As the omicron variant completes its sweep across the U.S., states with scarce supplies of monoclonal antibody therapies continue to use two treatments that federal health officials warn no longer work against the highly contagious version of the virus that causes COVID-19. The antibody treatment now most recommended is sotrovimab from GlaxoSmithKline and Vir Biotechnology, and it's in short supply.
Use of the newly ineffective treatments produced by Regeneron Pharmaceuticals and Eli Lilly and Co. is highest in a dozen states. They include several Southern states with some of the nation's lowest vaccination rates, but also California, which ranks in the nation's top 20 for fully vaccinated residents, a KHN analysis of federal data shows. Many hospitals and clinics are still infusing the costly treatments — often charging hundreds of dollars a session — that public health officials now say are almost certainly useless.
That's because of the near-total dominance of omicron, which accounted for 99.5% of new COVID infections in the U.S. during the week that ended Jan. 15, according to the Centers for Disease Control and Prevention.
That point was underscored this week by updated guidelines from the National Institutes of Health that now recommend sotrovimab as the primary monoclonal treatment for the disease.
Unless providers are certain they are still treating patients infected with the delta variant, they shouldn't use the others, said Dr. Mark McClellan, director of the Duke-Margolis Center for Health Policy, who is also a former commissioner of the FDA and former administrator of CMS. And the delta variant is increasingly rare, accounting for 3% of cases in Louisiana, 7% in California, and 10% in Ohio, as examples.
"There's not a medical justification based on the evidence on the Regeneron and Lilly products," McClellan said.
Determining which patients are infected with the delta vs. omicron variant is complicated, said Dr. Christian Ramers, chief of population health and an infectious disease specialist at Family Health Centers of San Diego.
His clinic is one of the few sites in the nation using laboratory screening of positive PCR COVID tests that can tell whether patients are infected with delta vs. omicron — and then treating them accordingly. "Otherwise, you're giving this false sense of security to a patient that they're getting treatment," Ramers said. "I don't think it is ethical, and it goes against the principle of doing no harm."
Overall, U.S. hospitals used about 72,000 doses of the Regeneron and Lilly monoclonal antibody therapies from Jan. 5 through Jan. 18, according to the latest figures from the Department of Health and Human Services. Data regarding hospital-level use of sotrovimab, which became available more recently than the other products, is not yet available on the HHS site.
By comparison, hospitals used about 153,000 courses of the Regeneron and Lilly treatments from Dec. 22 through Jan. 4. They used about 169,000 courses from Aug. 26 through Sept. 8, near the height of the delta surge.
On Jan. 19, hospitals still had about 295,000 doses of the Regeneron and Lilly treatments on hand.
Nationwide, the federal government is distributing more than 50,000 courses of sotrovimab per week, though it remains in short supply. The Biden administration has agreed to buy about 1 million doses, including about 600,000 promised by March, GSK officials said.
Respectively, Michigan, Florida, Indiana, Missouri, Louisiana, California, Oklahoma, Kansas, Georgia, Ohio, New York, and Mississippi used the most courses of the Regeneron and Lilly treatments from Jan. 5 through Jan. 18, KHN's analysis showed.
In Florida, which used more than 5,200 courses of the outdated treatments during that two-week period, Republican Gov. Ron DeSantis has said he is not convinced that the Regeneron and Lilly products don't work against omicron. In Florida, omicron accounted for 97% of cases as of Jan. 20; delta accounted for 3%.
"We have had practitioners give both of those to people with omicron who said the symptoms got resolved," he said in a Jan. 5 speech provided by his spokesperson, Christina Pushaw.
Federal health officials managing allocation of the monoclonal antibody therapies paused shipments of the Regeneron and Lilly treatments on Dec. 23, after laboratory tests showed they were less effective against the surging omicron variant than the delta variant. But the Biden administration resumed shipments on Dec. 31, after complaints from DeSantis and some doctors that those therapies could still help people in places where the delta variant persisted.
Regeneron itself has said its antibody treatments are ineffective against the omicron variant. It contains more than 30 mutations in the virus's spike protein, which makes the variant better at dodging the monoclonal antibody treatments.
"It's really not justified at this point unless there's some other underlying secondary gain, political pressure, or perhaps the providers are truly not in touch with the reality of the variant proportions," Ramers said.
Earlier this month, HHS officials indicated that shipments of the three monoclonal antibody treatments would continue through Jan. 31, despite the growing proportion of omicron cases. A department spokesperson on background said the agency would continue to assess "any impacts to COVID-19's therapeutic allocations."
Monoclonal antibody treatments are lab-based molecules that mimic the body's immune response to infection. They are most often given through IV infusion, though some can be delivered with an injection. The federal government has agreed to purchase millions of doses of the Regeneron and Lilly products at a cost of about $2,100 per dose. The medicines are free to consumers, though hospitals and clinics do charge fees for administering the drugs and monitoring patients during the process.
Other treatments expected to be effective against omicron in high-risk, non-hospitalized patients include AstraZeneca's Evusheld, a long-acting injectable monoclonal antibody for immunocompromised people, and a three-day infusion of Gilead Sciences' remdesivir, which is approved by the FDA. New oral antiviral pills also are expected to be effective, although they, too, remain in short supply.
Providers in several states that have continued to use the Regeneron and Lilly products have offered varied reasons. Some said they believed delta infections continued to circulate locally; others said they felt desperate to try something.
Officials in Michigan, which used more than 5,800 doses of the Regeneron and Lilly products during the most recent two weeks, and California, which used more than 3,400, have allowed healthcare providers to use their clinical judgment about which treatment to prescribe.
But in Mississippi, where omicron is rampant and fewer than half of residents have been fully vaccinated, state health officer Dr. Thomas Dobbs called for an end to the use of the treatments.
"We will be recommending that clinicians and physicians do not use these products right now based on the distribution of omicron vs. delta," he said during a recent press conference.
At Ramers' clinic in San Diego, care providers have been dispensing scarce doses of the monoclonal antibody treatments only when they're confident they'll help. That has meant sending batches of positive PCR tests to a laboratory in nearby Irvine, where they are screened to see whether one of three target genes is not detected, a known marker for an omicron infection.
Patients infected with the delta variant were able to be treated with REGEN-COV, the Regeneron product, preserving sotrovimab for the growing number of omicron cases, said Pauline Lucatero, the clinic's director of nursing.
"Looking into my patients' eyes and seeing fear, just fear, all I could tell them is we believe this treatment works and we're going to do everything we can to save as many people as we can," she said.
Phillip Reese, an assistant professor of journalism at California State University-Sacramento, contributed to this report.
A wildfire displaced thousands of Coloradans just as the omicron surge began sweeping through the state, so health insurance was likely not on many people's minds when the regular enrollment period for the state's health insurance marketplace ended Jan. 15. But now, because of those twin emergencies, everyone in the state will get another chance to sign up.
State officials on Wednesday launched a special marketplace enrollment period, through March 16, open to all uninsured Coloradans regardless of whether they've been directly affected by the fire or the COVID-19 surge.
The Marshall Fire started on Dec. 30, just two weeks before the deadline to sign up for a 2022 plan. The fire destroyed more than 1,000 houses and businesses, quickly becoming the state's most destructive fire by number of structures lost.
"It's such a disruption to people's lives," Colorado Insurance Commissioner Michael Conway said. "It's not just the people who lost their homes — it's across the board, affecting the entire community."
Meanwhile, the emergence of the omicron variant of the coronavirus caused COVID cases to spike to record levels in January, stressing hospitals and health systems.
"These folks are just trying to put their lives back together," said Kevin Patterson, CEO of Connect for Health Colorado, the state's health insurance marketplace, created under the Affordable Care Act. "So giving them some additional time seemed like a reasonable and thoughtful thing to consider."
In addition to providing immediate relief to Coloradans in a crisis, the move underscores how much industry attitudes toward the Affordable Care Act have changed. Insurance companies were initially skeptical about the financial risks and worried that consumers would game the system. But the insurers have largely embraced the exchanges and are working to sign up as many people as possible. After experiencing few problems during the special enrollment period held last year because of COVID, health plans have agreed to the removal of safeguards — such as a limited window of time to sign up for coverage — that regulators once required.
"Amid the recent COVID-19 surge and tragic wildfires, it is important that people in Colorado have the opportunity to obtain healthcare coverage," Patrick Gordon, CEO of the Rocky Mountain Health Plans, said in an email.
Special enrollment periods have been used in California because of wildfires, in Maine when strong winds knocked down power lines, and in Gulf states hit by Hurricanes Harvey, Irma, and Maria.
Such periods have often been limited in scope and sometimes required people to provide proof they had been affected.
Colorado state officials are taking a different route. They opted to make signing up for coverage as easy as possible and are not requiring consumers to demonstrate they qualify.
"It didn't seem like something that was necessary, especially when we look at our experience over the last year," Conway said. "The vast majority of the year was effectively a special enrollment period, and there wasn't that much disruption in the market."
Insurance analyst Charles Gaba said there are three primary reasons for limiting health plan sign-ups to an open enrollment period.
The first is that deadlines spur people to sign up. Each year, enrollment numbers spike in the final days of the sign-up period.
Second, insurance companies need time to analyze their revenue and costs to set premiums for the following year. That process, Gaba said, typically begins in March.
Third, and most importantly, insurance companies initially lobbied for a limited open enrollment period to keep people from waiting until they are sick to buy insurance. That changed during the pandemic. Colorado and most other states that run their own exchanges held special enrollment periods in 2020 and 2021 because of COVID. When the Trump administration declined to do the same for the federal exchange, health insurance trade groups urged it to reconsider. The incoming Biden administration agreed and extended the enrollment period through August 2021 — and more than 2.8 million additional Americans signed up for coverage.
Conway said no evidence exists that consumers waited until they were sick to buy coverage last year. With so many consumers eligible for no-cost or low-cost plans because of more generous subsidies, there is little reason for them not to sign up immediately.
"As health policy folks, sometimes we get into our heads and we see monsters under the bed that simply are not there because of the complexity of the system," Conway said.
Health plans in Colorado were largely supportive of the move. John Roble, president of Cigna's Mountain States market, said the company is allowing early prescription refills and is working with local hospitals to transfer patients to help alleviate crowding at overwhelmed facilities.
Past special enrollment periods largely attracted a healthier population than standard open enrollment periods. Those with chronic health conditions, who face the potential of high medical bills, usually enroll early in the standard open enrollment period.
"They are first out of the gate," said Louise Norris, who operates a Colorado health insurance brokerage with her husband. "They're ready to sign up Nov. 1."
The procrastinators are those generally less concerned about their health and more apt to leave things to the last minute, she said. The added time will also help people who chose to go without insurance but then experience a significant medical problem after the standard open enrollment period closes, she said.
State officials said new health concerns stemming from the fires and the omicron surge may also make health coverage more important for some Coloradans.
Consumers benefit when more people, particularly more healthy people, enroll. "The more people that get covered, the more stable the overall risk pool is, the more stable the premiums are for consumers," said Adam Fox, deputy director of the Colorado Consumer Health Initiative, a nonprofit consumer advocacy group. "All of those things help people stay covered."
States that run their own exchanges often extend the deadline for signing up another week or two to give late-comers extra time. But it's not clear whether any other states will follow Colorado's example and provide a two-month or longer window in response to the omicron surge.
"Without the fires, I'm not sure that they would be thinking about it," Conway said.
You can either get a test without any out-of-pocket expense from retail pharmacies that are part of an insurance company's network or buy it at any store and get reimbursed by the insurer.
This article was published on Wednesday, January 19, 2022 in Kaiser Health News.
Americans keep hearing that it is important to test frequently for COVID-19 at home. But just try to find an "at-home" rapid COVID test in a store and at a price that makes frequent tests affordable.
Testing, as well as mask-wearing, is an important measure if the country ever hopes to beat COVID, restore normal routines and get the economy running efficiently. To get Americans cheaper tests, the federal government now plans to have insurance companies pay for them.
The Biden administration announced Jan. 10 that every person with private insurance can get full coverage for eight rapid tests a month. You can either get one without any out-of-pocket expense from retail pharmacies that are part of an insurance company's network or buy it at any store and get reimbursed by the insurer.
Congress said private insurers must cover all COVID testing and any associated medical services when it passed the Families First Coronavirus Response Act and the Coronavirus Aid, Relief and Economic Security, or CARES, Act. The have-insurance-pay-for-it solution has been used frequently through the pandemic. Insurance companies have been told to pay for PCR tests, COVID treatments and the administration of vaccines. (Taxpayers are paying for the cost of the vaccines themselves.) It appears to be an elegant solution for a politician because it looks free and isn't using taxpayer money.
1. Are the tests really free?
Well, no. As many an economist will tell you, there ain't no such thing as a free lunch. Someone has to pick up the tab. Initially, the insurance companies bear the cost. Cynthia Cox, a vice president at KFF who studies the Affordable Care Act and private insurers, said the total bill could amount to billions of dollars. Exactly how much depends on "how easy it is to get them, and how many will be reimbursed," she said.
2. Will the insurance company just swallow those imposed costs?
If companies draw from the time-tested insurance giants' playbook, they'll pass along those costs to customers. "This will put upward pressure on premiums," said Emily Gee, vice president and coordinator for health policy at the Center for American Progress.
Major insurance companies like Cigna, Anthem, UnitedHealthcare and Aetna did not respond to requests to discuss this issue.
3. If that's the case, why haven't I been hit with higher premiums already?
Insurance companies had the chance last year to raise premiums but, mostly, they did not.
Why? Perhaps because insurers have so far made so much money during the pandemic they didn't need to. For example, the industry's profits in 2020 increased 41% to $31 billion from $22 billion, according to the National Association of Insurance Commissioners. The NAIC said the industry has continued its "tremendous growth trend" that started before COVID emerged. Companies will be reporting 2021 results soon.
The reason behind these profits is clear. You were paying premiums based on projections your insurance company made about how much healthcare consumers would use that year. Because people stayed home, had fewer accidents, postponed surgeries and, often, avoided going to visit the doctor or the hospital, insurers paid out less. They rebated some of their earnings back to customers, but they pocketed a lot more.
As the companies' actuaries work on predicting 2023 expenditures, premiums could go up if they foresee more claims and expenses. Paying for millions of rapid tests is something they would include in their calculations.
4. Regardless of my premiums, will the tests cost me money directly?
It's quite possible. If your insurance company doesn't have an arrangement with a retailer where you can simply pick up your allotted tests, you'll have to pay for them — at whatever price the store sets. If that's the case, you'll need to fill out a form to request a reimbursement from the insurance company. How many times have you lost receipts or just plain neglected to mail in for rebates on something you bought? A lot, right?
Here's another thing: The reimbursement is set at $12 per test. If you pay $30 for a test — and that is not unheard of — your insurer is only on the hook for $12. You eat the $18.
And by the way, people on Medicare will have to pay for their tests themselves. People who get their healthcare covered by Medicaid can obtain free test kits at community centers.
A few free tests are supposed to arrive at every American home via the U.S. Postal Service. And the Biden administration has activated a website where Americans can order free tests from a cache of a billion the federal government ordered.
5. Will this help bring down the costs of at-home tests and make them easier to find?
The free COVID tests are unlikely to have much immediate impact on general cost and availability. You will still need to search for them. The federal measures likely will stimulate the demand for tests, which in the short term may make them harder to find.
But the demand, and some government guarantees to manufacturers, may induce test makers to make more of them faster. The increased competition and supply theoretically could bring down the price. There is certainly room for prices to decline since the wholesale cost of the test is between $5 and $7, analysts estimate. "It's a big step in the right direction," Gee said.
Some insurance brokers are enrolling people into Affordable Care Act health plans without their consent, perhaps for the commissions, a move that could put consumers in danger of owing back the subsidies connected with the coverage. The damage could be hundreds or even thousands of dollars.
A consumer's first hint that something is wrong is a big one: a letter from the IRS or a delay in their tax refund.
Although the practice does not appear widespread, it has prompted the Department of Health and Human Services to seek changes to some oversight rules affecting brokers. They would start in 2023.
HHS wants the changes, according to its proposal, because it "has observed several instances in which agents, brokers, and web-brokers have provided inaccurate consumer household income projections" and that "this is problematic in situations when consumers are enrolled without their knowledge or consent."
The changes are part of a 400-page proposed rule governing the federal health insurance marketplace and a few states that use the federal platform for their own exchanges. The new broker provision aims to deter fraudulent sign-ups by clarifying that applicants must attest that the income projections listed are correct. It also would bar brokers or services who help people enroll in coverage from using "disposable" email addresses, which disappear after a set number of days, or listing the brokers' phone numbers instead of the consumers'.
That there is a proposal at all "tells me they had a significant number of cases on this" and that previous actions have not done enough to curb the problem of people getting fraudulently enrolled, said Tara Straw, director of health insurance and marketplace policy at the Center on Budget and Policy Priorities.
A spokesperson for the Centers for Medicare & Medicaid Services said in an email that the agency is not seeing a pervasive problem, but he declined to provide data on how often such cases occur or how the agents or brokers get the personal information needed to enroll unsuspecting people.
Nonetheless, experts in law, policy and enrollment say it has been a recurrent issue. Many cited examples beginning with a 2015 case in which an agent allegedly signed up hundreds of people from North Carolina homeless shelters for plans in which the federal government paid the entire premium, often referred to as "zero-premium plans," by using questionable estimates of their annual income.
Jodi Ray, who oversees a Florida organization that helps people enroll in coverage, said her employees saw cases last year in which clients seeking help with enrollment in a county health plan discovered they were already enrolled in a federal ACA plan but had no idea who had signed them up.
In another example, a partner organization learned that an agent was enrolling people with job-based coverage in subsidized ACA plans, said Ray, director of Florida Covering Kids & Families, a program at the University of South Florida. Such double enrollment is not allowed under the law and could leave the employees on the hook for paying back the subsidies.
"That sets consumers up to be harmed," said Ray, whose office reports these types of findings to state regulators.
She emphasized that the vast majority of brokers and others who help people enroll are honest and protect consumer information carefully but said that the few who do not create distrust among the public. Groups like hers, often called navigators or assisters, have no incentive to falsify enrollments because they are not paid commissions, she said.
But agents, brokers and web-based services are.
"The profit motive is a really important thing to keep in mind as to why this happens at all," said Straw, who noted that insurers pay commissions even on zero-premium plans.
The proposed changes come as government estimates show that at least 42% of people served by the federal health insurance marketplace likely could qualify for a zero-premium plan based on their income.
That might be one factor behind the growing concern about consumers enrolled without their consent — with no monthly bill, consumers have few ways of knowing they're in a plan.
"There are a lot more zero-dollar premium plans available," said Sabrina Corlette, a researcher at Georgetown University's Center on Health Insurance Reforms. Bad actors "can essentially fake an email address or phone number, fake someone's income to say they are eligible for a zero-dollar plan, and the person would never know."
Regulators have seen "several instances where consumers have gone months" without realizing they are enrolled, according to the proposed HHS rule. By that time, their insurers may have been paid hundreds — even thousands — of dollars in subsidies, also called tax credits, which the policyholder might have to pay back if their actual income is above the subsidy threshold.
Under the ACA, sliding-scale subsidies are available to help low- and moderate-income people buy coverage. Those who underestimate their income for the year may owe back all or part of those subsidies, although payback amounts are capped for those in lower income ranges.
Consumers have some recourse. If they are signed up for coverage without their consent, for example, they can appeal to the federal exchange to retroactively cancel their coverage. But they have only 60 days after discovering the fraudulent enrollment to do so.
"It's complicated to fix on the back end," Straw said.
The health insurance marketplaces and insurers, which can lose customers because of such practices, "need to be more proactive on the front end" — for example, asking questions if they notice "a dozen people with the same address or the same telephone number," she said.
Christine Speidel, an associate professor at Villanova University law school and the director of its federal tax clinic, which helps low-income taxpayers with IRS-related concerns, agrees that prevention is better than fixing the problem after the fact.
"When you have a fraudulent enrollment and it's discovered a year or more later, it's a lose-lose situation: The insurer is screaming, and the taxpayer is frustrated and worried that they might be on the hook," said Speidel, who has not seen a recent case of this kind but has previously handled some in which people did not know they had been enrolled in coverage.
Agents who violate the rules set by the federal exchange can be barred from selling coverage through it or face civil monetary penalties, said Kristine Grow, a spokesperson for AHIP, an industry trade group formerly known as America's Health Insurance Plans. States also can revoke agents' licenses.
"Enrolling people in coverage without their consent is fraud, and health insurance providers support protections for consumers against this sort of fraud," she said.
Consumers who seek help when buying insurance should check to make sure the person selling it is licensed because the problems with fraudulent sign-ups "often are from someone not licensed," said Marcy Buckner, senior vice president of government affairs at the National Association of Health Underwriters, which represents brokers.
The group supports additional protections for consumers, she added.
HHS is gathering comments on the proposed rule through Jan. 27.
Pediatricians say the slow pace and geographic disparities are alarming, especially against the backdrop of record numbers of cases and pediatric hospitalizations.
This article was published on Friday, January 14, 2022 in Kaiser Health News.
Two months after Pfizer's COVID vaccine was authorized for children ages 5 to 11, just 27% have received at least one shot, according to Jan. 12 data from the Centers for Disease Control and Prevention. Only 18%, or 5 million kids, have both doses.
The national effort to vaccinate children has stalled even as the omicron variant upends schooling for millions of children and their families amid staffing shortages, shutdowns and heated battles over how to safely operate. Vaccination rates vary substantially across the country, a KHN analysis of the federal data shows. Nearly half of Vermont's 5- to 11-year-olds are fully vaccinated, while fewer than 10% have gotten both shots in nine mostly Southern states.
Pediatricians say the slow pace and geographic disparities are alarming, especially against the backdrop of record numbers of cases and pediatric hospitalizations. School-based vaccine mandates for students, which some pediatricians say are needed to boost rates substantially, remain virtually nonexistent.
"You have these large swaths of vulnerable children who are going to school," said Dr. Samir Shah, a director at Cincinnati Children's Hospital Medical Center. Compounding the problem is that states with low vaccination rates "are less likely to require masking or distancing or other nonpartisan public health precautions," he said.
In Louisiana, where 5% of kids ages 5 to 11 have been fully vaccinated, Gov. John Bel Edwards, a Democrat, added the shot to the list of required school immunizations for the fall, over the objections of state legislators, who are mostly Republicans. The District of Columbia and California, where about 1 in 5 elementary school kids are fully vaccinated, have added similar requirements. But those places are exceptions — 15 states have banned COVID vaccine mandates in K-12 schools, according to the National Academy for State Health Policy.
Mandates are one of multiple "scientifically valid public health strategies," Shah said. "I do think that what would be ideal; I don't think that we as a society have a will to do that."
Vaccine demand surged in November, with an initial wave of enthusiasm after the shot was approved for younger children. But parents have vaccinated younger kids at a slower pace than 12- to 15-year-olds, who became eligible in May. It took nearly six weeks for 1 in 5 younger kids to get their first shot, while adolescents reached that milestone in two weeks.
Experts cite several factors slowing the effort: Because kids are less likely than adults to be hospitalized or die from the virus, some parents are less inclined to vaccinate their children. Misinformation campaigns have fueled concerns about immediate and long-term health risks of the vaccine. And finding appointments at pharmacies or with pediatricians has been a bear.
"One of the problems we've had is this perception that kids aren't at risk for serious illness from this virus," said Dr. Yvonne Maldonado, chair of the American Academy of Pediatrics Committee on Infectious Diseases. "That's obviously not true."
Parents are left to weigh which is more of a threat to their children: the COVID virus or the vaccine to prevent the virus. Overwhelmingly, research shows, the virus itself presents a greater danger.
Kids can develop debilitating long-COVID symptoms or a potentially fatal post-COVID inflammatory condition. And new research from the CDC found that children are at significantly higher risk of developing diabetes in the months after a COVID infection. Other respiratory infections, like the flu, don't carry similar risks.
Katharine Lehmann said she had concerns about myocarditis — a rare but serious side effect that causes inflammation of the heart muscle and is more likely to occur in boys than girls — and considered not vaccinating her two sons because of that risk. But after reading up on the side effects, she realized the condition is more likely to occur from the virus than the vaccine. "I felt safe giving it to my kids," said Lehmann, a physical therapist in Missouri, where 20% of younger kids have gotten at least one dose.
Recent data from scientific advisers to the CDC found that myocarditis was extremely rare among vaccinated 5- to 11-year-olds, identifying 12 reported cases as of Dec. 19 out of 8.7 million administered doses.
The huge variations in where children are getting vaccinated reflect what has occurred with other age groups: Children have been much less likely to get shots in the Deep South, where hesitancy, political views and misinformation have blunted adult vaccination rates as well. Alabama has the lowest vaccination rate for 5- to 11-year-olds, with 5% fully vaccinated. States with high adult vaccine rates such as Vermont, Massachusetts, Connecticut and Maine have inoculated the greatest shares of their children.
Even within states, rates vary dramatically by county based on political leanings, density and access to the shot. More than a quarter of kids in Illinois' populous counties around Chicago and Urbana are fully vaccinated, with rates as high as 38% in DuPage County. But rates are still below 10% in many of the state's rural and Republican-leaning counties. In Maryland, where 1 in 4 kids are fully vaccinated, rates range from more than 40% in Howard and Montgomery counties, wealthy suburban counties, to fewer than 10% along parts of the more rural Eastern Shore.
Nationally, a November KFF poll found that 29% of parents of 5- to 11-year-olds definitely won't vaccinate their children and that an additional 7% would do so only if required. Though rates were similar for Black, white and Hispanic parents, political differences and location divided families. Only 22% of urban parents wouldn't vaccinate their kids, while 49% of rural parents were opposed. Half of Republican parents said they definitely wouldn't vaccinate their kids, compared with just 7% of Democrats.
The White House said officials continue to work with trusted groups to build vaccine confidence and ensure access to shots. "As we've seen with adult vaccinations, we expect confidence to grow and more and more kids to be vaccinated across time," spokesperson Kevin Munoz said in a statement.
The Hunt for Shots
Just before her younger son's 5th birthday, Lehmann was eager to book COVID vaccine appointments for her two boys. But their pediatrician wasn't offering them. Attempts to book time slots at CVS and Walgreens before her son turned 5 were unsuccessful, even if the appointment occurred after his late-November birthday.
"It was not easy," she said. Wanting to avoid separate trips for her 10-year-old and 5-year-old, she nabbed appointments at a hospital a half-hour away.
"Both of my kids have gotten all their vaccines at the pediatrician, so I was kind of shocked. That would have certainly been easier," Lehmann said. "And the kids know those nurses and doctors, so I think it would have helped to not have a stranger doing it."
The Biden administration has pointed parents to retail pharmacies and 122 children's hospitals with vaccine clinics. Nationwide, more than 35,000 sites, including pediatricians, federally qualified health centers and children's hospitals have been set up to vaccinate young kids, according to the administration. Yet administering the COVID vaccine to children presents obstacles that haven't been as prominent for other inoculations.
Enrolling pediatricians in the COVID-19 vaccine program is a challenge because of the application process, reporting requirements for administered doses, and staffing, said Claire Hannan, executive director of the Association of Immunization Managers.
"Many of them are short-staffed right now and don't necessarily have huge capacity to serve," she said. Plus, "it's not as easy to engage the schools in school-based clinics in certain areas just due to the political environment." Health centers, government officials and other groups have set up more than 9,000 school vaccination sites for 5- to 11-year-olds nationwide.
The CDC's long-standing program, Vaccines for Children, provides free shots for influenza, measles, chickenpox and polio, among others. Roughly 44,000 doctors are enrolled in the program, which is designed to immunize children who are eligible for Medicaid, are uninsured or underinsured, or are from Native or Indigenous communities. More than half of the program's providers offer COVID shots, although the rates vary by state.
Pharmacies have been heavily used in Illinois, where 25% of 5- to 11-year-olds are fully vaccinated.
Dr. Ngozi Ezike, a pediatrician and the director of the Illinois Department of Public Health, said 53% of shots administered to younger children as of Jan. 5 were done at pharmacies. Twenty percent occurred at private clinics, 7% at local health departments, 6% at federally qualified health centers and 5% at hospitals.
"You need all pieces of the pie" to get more kids vaccinated, Ezike said.
Kids Respond to 'the Greater Good'
The Levite Jewish Community Center in Birmingham, Alabama, tried to boost vaccinations with a party, offering games and treats, even a photo booth and a DJ, along with shots given by a well-known local pharmacy. Brooke Bowles, the center's director of marketing and fund development, estimated that about half a dozen of the 42 people who got a dose that mid-December day were kids.
Bowles was struck that children were more likely to roll up their sleeves when their parents emphasized the greater good in getting vaccinated. "Those children were just fantastic," she said. In parts of the Deep South like this one, pro-vaccine groups face a tough climb — as of Jan. 12, only 7% of Jefferson County's children had gotten both shots.
The greater good is what pediatricians have emphasized to parents who are on the fence.
"Children are vectors for infectious disease," said Dr. Eileen Costello, chief of ambulatory pediatrics at Boston Medical Center. "They're extremely generous with their microbes," spreading infections to vulnerable relatives and community members who may be more likely to end up in the hospital.
Seventy-eight percent of the hospital's adult patients have received at least one dose. For children 5 and up, the figure is 39%, with younger children having lower rates than adolescents, Costello said. Particularly amid an onslaught of misinformation, "it has been exhausting to have these long conversations with families who are so hesitant and reluctant," she said.
Still, she can point to successes: A mother who lost a grandparent to COVID was nonetheless reluctant to vaccinate her son with obesity and asthma whom Costello was seeing for a physical. The mother ultimately vaccinated all four of her children after Costello told her that her son's weight put him at higher risk for severe illness.
"That felt like a triumph to me," Costello said. "I think her thinking was, 'Well, he's a kid — he's going to be fine.' And I said, 'Well, he might be fine, but he might not.'"
Methodology
Vaccination numbers are from the Centers for Disease Control and Prevention as of Jan. 12.
National vaccination rates are calculated by the CDC and include vaccinations provided by federal programs such as the Indian Health Service and the Department of Defense, as well as U.S. territories. To compare the vaccination rollout for kids and adolescents, we counted day 0 as the day the CDC approved the vaccine for each age group: May 12, 2021, for 12- to 15-year-olds and Nov. 2, 2021, for 5- to 11-year-olds.
The CDC provides vaccination numbers at the state and county level. These numbers do not include the small fraction of children who were vaccinated by federal programs. To calculate rates for 5- to 11-year-olds, we divided by the total number of kids ages 5 to 11 in each state or county.
To calculate the number of children ages 5 to 11 in each state, we used the U.S. Census Bureau's 2019 Population Estimates Program "single year of age" dataset, the latest release available. For county-level data, we used the National Center for Health Statistics' Bridged Race Population Estimates, which contain single-year-of-age county-level estimates. We selected the 2019 estimates from the 2020 vintage release so the data would reflect the same year as the state-level estimates.
Vaccination data by age is unavailable for Idaho, counties in Hawaii and several California counties. For county-level vaccination data, we excluded states in which the county was unknown for at least 10% of the kids vaccinated in that state.
Visit the Github repository to read more about and download the data.
The justices removed a temporary halt imposed by a lower court late last year that affected healthcare facilities in half the states.
This article was published on Friday, January 14, 2022 in Kaiser Health News.
By Julie Rovner
The Supreme Court on Thursday blocked a key Biden administration COVID-19 initiative — putting a stop, for now, to a rule requiring businesses with more than 100 workers to either mandate that employees be vaccinated against COVID or wear masks and undergo weekly testing. The rule, which covers an estimated 80 million workers, took effect earlier this week.
At the same time, however, the justices said that a separate rule requiring COVID vaccines for an estimated 10 million health workers at facilities that receive funding from Medicare and Medicaid could go forward. The justices removed a temporary halt imposed by a lower court late last year that affected healthcare facilities in half the states.
In emergency oral arguments held Jan. 7, a majority of the justices seemed dubious that the federal government, through the Occupational Safety and Health Administration, had broad enough authority to require vaccines or tests for the bulk of the nation's private workforce, particularly for a threat that is not job-specific.
Said the unsigned majority opinion: "A vaccine mandate is strikingly unlike the workplace regulations that OSHA has typically imposed. A vaccination, after all, 'cannot be undone at the end of the workday.'"
Three of the court's conservatives — Justices Neil Gorsuch, Clarence Thomas and Samuel Alito — concurred with the decision in a signed opinion that laid out their concerns about OSHA's authority. "The agency claims the power to force 84 million Americans to receive a vaccine or undergo regular testing," they wrote. "By any measure, that is a claim of power to resolve a question of vast national significance. Yet Congress has nowhere clearly assigned so much power to OSHA."
Liberals on the court — where anti-COVID policies are even stricter than those up for debate in the case — were outraged at the majority decision, arguing that just because a threat exists outside the workplace as well as inside, that should not prevent the federal safety agency from regulating it.
Justices Stephen Breyer, Elena Kagan and Sonia Sotomayor wrote in a signed opinion, "When we are wise, we know not to displace the judgments of experts, acting within the sphere Congress marked out and under Presidential control, to deal with emergency conditions. Today, we are not wise."
In the second pair of cases also argued Jan. 7, the justices weighed whether the federal government could place conditions on payments for Medicare and Medicaid to help ensure the safety of the patients whose care is being underwritten.
The health worker rule, said the opinion, also unsigned, "fits neatly within the language of the statute. After all, ensuring that providers take steps to avoid transmitting a dangerous virus to their patients is consistent with the fundamental principle of the medical profession: first, do no harm."
Four conservative justices — Thomas, Alito, Gorsuch and Amy Coney Barrett — dissented in the health worker case, arguing in a signed opinion that "to the extent the rule has any connection to the management of Medicare, and Medicaid, it is at most a 'tangential' one."
President Joe Biden lamented the court's decision on the rule for large workplaces. "As a result of the Court's decision, it is now up to States and individual employers to determine whether to make their workplaces as safe as possible for employees, and whether their businesses will be safe for consumers during this pandemic by requiring employees to take the simple and effective step of getting vaccinated," he said in a statement.
The OSHA rules are opposed by many business groups, led by the small business advocacy organization the National Federation of Independent Business. It argued that allowing the rules to take effect would leave businesses "irreparably harmed," both by the costs of compliance and the possibility that workers would quit rather than accept the vaccine.
The challenge to the Medicare and Medicaid rules, by contrast, came mostly from states, rather than the hospitals, nursing homes and other facilities most directly affected. State officials charge that the rules would jeopardize the ability of healthcare providers, particularly those in rural areas, to retain enough staffers to care for patients.
The cases on the OSHA rule are National Federation of Independent Business v. Department of Labor and Ohio v. Department of Labor. The cases involving the CMS rule are Biden v. Missouri and Becerra v. Louisiana.
Unlike previous COVID surges, large portions of the patients with COVID are coming to the hospital for other reasons.
This article was published on Thursday, January 13, 2022 in Kaiser Health News.
By Lauren Weber and Phil Galewitz and Andy Miller
The Cleveland Clinic in Weston, Florida, on Jan. 11 was treating 80 COVID-19 patients — a tenfold increase since late December. Nearly half were admitted for other medical reasons.
The surge driven by the extremely infectious omicron variant helped push the South Florida hospital with 206 licensed beds to 250 patients. The rise in cases came as the hospital struggled with severe staff shortages while nurses and other caregivers were out with COVID.
The challenge is finding room to safely treat all the COVID patients while keeping staffers and the rest of patients safe, said Dr. Scott Ross, chief medical officer.
"It's not a PPE issue," he said, referring to personal protective equipment like masks, "nor an oxygen issue, nor a ventilator issue. It's a volume issue and making sure we have enough beds and caregivers for patients."
Nationally, COVID cases and hospitalizations are at their highest levels since the pandemic began. Yet, unlike previous COVID surges, large portions of the patients with COVID are coming to the hospital for other reasons. The infections are exacerbating some medical conditions and making it harder to reduce COVID's spread within hospital walls, especially as patients show up at earlier, more infectious stages of the disease.
Although the omicron variant generally produces milder cases, adding the sheer number of these "incidental" hospitalizations to COVID-caused hospitalizations could be a tipping point for a health care system that is reeling as the battle against the pandemic continues. Rising rates of COVID in the community also translate to rising rates among hospital staffers, causing them to call out sick in record numbers and further stress an overwhelmed system.
Officials and staff at 13 hospital systems around the country said that caring for infected patients who need other medical services is challenging and sometimes requires different protocols.
Dr. Robert Jansen, chief medical officer at Grady Health System in Atlanta, said the infection rate in his community was unprecedented. Grady Memorial Hospital went from 18 COVID patients on Dec. 1 to 259 last week.
Roughly 80% to 90% of those patients either have COVID as their primary diagnosis or have a health condition — such as sickle cell disease or heart failure — that has been exacerbated by COVID, Jansen said.
Although fewer of their patients have developed pneumonia caused by COVID than during the major spikes early last year, Grady's leaders are grappling with high numbers of health care workers out with COVID. At one point last week, Jansen said, 100 nurses and as many as 50 other staff members were out.
In one of New Jersey's largest hospital systems, Atlantic Health System, where about half the COVID patients came in for other reasons, not all of those with incidental COVID can be shifted into the COVID wards, CEO Brian Gragnolati said. They need specialized services for their other conditions, so hospital staffers take special precautions, such as wearing higher-level PPE when treating COVID patients in places like a cardiac wing.
At Miami's Jackson Memorial Hospital, where about half the COVID patients are there primarily for other health reasons, all patients admitted for COVID — whether they have symptoms or not — are treated in a part of the hospital reserved for COVID patients, said Dr. Hany Atallah, chief medical officer.
Regardless of whether patients are admitted for or with COVID, the patients still tax the hospital's ability to operate, said Dr. Alex Garza, incident commander of the St. Louis Metropolitan Pandemic Task Force, a collaboration of the area's largest health care systems. He estimated that 80% to 90% of patients in the region's hospitals are there because of COVID.
In Weston, Florida, the Cleveland Clinic is also having a hard time discharging COVID patients to nursing homes or rehabilitation facilities because many places aren't able to handle more COVID patients, Ross said. The hospital is also having difficulty sending patients home, out of concern they would put those they live with at risk.
All this means there's a reason that hospitals are telling people to stay away from the ER unless it's truly an emergency, said Dr. Jeremy Faust, an emergency medicine physician at Brigham and Women's Hospital in Boston.
The sheer number of patients who are showing up and don't know they have COVID during this surge is frightening, Faust said. As more incidental cases pour into hospitals, they pose a greater risk to staffers and other hospital patients because they are typically at a more contagious stage of the disease — before symptoms begin, Faust said. In previous COVID waves, people were being hospitalized in the middle and later phases of the illness.
In Faust's analysis of federal data, Jan. 7 showed the second-highest number of "hospital onset" COVID cases since the pandemic began, behind only an October 2020 outlier, he said. But this data accounts for only people who were in the hospital for 14 days before testing positive for COVID, Faust said, so it's likely an undercount.
A KHN investigative series revealed multiple gaps in government oversight in holding hospitals accountable for high rates of COVID patients who didn't have the diagnosis when they were admitted, including that federal reporting systems don't publicly note COVID caught in individual hospitals.
"People in the hospital are vulnerable for many reasons," said Dr. Manoj Jain, an infectious disease specialist in Memphis, Tennessee. "All of their existing underlying illnesses with multiple medical conditions — all of that puts them at much greater risk."
The ER in particular is a potential danger zone amid the current crush of cases, Garza said. He recommended that patients wear high-quality masks, like a KN95, or an N95 respirator. According to The Washington Post, the Centers for Disease Control and Prevention is weighing whether to recommend that all Americans upgrade their masks during the omicron surge.
"It's physics and math," Garza said. "If you've got a lot of people concentrated in one area and a high viral load, the probability of you being exposed to something like that if you're not wearing adequate protection are much higher."
If patients can't tolerate an N95 for an entire day, Faust urges them to wear upgraded masks whenever they come into contact with hospital staffers, visitors or other patients.
Dr. Dallas Holladay, an emergency medicine physician for Oregon's Samaritan Health Services system, said that because of nursing shortages, more patients are being grouped together in hospital rooms. This raises their infection risk.
Dr. Abraar Karan, an infectious diseases fellow at Stanford, believes all health care workers should be mandated to wear N95s for every patient interaction, not just surgical masks, considering the rise in COVID-exposure risk.
But in the absence of higher-quality mask mandates for staffers, he recommended that patients ask that their providers wear an N95.
"Why should we be putting the onus on patients to protect themselves from health care workers when health care workers are not even going to be doing that?" he asked. "It's so backwards."
Some hospital workers may not know they are getting sick — and infectious. And even if they do know, in some states, including Rhode Island and California, health care workers who are asymptomatic can be called back to work because of staffing shortages.
Faust would like to see an upgrade of testing capacity for health care workers and other staff members.
At Stanford, regular testing is encouraged, Karan said, and tests are readily available for staffers. But that's an exception to the rule: Jain said some hospitals have resisted routine staff testing — both for the lab resource drain and the possible results.
"Hospitals don't want to know," he said. "We just don't have the staff."
Tranisha Rockmore and her daughter Karisma waited at an Atlanta children's hospital in July for their ride home.
Karisma had been at Children's Healthcare of Atlanta to have her gastrostomy tube fixed, Rockmore said. The 4-year-old, who has several severe medical conditions, has insurance coverage from Medicaid, which provides transportation to and from nonemergency medical appointments through private vendors.
After being told that a ride would not be available for hours, Rockmore said, she finally gave up and called her sister to drive them home to the South Georgia town of Ashburn, more than 160 miles away.
She said it wasn't the first time she had run into trouble with the Medicaid transportation service.
"Sometimes they don't ever come," said Rockmore, who doesn't own a car. Many rides have been canceled recently, she said; the company told her it couldn't find drivers. "Sometimes they make me feel like they don't care if my child gets to the doctor or not."
Rockmore's remarks would no doubt resonate with the Medicaid beneficiaries, relatives and advocacy groups across the country upset about problems patients have getting transportation for medical appointments. Not only are some shuttle drivers no-shows, but some patients have been injured during rides because their wheelchairs were not properly secured, according to lawsuits filed in Georgia and other states.
States are required to set up transportation to medical appointments for adults, children and people with disabilities in the Medicaid health insurance program. Transportation brokers — such as Modivcare, which Rockmore used — have subcontracts with local providers, often small "mom and pop" operations, to shuttle patients to and from needed appointments, including for dialysis, adult day care, and mental health and treatment for substance use disorders.
It's a lucrative business, with transportation management contracts that can be worth tens of millions of dollars for companies. The two companies that have contracts in Georgia have given extensively to political campaigns of elected officials in the state. The firms, Modivcare and Southeastrans, have also faced complaints, lawsuits and state government fines in Georgia and elsewhere. The two companies maintain, though, that the complaints relate to a tiny percentage of rides provided.
Medicaid nonemergency transportation "is absolutely a national challenge,'' said Matt Salo, executive director of the National Association of Medicaid Directors. "This is something practically all the states we talk to are dealing with. I don't think anyone has figured this out."
Beth Holloway, 47, of Wharton, New Jersey, said she has had multiple problems with rides. "Sometimes they arrive late, other times not at all," said Holloway, who has cerebral palsy and lives independently. "I've been stranded at doctors' offices for hours, sometimes out in the elements."
In Los Angeles, Rose Ratcliff and several other patients filed a lawsuit in 2017 against Modivcare, then known as LogistiCare; other local transportation brokers; and the insurers that run the state Medicaid program, known as Medi-Cal in California.
The pending suit alleges that Ratcliff and other patients like her missed crucial dialysis appointments and faced unsafe conditions during transport. It calls Modivcare the "broken link" in the Medicaid transportation chain and claims the company did not adequately respond to complaints from clients like Ratcliff.
Katherine Zerone, a spokesperson for Modivcare, said the company does not comment on pending litigation. In an initial legal response, it said the problems were linked to the independent transportation vendors and their employees, not Modivcare/LogistiCare.
After complaints were made about Southeastrans' service across Indiana, the state appointed a special legislative commission to review the company's performance. Indiana now publishes detailed complaint data for the Atlanta-based company each month.
In August, James Mills, a Bloomington man who uses a wheelchair, filed a lawsuit alleging that the company had violated the Americans with Disabilities Act and other civil rights laws by not providing a wheelchair-accessible vehicle to transport him to and from his appointments. The lawsuit alleges that because of the lack of wheelchair accommodation, Mills missed needed medical care and was even kicked off the patient lists of some of his local doctors.
"While we're unable to comment on pending litigation, we're aware of the matter and strongly disagree with the allegations,'' said Christopher Lee, an attorney for Southeastrans, which operates in seven states and Washington, D.C.
Two decades ago, Georgia was one of the first states to start using transportation brokers to manage its Medicaid transportation program. The two longtime providers in the state — Modivcare and Southeastrans — will receive a total of $127.6 million from the state this fiscal year. They are paid a per-member monthly rate that averages $5.60 in Georgia, regardless of how many rides, if any, a Medicaid user takes. The state was expected to announce new contracts for Medicaid transportation this month.
Georgia assessed a total of $4.4 million in penalties to the two companies over the period from January 2018 to December 2020 for failing to pick up patients on time and other problems. However, the state Medicaid agency essentially gave them discounts, charging the two companies only $1.2 million during that period, according to state Department of Community Health letters obtained through an open records request. In extending the brokers' contracts in the 2018 fiscal year, the state Medicaid agency agreed to cap damages at 25% of the assessed amount, Department of Community Health spokesperson Fiona Roberts said.
Modivcare said it's the largest transportation broker nationally, controlling about 40% of the market. The publicly traded company based in Colorado provides Medicaid transportation in more than 20 states.
Modivcare and other companies say only a tiny fraction of the rides they provide lead to complaints. "Our first priority is safe and reliable transportation," Zerone said. In Georgia, 99.8% of its trips are complaint-free, she said.
Andrew Tomys, Georgia state director for Southeastrans, said 99.9% of the trips his company services in the state are "free of valid complaints."
Both Modivcare and Southeastrans say they investigate each complaint to determine whether it's valid. In Georgia, Modivcare reported to the Department of Community Health more than 3,200 late rides or no-shows over a year out of around 2.3 million rides. Southeastrans reported just over 900 such problems out of around 1.4 million rides.
But patients and their advocates say that in many cases problems aren't reported, or complaints are ignored.
KHN tells the stories of Georgia in partnership with Georgia Health News.
Georgia should peg any new contracts to timely rides, ease of use for beneficiaries and the overall ride experience, said Melissa Haberlen DeWolf, policy director of the advocacy group Voices for Georgia's Children.
In recent election cycles, Southeastrans and Modivcare — through its former corporate name LogistiCare — have been generous donors to Georgia Republicans, who have controlled state offices in the state for nearly two decades.
Southeastrans, as a company, has donated $126,000 to Georgia Republican campaigns and committees since 2017, according to documents on the Georgia Government Transparency and Campaign Finance Commission website.
Additionally, Southeastrans' co-founder and CEO, Steve Adams, has given at least $86,000 to Georgia Republican candidates for state office and to the state Republican Party since 2017, according to state filings. During that same period, Adams donated $3,800 to two state Democratic candidates.
"As a minority-owned business headquartered in Georgia for over 20 years, Southeastrans and its owner have contributed to a diverse mix of local causes and organizations," Lee said.
Modivcare, through LogistiCare, has given $48,350 to Georgia Republican candidates in state races since 2017, according to the Georgia Government Transparency and Campaign Finance Commission. It gave $750 to former Democratic state Rep. Pat Gardner, also according to the commission. Modivcare's Zerone did not answer questions about the company's political giving because she said it would be "competitive information."
Such contributions can help companies buy access to government officials, said Paul S. Ryan, a vice president at the government watchdog group Common Cause.
"Anytime a special interest doing business with the government can make big contributions to public officials handing out contracts or making other government decisions, it's a cause for concern," he said. "Average, everyday Americans can't buy the same influence."
Tranisha Rockmore said she's so fed up that she wants to get a car so she can avoid the transportation problems. "I'm to the point where I feel like they don't care about my daughter," she said. "You don't just do people's kids like that."
Willie Murphy died the day after Thanksgiving 2021. His wife, Mary, cared for him in their Nashville, Tennessee, home with the help of a new hospice agency focused on serving Black patients.
This time, it didn't take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer's disease in 2020, she had been reluctant until she saw what a help it was. So when her husband, Willie, neared the end of his life, she embraced hospice again.
The Murphys' house in a leafy Nashville neighborhood is their happy place — full of their treasures.
"He's good to me — buys me anything I want," she said, as she pulled a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.
Willie bought Mary the display case to help her to show off the trinkets she picks up at estate sales.
Down the hall, Willie was lying in their bed, now unable to speak. His heart was giving out.
"You gonna wake up for a minute?" she asked, cradling his head. She patted his back while he cleared his throat. "Cough it out."
Mary had been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville focused on increasing the use of end-of-life comfort care by Black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they aim to serve.
In their application to obtain a certificate of need in Tennessee, the hospice owners made it clear they are Black and intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data shows that in Nashville just 19% of hospice patients are Black although they make up 27% of the capital city's population.
Though the area already had numerous hospice agencies, regulators granted Heart and Soul permission to operate, based primarily on the value of educating an underserved group.
In Murphy's first hospice experience, her mother had been living with dementia for decades. Still, Murphy had concerns about transitioning her mother to hospice. She felt as if she was giving up on her mom.
"My first thought was death," she said.
National data shows that Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with 54% of white patients, according to data compiled annually by the National Hospice and Palliative Care Organization.
Murphy's mother survived nearly three years on hospice. The benefit is meant for those in the final six months of life, but predicting when the end will come is difficult, especially in cases of dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.
Murphy did most of the caregiving — which can be overwhelming — but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.
And most important to Murphy was the emotional support, which came mostly from her hospice nurse.
"Wasn't no doctor going to come here, hold my hand, stay here until the funeral home came for her," she said about the day her mother died.
Last year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She'd already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn't breathing.
"If you don't feel like, 'Oh my God, thank God I have hospice,' if you can't say that, then we're doing something wrong," said Keisha Mason, Heart and Soul's director of nursing.
Mason, like Murphy, is Black and said that in her view there's nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it's basically free to patients — paid for by Medicare, Medicaid and most private health plans.
"I say to them, 'If you see a bill, then call us, because you should not,'" she said.
As Mason helped launch this new hospice agency, she began using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.
"Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit," she said.
The investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit; Nashville pastor the Rev. Sandy McClain; and André Lee, a former hospital administrator on the campus of Meharry Medical College, a historically Black institution in Nashville.
Lee and Turner also started a Black-focused hospice agency in Michigan and have plans to replicate the model in other states.
More families need to consider home hospice as an alternative for end-of-life care, Lee said. Nursing homes are pricey. And even with Medicare, a hospital bill can be hefty.
"You'll go in there and they'll eat you alive," he said. "I hate to say [something] bad about hospitals, but it's true."
Hospice research hasn't come up with clear reasons to explain the gap between white and Black families' use of the benefit. Some experts speculate it's related to spiritual beliefs and widespread mistrust in the medical system due to decades of discrimination.
The hospice industry's national trade group, the NHCPO, released a diversity and inclusion toolkit and a guide to reaching more Black patients. It recommends connecting with influential DJs, partnering with Black pastors and simply hiring more Black nurses.
Bridging the gap is not overly complicated, Lee said.
"A lot of hospices don't employ enough Black people," he said. "We all feel comfortable when you see someone over there that looks like you."
Well-established hospice agencies have attempted to minimize barriers with their own diversity initiatives. Michelle Drayton of Visiting Nurse Service of New York said her large agency has met with ministers who counsel families dealing with failing health.
"Many of them did not fully understand what hospice was," she said. "They had many of the same sort of misperceptions."
Every hospice company, whether it's an upstart or one of the nation's oldest, can promote end-of-life education and ease care disparities, Drayton said. "We're not just handing out a brochure," she added.