burchell, vice president of policy and government affairs at the EHR firm Allscripts, said these variations are "obstacles none of us has tackled before," though she thinks that, overall, "successes outweigh failures" as companies have had to adjust quickly during the pandemic.
EHR systems can connect to state registries, which ultimately send vaccine tracking data to the CDC. A lack of "a coordinated, national public health infrastructure" continues to be a problem that "forces everyone to work less efficiently than would be optimal," Burchell said.
Health IT consultant Reed Gelzer said the situation reflects the 30-year-plus failure of the public health system to modernize data collection. He said officials need look no further than chronic problems tracking childhood immunizations, handled in some states at the county level, and in others at the state level, often poorly. A national system to track immunizations has never existed, which he argues should have been discussed before the vaccine rollout.
"As far as I know, even in the earliest days of the pandemic, nobody did stress-testing of the information system," Gelzer said.
Cerner, a major electronic health records company, says that some hospitals are using an existing workplace health system to track employees who have been vaccinated while others create a patient record for vaccinated employees as well as for patients. The systems can capture demographic details, but the data fields to do that have to be turned on and it's unclear whether its client hospitals have done so.
The CDC and other federal agencies rely on a complicated web of systems to get data about who's been vaccinated. State and local vaccine registries, known as immunization information systems, are the most comprehensive source of records and the "source of truth," Hannan said.
Those registries have long-standing connections to providers' electronic health records, said Rebecca Coyle, executive director of the American Immunization Registry Association. But they aren't meant to capture certain information, such as a patient's medical history and occupation.
Those state and local registries transmit data to an HHS-owned clearinghouse, where personal details are redacted.
The clearinghouse gets data from other sources, too. These include a new CDC vaccination clinic mobile app called VAMS, as well as pharmacies, prisons and federal agencies like the Department of Veterans Affairs and the Indian Health Service.
A limited slice of the data then moves to another CDC repository known as the "Data Lake," where it can be analyzed and reported to the CDC and Tiberius, a separate software platform developed by federal contractor Palantir for former President Donald Trump's Operation Warp Speed effort. The Data Lake also receives information on shipment and vaccine orders from the CDC's VTrckS system.
On top of that dizzying array of tools, many states use another, third-party software system, PrepMod, to manage vaccine inventory, appointments and reporting.
When asked whether not having data on occupations could hinder tracking whether priority groups have received their shots, Nordlund of the CDC said it's unnecessary to vaccinate all individuals in one phase before initiating the next.
"This means ideally hitting a sweet spot that maximizes getting vaccine into arms while also being mindful of the priority groups," Nordlund said, "especially because these are people who are higher risk for complications from covid-19 or are more likely to be exposed to the virus because of their jobs."
Lawmakers recently attempted to address the nation's antiquated public health data infrastructure, partly by appropriating $500 million under the CARES Act to the CDC. In an August letter to Rep. Lucy McBath (D-Ga.), former CDC director Dr. Robert Redfield said the agency would use the funds to update how state and health departments report data to federal officials, improve the CDC's own data infrastructure, and develop new standards for public health reporting.
Additionally, tucked into the massive year-end spending bill Congress passed in late December was a requirement that HHS expand and improve public health data systems used by the CDC and award grants to state and local health departments to upgrade their infrastructure.
The Biden administration has made promises to strengthen the federal government's approach to data collection on vaccination efforts.
KHN data reporter Hannah Recht and KHN correspondent Lauren Weber contributed to this report.
The covid-19 variants that have emerged in the United Kingdom, Brazil, South Africa and now Southern California are eliciting two notably distinct responses from U.S. public health officials.
First, broad concern. A variant that wreaked havoc in the U.K., leading to a spike in cases and hospitalizations, is surfacing in a growing number of places in the U.S. This week, another worrisome variant seen in Brazil surfaced in Minnesota. If these or other strains significantly change the way the virus transmits and attacks the body, as scientists fear they might, they could cause yet another prolonged surge in illness and death in the U.S., even as cases have begun to plateau and vaccines are rolling out.
On the other hand, variants aren't novel or even uncommon in viral illnesses. The viruses that trigger common colds and flus regularly evolve. Even if a mutated strain of SARS-CoV-2, the virus that causes covid, makes it more contagious or makes people sicker, the basic public health response stays the same: Monitor the virus, and any mutations, as it moves across communities. Use masking, testing, physical distancing and quarantine to contain the spread.
The problem is that the U.S. has struggled with every step of its public health response in its first year of battle against covid-19. And that raises the question of whether the nation will devote the attention and resources needed to outflank the virus as it evolves.
Researchers are quick to stress that a coronavirus mutation in itself is no cause for alarm. In the course of making millions and billions of copies as part of the infection process, small changes to a virus's genome happen all the time as a function of evolutionary biology.
"The word 'variant' and the word 'mutation' have these scary connotations, and they aren't necessarily scary," said Kelly Wroblewski, director of infectious disease programs for the Association of Public Health Laboratories.
When a mutation rings public health alarms, it's typically because it has combined with other mutations and, collectively, changed how the virus behaves. At that point, it may be named a variant. A variant can make a virus spread faster, or more easily jump between species. It can make a virus more successful at making people sicker, or change how our immune systems respond.
SARS-CoV-2 has been mutating for as long as we've known about it; mutations were identified by scientists throughout 2020. Though relevant scientifically — mutations can actually be helpful, acting like a fingerprint that allows scientists to track a virus's spread — the identified strains mostly carried little concern for public health.
Then came the end of the year, when several variants began drawing scrutiny. One of the most concerning, first detected in the United Kingdom, appears to make the virus more transmissible. Emerging evidence suggests it also could be deadlier, though scientists are still debating that.
We know more about the U.K. variant than others not because it's necessarily worse, but because the British have one of the best virus surveillance programs in the world, said William Hanage, an epidemiologist and a professor at Harvard University.
By contrast, the U.S. has one of the weakest genomic surveillance programs of any rich country, Hanage said. "As it is, people like me cobble together partnerships with places and try and beg them" for samples, he said on a recent call with reporters.
Other variant strains were identified in South Africa and Brazil, and they share some mutations with the U.K. variant. That those changes evolved independently in several parts of the world suggests they might present an evolutionary advantage for the virus. Yet another strain was recently identified in Southern California and flagged due to its increasing presence in hard-hit cities like Los Angeles.
The Southern California strain was detected because a team of researchers at Cedars-Sinai, a hospital and research center in Los Angeles, has unfettered access to patient samples. They were able to see that the strain made up a growing share of cases at the hospital in recent weeks, as well as among the limited number of other samples haphazardly collected at a network of labs in the region.
Not only does the U.S. do less genomic sequencing than most wealthy countries, but it also does its surveillance by happenstance. That means it takes longer to detect new strains and draw conclusions about them. It's not yet clear, for example, whether that Southern California strain was truly worthy of a press release.
Vast swaths of America's privatized and decentralized system of healthcare aren't set up to send samples to public health or academic labs. "I'm more concerned about the systems to detect variants than I am these particular variants," said Mark Pandori, director of Nevada's public health laboratory and an associate professor at the University of Nevada-Reno School of Medicine.
Limited genomic surveillance of viruses is yet another side effect of a fragmented and underfunded public health system that's struggled to test, track contacts and get covid under control throughout the pandemic, Wroblewski said.
The nation's public health infrastructure, generally funded on a disease-by-disease basis, has decent systems set up to sequence flu, foodborne illnesses and tuberculosis, but there has been no national strategy on covid. "To look for variants, it needs to be a national picture if it's going to be done well," Wroblewski said.
Last week, the Biden administration outlined a strategy for a national response to covid, which included expanded surveillance for variants.
So far, vaccines for covid appear to protect against the known variants. Moderna has said its vaccine is effective against the U.K. and South African strains, though it yields fewer antibodies in the face of the latter. The company is working to develop a revised dose of the vaccine that could be added to the current two-shot regimen as a precaution.
But a lot of damage can be done in the time it will take to roll out the current vaccine, let alone an update.
Even with limited sampling, the U.K. variant has been detected in more than two dozen U.S. states, and the Centers for Disease Control and Prevention has warned it could be the predominant strain in the U.S. by March. When it took off in the United Kingdom at the end of last year, it caused a swell in cases, overwhelmed hospitals and led to a holiday lockdown. Whether the U.S. faces the same fate could depend on which strains it is competing against, and how the public behaves in the weeks ahead.
Already risky interactions among people could, on average, get a little riskier. Many researchers are calling for better masks and better indoor ventilation. But any updates on recommendations likely would play at the margins. Even if variants spread more easily, the same recommendations public health experts have been espousing for months — masking, physical distancing and limiting time indoors with others — will be the best way to ward them off, said Dr. Kirsten Bibbins-Domingo, a physician and professor at the University of California-San Francisco.
"It's very unsexy what the solutions are," Bibbins-Domingo said. "But we need everyone to do them."
That doesn't make the task simple. Masking remains controversial in many states, and the public's patience for maintaining physical distance has worn thin.
Adding to the concerns: Though case numbers have stabilized in many parts of the U.S. in recent weeks, they have stabilized at rates many times what they were during previous periods in the pandemic or in other parts of the world. Having all that virus in so many bodies creates more opportunities for new mutations and new variants to emerge.
"If we keep letting this thing sneak around, it's going to get around all the measures we take against it, and that's the worst possible thing," said Nevada's Pandori.
Compared with less virulent strains, a more contagious variant likely will require that more people be vaccinated before a community can see the benefits of widespread immunity. It's a bleak outlook for a nation already falling behind in the race to vaccinate enough people to bring the pandemic under control.
"When your best solution is to ask people to do the things that they don't like to do anyway, that's very scary," said Bibbins-Domingo.
A dozen states are reporting drops of 25% or more in new covid-19 cases and more than 1,200 counties have seen the same, federal data released Wednesday shows. Experts say the plunge may relate to growing fear of the virus after it reached record-high levels, as well as soaring hopes of getting vaccinated soon.
Nationally, new cases have dropped 21% from the prior week, according to Department of Health and Human Services data, reflecting slightly more than 3,000 counties. Corresponding declines in hospitalization and death may take days or weeks to arrive, and the battle against the deadly virus rages on at record levels in many places.
Health officials, data modeling experts and epidemiologists agreed it's too early to see a bump from the vaccine rollout that started with healthcare workers in late December and has, in many states, moved on to include older Americans.
Instead, they said, the factors involved are more likely behavior-driven, with people settling back home after the holidays, or reacting to news of hospital beds running out in places like Los Angeles. Others are finding the resolve to wear masks and physically distance with the prospect of a vaccine becoming more immediate.
A single reason is hard to pinpoint, said Adriane Casalotti, chief of government and public affairs for the National Association of County and City Health Officials. She said it may be due in part to people hoping to avoid the new, more contagious variants of the virus, which some experts say appear to be deadlier as well.
She also said so many people got sick in the last surge that more people may be taking precautions: "There's a better chance you know someone who had it," Casalotti said.
Eva Lee, a mathematician and engineering professor at the Georgia Institute of Technology, works on models predicting covid patterns. She said in an email that the decline reflects the natural course of the virus as it infects a social web of people, exhausts that cluster, dies down and then emerges in new groups.
She also said the national trend, with even steeper drops in California, also reflects restrictions in that state, which included closing indoor dining and a 10 p.m. curfew in hard-hit regions. She said those measures take a few weeks to show up in new-case data.
"It is a very unstable equilibrium at the moment," Lee wrote in the email. "So any premature celebration would lead to another spike, as we have seen it time and again in the US."
Four California counties were among the five large U.S. counties seeing the steepest case drops, including Los Angeles County, where new cases declined nearly 40% in the week ending Jan. 25, compared with the week before.
Dr. Karin Michels, chair of epidemiology at the UCLA Fielding School of Public Health, said the lower numbers in L.A. after the virus infected 1 in 8 county residents likely mirror what happened after New York City's surge: People got very scared and changed their behavior.
"People are beginning to understand we really need to get our act together in L.A., so that helps," she said. "The big fear [now] is 'Is it really going in this direction, is it plateauing, or where is it going to go?' We need to go further down, because it is really high."
Michels said herd immunity would not explain the declines, since we're nowhere near the level of 70% of the population having had the disease or been vaccinated. She said the declines may also reflect a drop in testing, as Dodger Stadium has been converted from a mass testing site to a mass vaccination center.
Officials with the California Department of Public Health acknowledged that testing has fallen off, but overall rates of positive covid tests are falling, suggesting the change is real.
New cases also fell significantly in Wyoming, Oregon, South Dakota and Utah, with each state recording at least 30% fewer new cases. Each of those states reported having vaccinated 8% or more of their adult population by Tuesday, putting them among the top 20 states in terms of vaccination rate.
Alaska leads the states currently, at nearly 15%, according to HHS. It's also logged a new-case drop of 24% in recent days.
Yet experts aren't willing to say yet that the vaccines are driving cases down.
"Most people in public health don't think we'll see the benefit of the vaccine until a few months from now," said Dr. Marcus Plescia, chief medical officer of the Association of State and Territorial Health Officials.
The number of deaths continues to remain high weeks after high case rates as the virus variably attacks the heart, kidneys, lungs and nervous system. Many patients remain unconscious and on a ventilator for weeks as doctors search for signs of improvement.
The death rate fell by only 5% in the data posted Wednesday, reflecting 21,790 patients who died of the virus Jan. 19-25.
Anxiety about new strains of the virus from the U.K., Brazil and South Africa remains high in Portland's Multnomah County, Oregon, which saw a drastic 43% new-case decline in recent days.
"The concern is that everything could change," said Kate Yeiser, spokesperson for the Multnomah County Health Department.
While the $900 billion that lawmakers included for urgent pandemic relief got most of the attention, some even bigger changes for healthcare were buried in the other parts of that huge legislative package.
This article was published on Thursday, January 28, 2021 in Kaiser Health News.
By Emmarie Huetteman Late last month, before President Joe Biden took office and proposed his pandemic relief plan, Congress passed a nearly 5,600-page legislative package that provided some pandemic relief along with its more general allocations to fund the government in 2021.
While the $900 billion that lawmakers included for urgent pandemic relief got most of the attention, some even bigger changes for healthcare were buried in the other parts of that huge legislative package.
The bundle included a ban on surprise medical bills, for example — a problem that key lawmakers had been wrestling with for two years. Starting in 2022, because of the new law, patients generally will not pay more for out-of-network care in emergencies and at otherwise in-network facilities.
But surprise bills weren't the only healthcare issue Congress addressed as it ended a tumultuous year. Lawmakers also answered pleas from strained health facilities in rural areas, agreed to cover the cost of training more new doctors, sought to strengthen efforts to equalize mental health coverage with that of physical medicine and instructed the federal government to collect data that could be used to rein in high medical bills.
Here are some details about those big changes Congress made in December.
Rural Hospitals Get a Boost
Throwing a lifeline to struggling rural health systems — and, it appears, a bone to an outgoing congressional committee chairman — lawmakers gave rural hospitals a way to get paid by Medicare for their services regardless of whether they have patients in beds.
The law creates a new category of provider, known as a "rural emergency hospital." Starting in 2023, some hospitals will qualify for this designation by maintaining full-time emergency departments, among other criteria, without being required to provide in-patient care. The Department of Health and Human Services will determine how the program is implemented and which services are eligible.
Medicare, the federal insurance program that covers more than 61 million Americans 65 and older or with certain disabilities, currently does not reimburse hospitals for emergency or hospital outpatient services unless the hospital also offers in-patient care.
That requirement has exacerbated financial problems for rural hospitals, many of which balance serving communities with fewer patients — and less need for full in-patient services — with the need for emergency and outpatient services. One study last year found 120 rural hospital facilities had closed in the past 10 years, with more at risk.
Hospital groups have praised the change, which was introduced by Sen. Chuck Grassley (R-Iowa), who has championed rural health issues and ended his term as chairman of the Senate Finance Committee this month. "I worked to ensure rural America would not go overlooked," he said in a statement.
Medicare Invests in More Doctors
Hoping to address a national shortage of doctors that has reached critical levels during the pandemic, Congress created an additional 1,000 residency positions over the next five years.
Medicare will fund the positions, which involve supervised training to medical school graduates going into specialties like emergency medicine and are distributed among hospitals most in need of personnel, including rural hospitals.
Critics like The Wall Street Journal's editorial board have noted this is Congress' attempt to fix a problem it created in the late 1990s, when lawmakers capped the number of Medicare-funded residency positions in the United States, fearing too many doctors would inflate the cost of Medicare.
While Medicare is not the only source of educational funding and hospitals may add their own residency slots as needed, Medicare generally will reimburse hospitals for the number of residents they had at the end of 1996. Among other consequences of that 1996 cap, most Medicare-funded residencies are clumped at Northeastern hospitals, a 2014 study showed.
In contrast to the 1,000 positions created as part of the stimulus package, one bipartisan proposal in 2019 that was never enacted would have added up to 15,000 positions over five years.
Strengthening Mental Health Parity
The legislative package strengthens protections for mental health coverage, requiring federal officials to study the limitations insurance companies place on coverage for mental health and substance use disorder treatments.
In 1996 Congress passed the first law barring health insurers from passing along more of the cost for mental healthcare to patients than they would for medical or surgical care. The Affordable Care Act, building on earlier laws, made mental health and substance use disorder treatments an "essential health benefit" — in other words, it required most health insurance plans to cover mental healthcare.
But enforcing that standard has been a challenge, in part because violations can be hard to spot and the system has often relied on patients to notice — and report — them.
In December, lawmakers approved a measure requiring insurers to analyze their coverage and provide their findings to state and federal officials upon request.
They also instructed federal officials to request the findings from at least 20 plans per year that may have violated mental health parity laws and tell insurers how to correct any problems they find — under penalty of having insurer violations reported to their customers if they do not comply.
The law requires federal officials to publish an annual report summarizing the analyses they collect.
More Transparency in Cost and Quality
Americans often do not know how much they will be expected to pay when they enter a doctor's office, an ambulance or an emergency room.
Taking another modest step toward transparency, Congress banned so-called gag clauses in contracts between health insurers and providers.
Among other things, these sorts of "gag" restrictions previously have prevented insurers and group health plans from sharing with patients and others — such as employers — information about a provider's prices or quality. The December legislation also prohibited insurers from agreeing to contracts that prevent them from getting access electronically to claims and other information from providers on behalf of the insurer's enrollees.
In 2018, Congress banned gag clauses in contracts between pharmacies and insurers or pharmacy benefit managers. Those gag clauses had prevented pharmacists from sharing cost information with patients, like whether they could pay a lower price for a prescription by paying out-of-pocket rather than using their insurance coverage.
The proposal approved in December's legislation came from a big, bipartisan package of healthcare cost fixes passed in 2019 by the Senate Health, Education, Labor and Pensions Committee, but not by the rest of Congress. The committee's Republican chairman, Sen. Lamar Alexander of Tennessee, retired from Congress this month. His Democratic partner on that package, Sen. Patty Murray of Washington, will take over the chairmanship as Democrats assume control of the Senate and has vowed to focus on healthcare affordability.
Consumers First, a health consumer-focused alliance of health professionals, labor unions and others, led by Families USA, praised the ban. The change is "a significant step forward" to stop "the abusive practices from hospitals and health systems and other segments of the healthcare sector that are driving up healthcare costs and making healthcare unaffordable for our nation's families, workers, and employers," it said in a statement.
KHN senior correspondent Sarah Jane Tribble contributed to this report.
Experts’ advice may be helpful since states are beginning to offer vaccines to adults over age 65, 70 or 75, including those with serious underlying medical conditions.
This article was published on Wednesday, January 27, 2021 in Kaiser Health News. This story also ran on CNN.
As public demand grows for limited supplies of covid-19 vaccines, questions remain about the vaccines’ appropriateness for older adults with various illnesses. Among them are cancer patients receiving active treatment, dementia patients near the end of their lives and people with autoimmune conditions.
Recently, a number of readers have asked me whether older relatives with these conditions should be immunized. This is a matter for medical experts, and I solicited advice from several. All strongly suggested that people with questions contact their doctors and discuss their individual medical circumstances.
Experts’ advice may be helpful since states are beginning to offer vaccines to adults over age 65, 70 or 75, including those with serious underlying medical conditions. Twenty-eight states are doing so, according to the latest survey by The New York Times.
Q: My 80-year-old mother has chronic lymphocytic leukemia. For weeks, her oncologist would not tell her “yes” or “no” about the vaccine. After much pressure, he finally responded: “It won’t work for you, your immune system is too compromised to make antibodies.” She asked if she can take the vaccine anyway, just in case it might offer a little protection, and he told her he was done discussing it with her.
First, some basics. Older adults, in general, responded extremely well to the two covid-19 vaccines that have received special authorization from the Food and Drug Administration. In large clinical trials sponsored by drugmakers Pfizer and Moderna, the vaccines achieved substantial protection against significant illness, with efficacy for older adults ranging from 87% to 94%.
But people 65 and older undergoing cancer treatment were not included in these studies. As a result, it’s not known what degree of protection they might derive.
Dr. Tobias Hohl, chief of the infectious diseases service at Memorial Sloan Kettering Cancer Center in New York City, suggested that three factors should influence patients’ decisions: Are vaccines safe, will they be effective, and what is my risk of becoming severely ill from covid-19? Regarding risk, he noted that older adults are the people most likely to become severely ill and perish from covid, accounting for about 80% of deaths to date — a compelling argument for vaccination.
Regarding safety, there is no evidence at this time that cancer patients are more likely to experience side effects from the Pfizer-BioNTech and Moderna vaccines than other people. Generally, “we are confident that these vaccines are safe for [cancer] patients,” including older patients, said Dr. Armin Shahrokni, a Memorial Sloan Kettering geriatrician and oncologist.
The exception, which applies to everyone, not just cancer patients: people who are allergic to covid-19 vaccine components or who experience severe allergic responses after getting a first shot shouldn’t get covid-19 vaccines.
Efficacy is a consideration for patients whose underlying cancer or treatment suppresses their immune systems. Notably, patients with blood and lymph node cancers may experience a blunted response to vaccines, along with patients undergoing chemotherapy or radiation therapy.
Even in this case, “we have every reason to believe that if their immune system is functioning at all, they will respond to the vaccine to some extent,” and that’s likely to be beneficial, said Dr. William Dale, chair of supportive care medicine and director of the Center for Cancer Aging Research at City of Hope, a comprehensive cancer center in Los Angeles County.
Balancing the timing of cancer treatment and immunization may be a consideration in some cases. For those with serious disease who “need therapy as quickly as possible, we should not delay [cancer] treatment because we want to preserve immune function and vaccinate them” against covid, said Hohl of Memorial Sloan Kettering.
One approach might be trying to time covid vaccination “in between cycles of chemotherapy, if possible,” said Dr. Catherine Liu, a professor in the vaccine and infectious disease division at Fred Hutchinson Cancer Research Center in Seattle.
In new guidelines published late last week, the National Comprehensive Cancer Network, an alliance of cancer centers, urged that patients undergoing active treatment be prioritized for vaccines as soon as possible. A notable exception: Patients who’ve received stem cell transplants or bone marrow transplants should wait at least three months before getting vaccines, the group recommended.
The American Cancer Society’s chief medical and scientific officer, Dr. William Cance, said his organization is “strongly in favor of cancer patients and cancer survivors getting vaccinated, particularly older adults.” Given vaccine shortages, he also recommended that cancer patients who contract covid-19 get antibody therapies as soon as possible, if their oncologists believe they’re good candidates. These infusion therapies, from Eli Lilly and Co. and Regeneron Pharmaceuticals, rely on synthetic immune cells to help fight infections.
Q: Should my 97-year-old mom, in a nursing home with dementia, even get the covid vaccine?
The federal government and all 50 states recommend covid vaccines for long-term care residents, most of whom have Alzheimer’s disease or other types of cognitive impairment. This is an effort to stem the tide of covid-related illness and death that has swept through nursing homes and assisted living facilities — 37% of all covid deaths as of mid-January.
The Alzheimer’s Association also strongly encourages immunization against covid-19, “both for people [with dementia] living in long-term care and those living in the community, said Beth Kallmyer, vice president of care and support.
“What I think this question is trying to ask is ‘Will my loved one live long enough to see the benefit of being vaccinated?’” said Dr. Joshua Uy, medical director at a Philadelphia nursing home and geriatric fellowship director at the University of Pennsylvania’s Perelman School of Medicine.
Potential benefits include not becoming ill or dying from covid-19, having visits from family or friends, engaging with other residents and taking part in activities, Uy suggested. (This is a partial list.) Since these benefits could start accruing a few weeks after residents in a facility are fully immunized, “I would recommend the vaccine for a 97-year-old with significant dementia,” Uy said.
Minimizing suffering is a key consideration, said Dr. Michael Rafii, associate professor of clinical neurology at the University of Southern California’s Keck School of Medicine. “Even if a person has end-stage dementia, you want to do anything you can to reduce the risk of suffering. And this vaccine provides individuals with a good deal of protection from suffering severe covid,” he said.
“My advice is that everyone should get vaccinated, regardless of what stage of dementia they’re in,” Rafii said. That includes dementia patients at the end of their lives in hospice care, he noted.
If possible, a loved one should be at hand for reassurance since being approached by someone wearing a mask and carrying a needle can evoke anxiety in dementia patients. “Have the person administering the vaccine explain who they are, what they’re doing and why they’re wearing a mask in clear, simple language,” Rafii suggested.
Q: I’m 80 and I have Type 2 diabetes and an autoimmune disease. Should I get the vaccine?
There are two parts to this question. The first has to do with “comorbidities” — having more than one medical condition. Should older adults with comorbidities get covid vaccines?
Absolutely, because they’re at higher risk of becoming seriously ill from covid, said Dr. Abinash Virk, an infectious diseases specialist and co-chair of the Mayo Clinic’s covid-19 vaccine rollout.
“Pfizer’s and Moderna’s studies specifically looked at people who were older and had comorbidities, and they showed that vaccine response was similar to [that of] people who were younger,” she noted.
The second part has to do with autoimmune illnesses such as lupus or rheumatoid arthritis, which also put people at higher risk. The concern here is that a vaccine might trigger inflammatory responses that could exacerbate these conditions.
Philippa Marrack, chair of the department of immunology and genomic medicine at National Jewish Health in Denver, said there’s no scientifically rigorous data on how patients with autoimmune conditions respond to the Pfizer and Moderna vaccines.
So far, reasons for concern haven’t surfaced. “More than 100,000 people have gotten these vaccines now, including some who probably had autoimmune disease, and there’s been no systematic reporting of problems,” Marrack said. If patients with autoimmune disorders are really worried, they should talk with their physicians about delaying immunization until other covid vaccines with different formulations become available, she suggested.
Last week, the National Multiple Sclerosis Society recommended that most patients with multiple sclerosis — another serious autoimmune condition — get the Pfizer or Moderna covid vaccines.
“The vaccines are not likely to trigger an MS relapse or to worsen your chronic MS symptoms. The risk of getting COVID-19 far outweighs any risk of having an MS relapse from the vaccine,” it said in a statement.
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