Noam N. Levey

The Biden administration announced a major initiative to protect Americans from medical debt on Thursday, outlining plans to develop federal rules barring unpaid medical bills from affecting patients’ credit scores.

The regulations, if enacted, would potentially help tens of millions of people who have medical debt on their credit reports, eliminating information that can depress consumers’ scores and make it harder for many to get a job, rent an apartment, or secure a car loan.

New rules would also represent one of the most significant federal actions to tackle medical debt, a problem that burdens about 100 million people and forces legions to take on extra work, give up their homes, and ration food and other essentials, a KFF Health News-NPR investigation found.

“No one in this country should have to go into debt to get the quality health care they need,” said Vice President Kamala Harris, who announced the new moves along with Rohit Chopra, head of the Consumer Financial Protection Bureau, or CFPB. The agency will be charged with developing the new rules.

“These measures will improve the credit scores of millions of Americans so that they will better be able to invest in their future,” Harris said.

Enacting new regulations can be a lengthy process. Administration officials said Thursday that the new rules would be developed next year.

Such an aggressive step to restrict credit reporting and debt collection by hospitals and other medical providers will also almost certainly stir industry opposition.

At the same time, the Consumer Financial Protection Bureau, which was formed in response to the 2008 financial crisis, is under fire from Republicans, and its future may be jeopardized by a case before the Supreme Court, whose conservative majority has been chipping away at federal regulatory powers.

But the move by the Biden administration drew strong praise from patients’ and consumer groups, many of whom have been pushing for years for the federal government to strengthen protections against medical debt.

“This is an important milestone in our collective efforts and will provide immediate relief to people that have unfairly had their credit impacted simply because they got sick,” said Emily Stewart, executive director of Community Catalyst, a Boston nonprofit that has helped lead national medical debt efforts. 

Credit reporting, a threat designed to induce patients to pay their bills, is the most common collection tactic used by hospitals, a KFF Health News analysis has shown.

“Negative credit reporting is one of the biggest pain points for patients with medical debt,” said Chi Chi Wu, a senior attorney at the National Consumer Law Center. “When we hear from consumers about medical debt, they often talk about the devastating consequences that bad credit from medical debts has had on their financial lives.”

Although a single black mark on a credit score may not have a huge effect for some people, the impact can be devastating for those with large unpaid medical bills. There is growing evidence, for example, that credit scores depressed by medical debt can threaten people’s access to housing and fuel homelessness in many communities.

At the same time, CFPB researchers have found that medical debt — unlike other kinds of debt — does not accurately predict a consumer’s creditworthiness, calling into question how useful it is on a credit report.

The three largest credit agencies — Equifax, Experian, and TransUnion — said they would stop including some medical debt on credit reports as of last year. The excluded debts included paid-off bills and those less than $500.

But the agencies’ voluntary actions left out millions of patients with bigger medical bills on their credit reports. And many consumer and patient advocates called for more action. 

The National Consumer Law Center, Community Catalyst, and some 50 other groups in March sent letters to the CFPB and IRS urging stronger federal action to rein in hospital debt collection.

State leaders also have taken steps to expand consumer protections. In June, Colorado enacted a trailblazing bill that prohibits medical debt from being included on residents’ credit reports or factored into their credit scores.

Many groups have urged the federal government to bar tax-exempt hospitals from selling patient debt or denying medical care to people with past-due bills, practices that remain widespread across the U.S., KFF Health News found.

Hospital leaders and representatives of the debt collection industry have warned that such restrictions on the ability of medical providers to get their bills paid may have unintended consequences, such as prompting more hospitals and physicians to require upfront payment before delivering care.

Looser credit requirements could also make it easier for consumers who can’t handle more debt to get loans they might not be able to pay off, others have warned.

“It is unfortunate that the CFPB and the White House are not considering the host of consequences that will result if medical providers are singled out in their billing, compared to other professions or industries,” said Scott Purcell, chief executive of ACA International, the collection industry’s leading trade association.

About This Project

“Diagnosis: Debt” is a reporting partnership between KFF Health News and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on original polling by KFF, court records, federal data on hospital finances, contracts obtained through public records requests, data on international health systems, and a yearlong investigation into the financial assistance and collection policies of more than 500 hospitals across the country. 

Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status for KFF Health News to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses. And the CED Project, a Denver nonprofit, worked with KFF Health News on a survey of its clients to explore links between medical debt and housing instability. 

KFF Health News journalists worked with KFF public opinion researchers to design and analyze the “KFF Health Care Debt Survey.” The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Reporters from KFF Health News and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

The first time Heidi Sweeney began hallucinating, the voices in her head told her Orange County’s Huntington Beach was where she would be safe. There, behind the bikini-clad crowds playing volleyball and riding beach cruisers, she slept in homeless encampments, then beside a bush outside a liquor store, drinking vodka to drown out the din only she could hear.

For years, she refused help, insisting to all who offered, “I’m not sick,” until police arrested her for petty theft and public drunkenness. A judge gave her an ultimatum: jail or treatment. She chose treatment.

“I’m so thankful that they did that,” said Sweeney, now 52. “I needed that. I think there’s others out there that need it, too.”

If she hadn’t been compelled to get care, Sweeney said, she wouldn’t be alive today, back at work and reunited with her husband. It’s why she supports California’s new civil CARE Courts that will launch this fall in eight counties, including San Francisco, Los Angeles, and Orange, followed by the rest of the state in 2024.

Under the new system, family members and first responders can ask county judges to order people with psychotic illness into treatment, even if they are not unhoused or haven’t committed a crime. A judge will then determine if a person meets criteria for the program and may oversee a care agreement or compel a treatment plan. That treatment plan could even include involuntary commitment.

The bill creating the program sailed through the state legislature with near-unanimous support last year amid growing frustration from voters over the state’s increasing number of homeless people, even as it drew vehement opposition from disability rights groups, who argued CARE Courts’ hallmark — compelling people who have done nothing wrong into mental health care — is a violation of civil rights.

That tension — between those who advocate for treatment being voluntary and those who say the status quo allows people to die in the streets “with their rights on” — is playing out all over the state of California. In Orange County, officials are threading a delicate needle: how to convince people to accept care without coercion, particularly when their illness causes them to believe they are not ill.

“We don’t want to punish people,” said Maria Hernandez, the presiding judge for Orange County Superior Court. “We want them to maintain their dignity.”

Orange County is expecting between 900 and 1,500 residents will be eligible for CARE Court in any given year, according to the county public defender’s office. Local lawyers, judges, and health officials have all aligned in designing their program with a distinct patient focus, endeavoring to make the process as benign and nonthreatening as possible.

Hernandez said that means modeling the new civil court after the county’s other collaborative courts, where judges often lose the black robe and come down off the bench to work with people, eye to eye.

One prototype, she said, is her Young Adult Court, where, on a day in June, the mood was downright jovial. Defendants and their family members were chatting and laughing, munching on snacks laid out on a table in the back as three young men “graduated” from the diversion program.

“Judge Hernandez is so awesome,” said Abraham, 25, a graduate of the program, who asked to be identified only by his first name because he was charged with a felony that has since been expunged from his record. “I don’t even look at her as the judge. She’s just like a mom figure. She’s only trying to push you to be the better you.”

A minute later, Hernandez walked through the aisle of the courtroom and gave Abraham a hug.

Even if CARE Court is overseen by a judge like Hernandez, patient advocates object to the idea. Orlando Vera, who lives with bipolar disorder, said helping a vulnerable person heal from mental illness shouldn’t involve dragging them into a courtroom.

“It’s not a place you resolve your emotions. It is a very business-oriented environment. So I do feel that this is not the place for it,” Vera said, adding, “Can we stop it? I would say we can’t.”

After advocates failed to persuade the state Supreme Court to block the program on constitutional grounds, some started referring to gearing up for the rollout of CARE Court as “disaster preparedness,” equating it with a devastating earthquake or wildfire.

Peer Voices of Orange County, a group Vera co-founded and runs, plans to install patient advocates at the courthouse to attend all CARE Court hearings.

“Our focus is how do we support those that are going through the system,” he said. “We need to be their voice.”

Orange County behavioral health director Veronica Kelley is sympathetic to advocates’ concerns. She said CARE Court is not the program she would have created to improve the state’s mental health system. But she serves at the will of the governor and other elected officials who control her budget.

“So we end up building the Winchester Mystery House,” she said, referring to the 100-year-old mansion in San Jose known for its mazelike layout. “It is a structure that was OK, but then it just started adding hallways to nowhere and basements that are on top of the building. That’s what our system looks like.”

Kelley is trying to shape the new court process into something its critics can accept. This is why she wanted Orange County to go first: “so we can help craft it into something that’s not another colossal waste of time and funds, and that we don’t destroy the people we’re trying to serve at the same time,” she told a roomful of patient advocates during a meeting of the state Patients Rights Committee, held in Santa Ana.

This means social workers from her behavioral health department or the public defender’s office might visit people 20, 30, or 40 times to build trust, listen, and set goals.

Under the CARE legislation, county courts are allowed to fine public behavioral health agencies $1,000 a day if they can’t find a patient and enroll them in treatment by certain deadlines.

Kelley said her county’s judges have agreed to give her staff the time and extensions they need to do their jobs well. She also vowed that no one who declined services in her county would be institutionalized involuntarily, even though the new legislation allows it.

“If someone agrees to do something of their own accord, it is far more probable that there will be long-term success and long-term commitment to the services being provided,” she said.

Kelley pointed to the county’s success with another civil court process, established by Laura’s Law in 2002, in which, for every person involved in court-ordered outpatient care, another 20 accepted treatment willingly.

She said the county has the same goal for CARE Court, with the focus on finding a treatment plan people accept voluntarily, before a judge has to order it.

This article is from a partnership that includes KQED, NPR, and KFF Health News.

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If you or someone you know is in crisis, please call the National Suicide Prevention Lifeline at 988 or contact the Crisis Text Line by texting HOME to 741741.

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Jason Lance thought Jan. 21, 2010, was a day like any other until the call came.

He had dropped off his 9-year-old son, Montana, at Stewart’s Creek Elementary School in The Colony, Texas, that morning.

“There were no problems at home. He was smart. He wore his heart on his sleeve and he talked and talked and talked,” said Lance. It was “the same old, same old normal day. There were kisses and goodbyes and he said, ‘I love you, Daddy.’”

A few hours later, school officials called to say Montana had died by suicide while locked in the nurse’s bathroom.

“I knew he had some issues going on in school, but I never seen it coming,” said Lance. His shock and grief were complicated by the realization that there may have been more signs his son was struggling.

As children across the country step back into school routines this fall, it is important to pay attention to their mental health as well as their academics. Suicide ranks as either the seventh- or eighth-leading cause of death among children ages 5 to 11, according to the Centers for Disease Control and Prevention and recent studies. And numbers show the rates among younger kids appear to have increased in the past decade, especially among Black males.

A growing body of research shows that “historically we thought that suicide is a problem of teens and adults, but younger children are expressing similar thoughts that may have been ignored before,” said Paul Lipkin, a pediatrician at the Kennedy Krieger Institute in Baltimore and a specialist in developmental disabilities such as autism.

This has many experts calling for lowering the screening age for suicide ideation in children and moving to develop more effective early suicide risk detection and targeted prevention strategies. The broad approach includes pediatricians, teachers, and parents working with children at a young age to build their resilience and identify and manage their stress.

Studies have found that young children gain an understanding about death and killing oneself from TV or other media, discussions with other children, or exposure to death from a family or community loss.

“Pediatric suicide wasn’t on our radar decades ago and maybe was underreported,” said Holly Wilcox, president of the International Academy of Suicide Research and a professor at the Johns Hopkins Bloomberg School of Public Health in Baltimore. “The truth is that now we can do stuff about it.”

It is quite likely the 136 reported suicides from 2001 to 2021 among 5- to 9-year-olds were an undercount.

“Counts are often incomplete, and causes of death may be pending investigation resulting in an underestimate relative to final counts,” said Margaret Warner, a senior epidemiologist at the CDC.

The problems with those numbers are important because, Warner said, “if we are missing deaths, or don’t have all the information leading to them, we can’t properly develop programs to prevent future deaths.”

That’s why there’s also an ongoing national effort by coroners and medical examiners to improve the quality and consistency of pediatric death investigations.

Leaders in suicide prevention hope this wide spotlight on pediatric suicide will also help curtail the rising suicide rate among people ages 10 to 24 in the U.S. since suicide is the second-leading cause of death in that age group, according to the CDC.

Some of the increase in mental health issues among children has been attributed to the isolation and lack of school structure during the pandemic. Beginning in April 2020, pediatric emergency room visits for children 5 to 11 increased approximately 24%, according to a CDC report from November 2020.

Other factors, such as being neurodivergent or having a psychiatric disorder, can make a child more vulnerable to suicide.

A study published in February in Frontiers in Public Health also found that being the victim or perpetrator of bullying is a risk factor for suicide, even when researchers controlled for other risk factors.

Montana Lance was diagnosed with attention-deficit/hyperactivity disorder, as well as dyslexia, and often was the target of bullying at school.

Officials at the Lewisville Independent School District declined to comment on Montana’s death. His parents filed a lawsuit against the school district, but it was dismissed, and the district was found not liable for his death.

Suicide is complex, but recent studies have found that there are things parents, teachers, pediatricians, and caregivers can do to help protect children from it.

Lisa Horowitz, a pediatric psychologist and staff scientist at the National Institute of Mental Health, said, “It’s never too early to start a conversation with kids about recognizing mental health distress and doing what we can do to help them have better coping strategies and foster resilience.”

Building resilience in children can help buffer them in times of stress, according to a study published in 2022 in Frontiers of Psychiatry.

“I don’t want people to panic but just want them to be vigilant about their children,” said Horowitz.

Sometimes that vigilance can be “tricky” because depression may look different in younger kids. They may act out, be more irritable, and not manifest their symptoms in the same way as teens and adults, Wilcox said.

“We don’t have enough studies on how best to identify preteens and children at risk for suicide. Oftentimes you just have to trust your gut about these things,” she said.

If a child is upset, parents should ask them questions about what they’re experiencing, said Tami D. Benton, psychiatrist-in-chief, executive director, and chair of the Department of Child and Adolescent Psychiatry and Behavioral Sciences at Children’s Hospital of Philadelphia.

“Parents shouldn’t talk kids out of their feelings or give them examples of when it happened to them, or minimize their feelings. It puts them down,” she said.

Parents and children should come up with a plan together, but also teach their children that they can master these situations, said Benton.

When parents get stuck about what to do in difficult situations, they should consult with their child’s pediatrician.

In March, the American Academy of Pediatrics recommended universal screening for suicide risk in all children 12 and older and when clinically indicated for kids 8 to 11. There aren’t any screening tools validated for use in children under 8. But Horowitz said younger children can still be assessed and evaluated for suicide risk.

Schools can also play an important role in suicide prevention.

Meghan Feby, a school counselor in the Colonial School District in New Castle, Delaware, said, “I am the sole school counselor in my building. It is a daunting task. That’s why there are supports in place that have eyes where I can’t have eyes … on school computers. Employing software strategies like GoGuardian Beacon can really help fill in gaps and supports.”

The software captures keywords and phrases that might indicate a child is thinking about suicide and has already been used to intervene when children using district computers displayed concerning behavior. It is monitoring activities on school computers used by more than 6.7 million public school students in kindergarten through 12th grade.

Some schools said they are having problems implementing software like this because some parents find it intrusive.

Many schools use the Good Behavior Game, a decades-old behavior management intervention for kids in first and second grades, and it has been used in higher grades. The team-oriented classroom curriculum uses peer pressure to stimulate students to be attentive and engaged and work together. Researchers such as Wilcox have studied the extensive participation of thousands of students and found it reduced suicidal thoughts and behaviors.

Children who have played the game were half as likely as young adults to report suicidal thoughts and about a third less likely to report a suicide attempt.

Lance said that the day Montana died by suicide changed his life forever.

“You’re not supposed to bury your children. They’re supposed to bury you,” he said. “All this attention on the mental health status of children these days is not going to bring my child back, but it can stop another family from suffering.”

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Rick Jaenisch went through treatment six times before his hepatitis C was cured in 2017. Each time his doctors recommended a different combination of drugs, his insurer denied the initial request before eventually approving it. This sometimes delayed his care for months, even after he developed end-stage liver disease and was awaiting a liver transplant.

“At that point, treatment should be very easy to access,” said Jaenisch, now 37 and the director of outreach and education at Open Biopharma Research and Training Institute, a nonprofit group in Carlsbad, California. “I’m the person that treatment should be ideal for.”

But it was never easy. Jaenisch was diagnosed in 1999 at age 12, after his dad took him to a San Diego hospital because Jaenisch showed him that his urine was brown, a sign there was blood in it. Doctors determined that he likely got the disease at birth from his mom, a former dental surgical assistant who learned she had the virus only after her son’s diagnosis.

People infected with the viral disease, which is typically passed through blood contact, are often outwardly fine for years. An estimated 40% of the more than 2 million people in the U.S. who are infected don’t even know they have it, while the virus may quietly be damaging their liver, causing scarring, liver failure, or liver cancer.

With several highly effective, lower-cost treatments now on the market, one might expect that nearly everyone who knows they have hepatitis C would get cured. But a study from the Centers for Disease Control and Prevention published in June found that is far from the case. A proposal by the Biden administration to eliminate the disease in five years aims to change that.

Overall, the agency’s analysis found, during the decade after the introduction of the new antiviral treatments, only about a third of the people with an initial hepatitis C diagnosis cleared the virus, either through treatment or the virus resolving on its own. Most infected people had health insurance of some kind, whether Medicare, Medicaid, or commercial coverage. But even among commercially insured patients, who were most likely to receive treatment, only half of those age 60 or older had viral clearance by the end of the study period in 2022.

“Unlike HIV, where you have it for the rest of your life, with hepatitis C it’s a very short time frame, just eight to 12 weeks, and you’re cured,” said Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. “So why aren’t we doing a better job?”

Experts point to several roadblocks that infected people encounter. When the new treatments were introduced, cost was a huge factor. Private plans and state Medicaid programs limited spending on the pricey drugs by making them tougher to get, imposing prior authorization requirements, restricting access to people whose livers were already damaged, or requiring patients to abstain from drug use to qualify, among other restrictions.

By the time Jaenisch’s case was cured at age 31, the landscape of hepatitis C treatment had changed dramatically. A groundbreaking, once-a-day pill was introduced in 2013, replacing a grueling regimen of weekly interferon injections that had uncertain success rates and punishing side effects. The first of these “direct-acting antivirals” treated the disease in eight to 12 weeks, with few side effects and cure rates exceeding 95%. As more drugs were approved, the initial eye-popping $84,000 price tag for a course of treatment has gradually dropped to about $20,000.

As drug prices have declined, and under pressure from advocates and public health experts, many states have eliminated some of those barriers that have made it difficult to get approved for treatment.

Still more barriers exist that have little to do with the price of the drug.

Ronni Marks, a former hepatitis C patient, advocates for patients who often fall through the cracks. These include rural residents and those who are uninsured, transgender people, or injection drug users. An estimated 13% of people who pass through U.S. jails and prisons each year have a chronic hepatitis C infection, but access to care there is scant.

Marks said that many disadvantaged people need help getting services. “In many cases they have no way to travel, or they’re not in a situation where they can get to testing,” she said.

Unlike the federal Ryan White HIV/AIDS Program, which for more than 30 years has provided grants to cities, states, and community-based groups to provide medication, treatment, and follow-up care for people with HIV, there’s no coordinated, comprehensive program for patients with hepatitis C.

“In a perfect world, that would have been a good model to replicate,” said Sonia Canzater, the senior project director of the infectious diseases initiative at Georgetown’s O’Neill Institute for National and Global Health Law. “That’s probably never going to happen. The closest thing we can hope for is this national plan, to systemically provide access so that people aren’t beholden to the policies in their states.”

The national plan Canzater is referring to is a $12.3 billion, five-year initiative to eliminate hepatitis C that was included in President Joe Biden’s fiscal year 2024 budget proposal. Former National Institutes of Health director Francis Collins is spearheading the initiative for the Biden administration.

The program would:

• Speed up the approval of point-of-care diagnostic tests, allowing patients to be screened and begin treatment in a single visit, rather than the current multistep process.
• Improve access to medications for vulnerable groups such as people who are uninsured, incarcerated, part of the Medicaid program, or members of American Indian and Alaska Native populations by using a subscription model. Known as the Netflix model, this approach enables the government to negotiate a set fee with drug companies that would cover treatment for all the individuals in those groups that need it.
• Build the public health infrastructure to educate, identify, and treat people who have hepatitis C, including supporting universal screening; expanded testing, provider training, and additional support for care coordination; and linking people to services.

“This is both about compassion and good financial sense,” Collins said, pointing to an analysis by Harvard researchers projecting that the program would avert 24,000 deaths and save $18.1 billion in health spending over 10 years.

Collins said legislation to implement the Biden plan, currently in draft form, was expected to be introduced now that Congress has reconvened after its summer recess. The Congressional Budget Office has not yet estimated its cost.

Until covid-19 burst on the scene in 2020, hepatitis C had the dubious distinction of killing more Americans annually — nearly 20,000 — than any other infectious disease. Advocates are pleased that the virus is finally getting the attention they believe it deserves. Still, they are not confident that Congress will support providing more than $5 billion in new funding for it. The rest would come in the form of savings from existing programs. But, they said, it’s a step in the right direction.

“I’m thrilled” that there is a federal proposal to end hepatitis C, said Lorren Sandt, executive director of the Caring Ambassadors, a nonprofit in Oregon City, Oregon, that helps people manage chronic diseases such as hepatitis C. “I’ve cried so many times in joy since that came out.”

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Abby Madore covers a lot of ground each day at work.

A staffer at a community health center in Carson City, Nevada, Madore spends her days helping low-income residents understand their health insurance options, including Medicaid. Her phone is always ringing, she said, as she fields calls from clients who dial in from the state’s remote reaches seeking help.

It’s a big job, especially this year as states work to sort through their Medicaid rolls after the end of a pandemic-era freeze that prohibited disenrollment.

A few dozen specialists work for seven navigator organizations tasked with helping Nevadans enroll in or keep their coverage. Madore said she mostly works with people who live in rural Nevada, a sprawling landmass of more than 90,000 square miles.

Katie Charleson, communications officer for Nevada’s state health marketplace, said it’s always a challenge to reach people in rural areas. Experts say this problem isn’t unique to the state and is causing concern that limited resources will throw rural Americans into jeopardy as the Medicaid unwinding continues.

Recent data submitted to the Centers for Medicare & Medicaid Services shows 72% of people who have lost Medicaid coverage since states began the unwinding process this year were disenrolled for procedural reasons, not because officials determined they are no longer eligible for the joint state-federal health insurance program.

By late August, federal officials directed state Medicaid overseers to pause some procedural disenrollments and reinstate some recipients whose coverage was dropped.

Experts say those procedural disenrollments could disproportionately affect rural people.

A brief recently published by researchers at the Georgetown University Center for Children and Families noted that rural Medicaid recipients face additional barriers to renewing coverage, including longer distances to eligibility offices and less access to the internet.

Nationwide, Medicaid and CHIP, the Children’s Health Insurance Program, covered 47% of children and 18% of adults, respectively, in small towns and rural areas, compared with 40% of children and 15% of adults in metropolitan counties.

“As is clear from our research, rural communities rely on Medicaid to form the backbone of their health care system for children and families,” said Joan Alker, who is one of the brief’s co-authors, the executive director of the Center for Children and Families, and a research professor at Georgetown’s McCourt School of Public Policy. “So if states bungle unwinding, this is going to impact rural communities, which are already struggling to keep enough providers around and keep their hospitals.”

A lack of access to navigators in rural locales to help Medicaid enrollees keep their coverage or find other insurance if they’re no longer eligible could exacerbate the difficulties rural residents face. Navigators help consumers determine whether they’re eligible for Medicaid or CHIP, coverage for children whose families earn too much to qualify for Medicaid, and help them enroll. If their clients are not eligible for these programs, navigators help them enroll in marketplace plans.

Navigators operate separately from Nevada’s more than 200 call center staffers who help residents manage social service benefits.

Navigators are required by the federal government to provide their services at no cost to consumers and give unbiased guidance, setting them apart from insurance broker agents, who earn commissions on certain health plans. Without them, there would be no free service guiding consumers through shopping for health insurance and understanding whether their health plans cover key services, like preventive care.

Roughly 30 to 40 certified enrollment counselors like Madore work at navigator organizations helping consumers enroll in plans through Nevada Health Link, the state health marketplace, which sells Affordable Care Act plans, said Charleson. One of these groups is based in the small capital city of Carson City, 30 miles south of Reno, where fewer than 60,000 people live. The rest are in the urban centers of Reno and Las Vegas.

Availability of navigators and their outreach tactics vary from state to state.

In Montana, which is larger than Nevada but has one-third the population, six people work as navigators. They cover the entire state, reaching Medicaid beneficiaries and people seeking help with coverage by phone or in person by traveling to far-flung communities. For example, a navigator in Billings, in south-central Montana, has worked with the Crow and Northern Cheyenne Tribes, whose reservations lie relatively nearby, said Olivia Riutta, director of population health for the Montana Primary Care Association. But officials struggle to reach northeastern Montana, with its Fort Peck Reservation.

Having navigators in rural communities to help people in person is an ongoing challenge the country faces, said Alker. But the unwinding circumstances make it an especially important moment for the role navigators play in guiding people through complex insurance processes, she said.

This became clear following a recent survey regarding what consumers encounter when independently searching for health coverage on Google. “The results are really concerning,” said survey co-author JoAnn Volk, a research professor and the founder and co-director of the Georgetown University Center on Health Insurance Reforms.

The researchers found that former Medicaid enrollees looking for health plans on the private market face aggressive, misleading marketing of limited-benefit products that don’t cover important services and fail to protect consumers from high health costs.

Researchers shopped for coverage using two profiles of consumers who were losing Medicaid coverage and were eligible for a plan with no premiums or deductibles on the ACA marketplace.

The team reported, though, that none of 20 sales representatives who responded to their queries mentioned that plan, and more than half pushed the limited-benefit products. The representatives also made false and misleading statements about the plans they were touting and misrepresented the availability or affordability of the marketplace plans.

The sales reps and brokers quoted limited plans that cost $200 to $300 a month, Volk said. Such an expense could prove unaffordable for consumers who may still be low-income despite being ineligible for Medicaid.

“If they can’t get to a navigator, I would not trust that they would get to their best coverage option in the marketplace, or to the marketplace at all, frankly,” Volk said.

Making a difficult problem more challenging, the federal government does not require states to break down Medicaid disenrollment data by county, making it harder for experts and researchers to track and differentiate rural and urban concerns. The Center for Children and Families does so with data from the Census Bureau, which Alker pointed out won’t be available until next fall.

A data point that will be important to watch as states continue the redetermination process, Alker said, is call center statistics. People in rural areas rely more heavily on that method of renewing coverage.

“Call abandonment rate” is one such statistic. CMS defines it as the percentage of calls that drop from the queue in two separate measures — calls dropped up to and including 60 seconds, and calls dropped after 60 seconds. In August, the agency sent a letter to the Nevada Department of Health and Human Services about its rate: An average of 56% of calls dropped in May, the first month after Nevada’s unwinding began.

The agency “has concerns that your average call center wait time and abandonment rate are impeding equitable access to assistance and the ability for people to apply for or renew Medicaid and CHIP coverage by phone and may indicate non-compliance with federal requirements,” said Anne Marie Costello, deputy director of CMS.

In the letter, Costello also cited the 45% of Medicaid enrollees whose coverage was terminated for procedural reasons in May.

All 50 states received letters about early data, but only Idaho, South Carolina, Texas, and Utah had higher disenrollment rates than Nevada, and no state had a higher rate of call abandonment.

Officials at Nevada’s Division of Welfare and Supportive Services said its call center, staffed by 277 family service specialists, receives more than 200,000 calls a month. A spokesperson said the phone system offers self-service options whereby customers can obtain information about their Medicaid renewal date and benefit amounts by following prompts. Because those calls aren’t handled by a case manager, they are considered “abandoned,” the spokesperson said, raising the rate even though callers’ questions may have been fully addressed.

People shopping around for coverage after a lapse might go into a panic, Madore said, and the best part of her job is providing relief by helping them understand their options after disenrollment from Medicaid or CHIP.

When people find out the wide range of free services navigators like Madore offer, they’re shocked, she said.

“They’re unaware of how much support we can provide,” Madore said. “I’ve had people call me back and they say, ‘It’s my first time using insurance. Where do I go to urgent care?’”

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Tennessee last year spent $48 million on a single drug, Humira — about $62,000 for each of the 775 patients who were covered by its employee health insurance program and receiving the treatment. So when nine Humira knockoffs, known as biosimilars, hit the market for as little as $995 a month, the opportunity for savings appeared ample and immediate.

But it isn’t here yet. Makers of biosimilars must still work within a health care system in which basic economics rarely seems to hold sway.

For real competition to take hold, the big pharmacy benefit managers, or PBMs, the companies that negotiate prices and set the prescription drug menu for 80% of insured patients in the United States, would have to position the new drugs favorably in health plans.

They haven’t, though the logic for doing so seems plain.

Humira has enjoyed high-priced U.S. exclusivity for 20 years. Its challengers could save the health care system $9 billion and herald savings from the whole class of drugs called biosimilars — a windfall akin to the hundreds of billions saved each year through the purchase of generic drugs.

The biosimilars work the same way as Humira, an injectable treatment for rheumatoid arthritis and other autoimmune diseases. And countries such as the United Kingdom, Denmark, and Poland have moved more than 90% of their Humira patients to the rival drugs since they launched in Europe in 2018. Kaiser Permanente, which oversees medical care for 12 million people in eight U.S. states, switched most of its patients to a biosimilar in February and expects to save $300 million this year alone.

Biologics — both the brand-name drugs and their imitators, or biosimilars — are made with living cells, such as yeast or bacteria. With dozens of biologics nearing the end of their patent protection in the next two decades, biosimilars could generate much higher savings than generics, said Paul Holmes, a partner at Williams Barber Morel who works with self-insured health plans. That’s because biologics are much more expensive than pills and other formulations made through simpler chemical processes.

For example, after the first generics for the blockbuster anti-reflux drug Nexium hit the market in 2015, they cost around $10 a month, compared with Nexium’s $100 price tag. Coherus BioSciences launched its Humira biosimilar, Yusimry, in July at $995 per two-syringe carton, compared with Humira’s $6,600 list price for a nearly identical product.

“The percentage savings might be similar, but the total dollar savings are much bigger,” Holmes said, “as long as the plan sponsors, the employers, realize the opportunity.”

That’s a big if.

While a manufacturer may need to spend a few million dollars to get a generic pill ready to market, makers of biosimilars say their development can require up to eight years and $200 million. The business won’t work unless they gain significant market share, they say.

The biggest hitch seems to be the PBMs. Express Scripts and Optum Rx, two of the three giant PBMs, have put biosimilars on their formularies, but at the same price as Humira. That gives doctors and patients little incentive to switch. So Humira remains dominant for now.

“We’re not seeing a lot of takeup of the biosimilar,” said Keith Athow, pharmacy director for Tennessee’s group insurance program, which covers 292,000 state and local employees and their dependents.

The ongoing saga of Humira — its peculiar appeal to drug middlemen and insurers, the patients who’ve benefited, the patients who’ve suffered as its list price jumped sixfold since 2003 — exemplifies the convoluted U.S. health care system, whose prescription drug coverage can be spotty and expenditures far more unequal than in other advanced economies.

Biologics like Humira occupy a growing share of U.S. health care spending, with their costs increasing 12.5% annually over the past five years. The drugs are increasingly important in treating cancers and autoimmune diseases, such as rheumatoid arthritis and inflammatory bowel disease, that afflict about 1 in 10 Americans.

Humira’s $200 billion in global sales make it the best-selling drug in history. Its manufacturer, AbbVie, has aggressively defended the drug, filing more than 240 patents and deploying legal threats and tweaks to the product to keep patent protections and competitors at bay.

The company’s fight for Humira didn’t stop when the biosimilars finally appeared. The drugmaker has told investors it doesn’t expect to lose much market share through 2024. “We are competing very effectively with the various biosimilar offerings,” AbbVie CEO Richard Gonzalez said during an earnings call.

How AbbVie Maintains Market Share

One of AbbVie’s strategies was to warn health plans that if they recommended biosimilars over Humira they would lose rebates on purchases of Skyrizi and Rinvoq, two drugs with no generic imitators that are each listed at about $120,000 a year, according to PBM officials. In other words, dropping one AbbVie drug would lead to higher costs for others.

Industry sources also say the PBMs persuaded AbbVie to increase its Humira rebates — the end-of-the-year payments, based on total use of the drug, which are mostly passed along by the PBMs to the health plan sponsors. Although rebate numbers are kept secret and vary widely, some reportedly jumped this year by 40% to 60% of the drug’s list price.

The leading PBMs — Express Scripts, Optum, and CVS Caremark — are powerful players, each part of a giant health conglomerate that includes a leading insurer, specialty pharmacies, doctors’ offices, and other businesses, some of them based overseas for tax advantages.

Yet challenges to PBM practices are mounting. The Federal Trade Commission began a major probe of the companies last year. Kroger canceled its pharmacy contract with Express Scripts last fall, saying it had no bargaining power in the arrangement, and, on Aug. 17, the insurer Blue Shield of California announced it was severing most of its business with CVS Caremark for similar reasons.

Critics of the top PBMs see the Humira biosimilars as a potential turning point for the secretive business processes that have contributed to stunningly high drug prices.

Although list prices for Humira are many times higher than those of the new biosimilars, discounts and rebates offered by AbbVie make its drug more competitive. But even if health plans were paying only, say, half of the net amount they pay for Humira now — and if several biosimilar makers charged as little as a sixth of the gross price — the costs could fall by around $30,000 a year per patient, said Greg Baker, CEO of AffirmedRx, a smaller PBM that is challenging the big companies.

Multiplied by the 313,000 patients currently prescribed Humira, that comes to about $9 billion in annual savings — a not inconsequential 1.4% of total national spending on pharmaceuticals in 2022.

The launch of the biosimilar Yusimry, which is being sold through Mark Cuban’s Cost Plus Drugs pharmacy and elsewhere, “should send off alarms to the employers,” said Juliana Reed, executive director of the Biosimilars Forum, an industry group. “They are going to ask, ‘Time out, why are you charging me 85% more, Mr. PBM, than what Mark Cuban is offering? What is going on in this system?’”

Cheaper drugs could make it easier for patients to pay for their drugs and presumably make them healthier. A KFF survey in 2022 found that nearly a fifth of adults reported not filling a prescription because of the cost. Reports of Humira patients quitting the drug for its cost are rife.

Convenience, Inertia, and Fear

When Sue Lee of suburban Louisville, Kentucky, retired as an insurance claims reviewer and went on Medicare in 2017, she learned that her monthly copay for Humira, which she took to treat painful plaque psoriasis, was rising from $60 to $8,000 a year.

It was a particularly bitter experience for Lee, now 81, because AbbVie had paid her for the previous three years to proselytize for the drug by chatting up dermatology nurses at fancy AbbVie-sponsored dinners. Casting about for a way to stay on the drug, Lee asked the company for help, but her income at the time was too high to qualify her for its assistance program.

“They were done with me,” she said. Lee went off the drug, and within a few weeks the psoriasis came back with a vengeance. Sores covered her calves, torso, and even the tips of her ears. Months later she got relief by entering a clinical trial for another drug.

Health plans are motivated to keep Humira as a preferred choice out of convenience, inertia, and fear. While such data is secret, one Midwestern firm with 2,500 employees told KFF Health News that AbbVie had effectively lowered Humira’s net cost to the company by 40% after July 1, the day most of the biosimilars launched.

One of the top three PBMs, CVS Caremark, announced in August that it was creating a partnership with drugmaker Sandoz to market its own cut-rate version of Humira, called Hyrimoz, in 2024. But Caremark didn’t appear to be fully embracing even its own biosimilar. Officials from the PBM notified customers that Hyrimoz will be on the same tier as Humira to “maximize rebates” from AbbVie, Tennessee’s Athow said.

Most of the rebates are passed along to health plans, the PBMs say. But if the state of Tennessee received a check for, say, $20 million at the end of last year, it was merely getting back some of the $48 million it already spent.

“It’s a devil’s bargain,” said Michael Thompson, president and CEO of the National Alliance of Healthcare Purchaser Coalitions. “The happiest day of a benefit executive’s year is walking into the CFO’s office with a several-million-dollar check and saying, ‘Look what I got you!’”

Executives from the leading PBMs have said their clients prefer high-priced, high-rebate drugs, but that’s not the whole story. Some of the fees and other payments that PBMs, distributors, consultants, and wholesalers earn are calculated based on a drug’s price, which gives them equally misplaced incentives, said Antonio Ciaccia, CEO of 46Brooklyn, a nonprofit that researches the drug supply chain.

“The large intermediaries are wedded to inflated sticker prices,” said Ciaccia.

AbbVie has warned some PBMs that if Humira isn’t offered on the same tier as biosimilars it will stop paying rebates for the drug, according to Alex Jung, a forensic accountant who consults with the Midwest Business Group on Health.

AbbVie did not respond to requests for comment.

One of the low-cost Humira biosimilars, Organon’s Hadlima, has made it onto several formularies, the ranked lists of drugs that health plans offer patients, since launching in February, but “access alone does not guarantee success” and doesn’t mean patients will get the product, Kevin Ali, Organon’s CEO, said in an earnings call in August.

If the biosimilars are priced no lower than Humira on health plan formularies, rheumatologists will lack an incentive to prescribe them. When PBMs put drugs on the same “tier” on a formulary, the patient’s copay is generally the same.

In an emailed statement, Optum Rx said that by adding several biosimilars to its formularies at the same price as Humira, “we are fostering competition while ensuring the broadest possible choice and access for those we serve.”

Switching a patient involves administrative costs for the patient, health plan, pharmacy, and doctor, said Marcus Snow, chair of the American College of Rheumatology’s Committee on Rheumatologic Care.

Doctors’ Inertia Is Powerful

Doctors seem reluctant to move patients off Humira. After years of struggling with insurance, the biggest concern of the patient and the rheumatologist, Snow said, is “forced switching by the insurer. If the patient is doing well, any change is concerning to them.” Still, the American College of Rheumatology recently distributed a video informing patients of the availability of biosimilars, and “the data is there that there’s virtually no difference,” Snow said. “We know the cost of health care is exploding. But at the same time, my job is to make my patient better. That trumps everything.”

“All things being equal, I like to keep the patient on the same drug,” said Madelaine Feldman, a New Orleans rheumatologist.

Gastrointestinal specialists, who often prescribe Humira for inflammatory bowel disease, seem similarly conflicted. American Gastroenterological Association spokesperson Rachel Shubert said the group’s policy guidance “opposes nonmedical switching” by an insurer, unless the decision is shared by provider and patient. But Siddharth Singh, chair of the group’s clinical guidelines committee, said he would not hesitate to switch a new patient to a biosimilar, although “these decisions are largely insurance-driven.”

HealthTrust, a company that procures drugs for about 2 million people, has had only five patients switch from Humira this year, said Cora Opsahl, director of the Service Employees International Union’s 32BJ Health Fund, a New York state plan that procures drugs through HealthTrust.

But the biosimilar companies hope to slowly gain market footholds. Companies like Coherus will have a niche and “they might be on the front end of a wave,” said Ciaccia, given employers’ growing demands for change in the system.

The $2,000 out-of-pocket cap on Medicare drug spending that goes into effect in 2025 under the Inflation Reduction Act could spur more interest in biosimilars. With insurers on the hook for more of a drug’s cost, they should be looking for cheaper options.

For Kaiser Permanente, the move to biosimilars was obvious once the company determined they were safe and effective, said Mary Beth Lang, KP’s chief pharmacy officer. The first Humira biosimilar, Amjevita, was 55% cheaper than the original drug, and she indicated that KP was paying even less since more drastically discounted biosimilars launched. Switched patients pay less for their medication than before, she said, and very few have tried to get back on Humira.

Prescryptive, a small PBM that promises transparent policies, switched 100% of its patients after most of the other biosimilars entered the market July 1 “with absolutely no interruption of therapy, no complaints, and no changes,” said Rich Lieblich, the company’s vice president for clinical services and industry relations.

AbbVie declined to respond to him with a competitive price, he said.

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LaFAYETTE, Ala. — Charity Hodge had mixed feelings when she spotted a Facebook post announcing that her longtime primary care doctor was ready to retire after decades of serving their rural community.

“I was like, ‘Oh my gosh, no!’” Hodge recalled while sitting in an exam room on a July afternoon, waiting to see the physician, Terry Vester. “Well, I’m happy for the retirement part, but that’s my favorite doctor, so I’m crying on the inside.”

Hodge, a 29-year-old customer service representative, has been seeing Vester for nine years. She had come to check in on her diabetes management and to ask for anti-nausea medication in preparation for a cruise.

LaFayette — pronounced “luh-FAY-it” by most residents — and surrounding Chambers County face high rates of disease and chronic illness. Yet Terry Vester and her husband, Al, are the only primary care doctors in the town of 2,700 residents, surrounded by farms and other small communities.

The Vesters are in their late 60s and would like to retire soon. Terry Vester wants to spend more time with her grandson and aging parents. But she can’t imagine abandoning her patients, some of whom she has cared for since they were born.

“There are people here that still need in-town doctors,” said Vester, who sometimes visits patients in their homes. “So we want to stay here to take care of them until someone else is here to take care of them.”

Terry Vester’s worry — leaving her town with no doctors — is already reality across much of rural America, where many residents have health problems but few health care professionals to turn to.

LaFayette, in east-central Alabama near the border with Georgia, is a 30-minute drive to the nearest sizable city, the college town of Auburn. Its lush, wooded neighborhoods include elegant, restored homes with wraparound porches and massive lawns. But the town also has formerly grand houses that have fallen into disrepair, plus mobile homes and public housing.

The town’s median household income is much lower than the state’s and country’s. Black residents — who make up 70% of the population — are much more likely to live in poverty than white residents. They are also more likely to attend the public high school, whose student body is 90% Black and which is scheduled to close and consolidate with a majority-white school in another community.

The Vesters have worked in LaFayette since the early 1980s and saw the local hospital close in 1988. The nearest emergency room is now in another town 20 minutes away along a rolling road. So are the nearest urgent care clinic and pediatrician’s office.

To fill that void, residents turn to the one place in LaFayette where medical professionals are always on the clock: the city fire department, staffed with full-time firefighters and emergency medics.

Fire Chief Jim Doody worked for 13 years as the fire chief at Bagram Airfield in Afghanistan. He arrived in LaFayette in 2020, just as the county was about to be hit by one of the worst covid-19 outbreaks in Alabama.

Doody said most of the station’s ambulance runs are for nonemergency situations. Other calls involve urgent issues that could have been headed off if patients had better access to preventive care.

People from LaFayette regularly walk or drive themselves to the fire station to ask for help, Doody said. The station has a makeshift exam area within its small entryway, containing a bench, defibrillator machine, and cabinet filled with medical supplies.

Firefighter Tanner Hill said people often arrive with concerns about fatigue, blood sugar levels, breathing difficulties, or heart trouble. He recalled helping a man who walked into the station after getting hit by a car.

“He was just like, ‘Hey, I just got run over.’ And I was like, ‘Oh, OK, well, let me check you out.’ And sure enough, he got run over,” Hill said.

Hill determined the man’s leg was broken and sent him by ambulance to the nearest hospital.

This de facto walk-in clinic option isn’t available in most other rural areas, where emergency medical services are often run by volunteers who aren’t posted at a station all day, Doody said. But he’s noticed fewer LaFayette residents relying on the fire department since a new telehealth service arrived in town.

Rickey Whitlow was recently driving in LaFayette when he saw a sign touting the new option.

The 61-year-old was intrigued. He parked his car and walked into a new health center that also houses an OnMed Care Station, a large booth stocked with a video screen and high-tech health monitoring equipment.

Whitlow was scheduled for his monthly diabetes checkup with physician Al Vester in a few weeks. But his feet felt like they were burning, and he needed relief now.

Whitlow stepped into the telehealth kiosk, pressed a button, and saw a nurse practitioner appear on a large vertical video screen positioned at eye level. After consulting with the provider, he left the free appointment with a prescription for a cream to relieve his foot pain.

OnMed patients use an automated blood pressure cuff and other devices to collect their vital signs, and the data is sent to the provider treating them from a distance. Patients can also hold a stethoscope to their chest to transmit the sounds of their heart and lungs. A special camera captures internal temperatures, which can be used to diagnose infections. A hand-held camera lets providers examine problems such as rashes, irritated eyes, and swollen throats. In some states, the stations can dispense medications.

OnMed, a Florida-based company, has another kiosk in rural Texas and hopes to open several dozen more in various states next year. The company wants to keep its services free for patients, with funding from universities, health systems, nonprofits, and insurance companies.

The kiosks can stay open on evenings and weekends and are much cheaper to operate than brick-and-mortar doctor’s offices, said CEO Tom Vanderheyden. They also make telehealth available to rural residents whose home internet connections are too weak for video appointments.

LaFayette’s OnMed kiosk is part of a new health center inside a building that has seen several medical facilities come and go.

The Chambers County Community Health and Wellness Center is operated by Auburn University, whose students and faculty travel there to host vaccination and diagnostic clinics, such as speech and hearing exams. They also offer health education events on topics such as healthy eating and maternal health.

The university plans to bring similar centers and OnMed kiosks to other rural Alabama towns.

Vester, the longtime primary care physician, is excited about the new health care resources in LaFayette. But she said it’s still important to have doctors in town.

“You know everyone, or you have a connection with someone,” Vester said.

Vester’s statement rang true during recent appointments as she asked about her patients’ lives and relatives.

“Deep breath,” Vester instructed as she placed a stethoscope on Hodge’s chest.  “Are you still at home with your mother? Is she doing good?”

“Yes, she’s doing very well,” Hodge said.

Earlier that day, Vester treated a patient who had throat pain and difficultly speaking after surviving a choking incident. During the appointment, the patient mentioned an upcoming funeral.

Vester knew about the funeral. It was for a woman she once treated.

“I see her daughters and then their children, and they have children — so that’s four generations right there,” Vester said. “And so, you sort of know the whole story, you know the context.”

Vester plans to reach out to Alabama medical schools to let them know she’s looking for doctors to take over for her and her husband. But she said not everyone wants to live in rural areas like LaFayette.

The doctor hopes some of the Auburn students will want to serve in LaFayette after seeing what it’s like working at the new health center. She said it’s nice to live in a small, quiet town that’s relatively close to larger cities, and to run an independent clinic rather than work for a larger health system.

Vester said the charm of LaFayette and its residents is also a selling point.

“All they have to do is pretty much come here and spend a day and go through what we do, and I think they would enjoy it,” she said.

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As Americans consider whether to take advice from federal health officials and get an updated covid vaccine, Florida Gov. Ron DeSantis is drumming the message that ignited his national political career: Ignore what the federal government tells you about covid-19.

Last week — as polling showed him running a distant second to Donald Trump for the Republican presidential nomination — DeSantis convened a virtual roundtable featuring a panel of covid vaccine skeptics. Their mission: to swat away the FDA’s findings that the new shots are safe and effective for those 6 months and older.

Instead, they advised those younger than 65 not to get vaccinated, suggesting without evidence that the shots could be harmful.

“I will not stand by and let the FDA and CDC use healthy Floridians as guinea pigs for new booster shots that have not been proven to be safe or effective,” said DeSantis, contradicting the FDA’s findings. “Once again, Florida is the first state in the nation to stand up and provide guidance based on truth, not Washington edicts.”

Backing up DeSantis was the handpicked keeper of his public health strategy: his state’s surgeon general, Joseph Ladapo.

“My judgment is that it’s not a good decision for young people and for people who are not at high risk at this point in the pandemic,” Ladapo said.

Ladapo has come under fire from public health experts since DeSantis tapped him for the role. He has been rebuked by federal health officials for promoting misinformation about covid and vaccines generally. And a report by the faculty of the University of Florida’s College of Medicine expressed “concern for research integrity violations” in a state health department study that suggested receiving an mRNA vaccine against covid increased the risk of death among young men.

Ladapo personally altered the study’s findings, Politico reported. And research has shown the risk of cardiac complications among young men is up to 5.6 times as high after covid infection as after covid vaccination.

With public health officials facing an uphill battle to persuade Americans to get one of the updated vaccines — just 17% received the 2022 booster — DeSantis’ tactic could further depress uptake by stoking doubts about the vaccines.

DeSantis is “playing with fire, and this is about life and death,” said Donna Shalala, who served as U.S. Health and Human Services secretary during the Clinton administration and later represented Florida in Congress.

“But I think people will see it for what it is: a desperate attempt at very high risk to people in Florida to reposition himself,” she said.

DeSantis trails Trump by more than 40 points, on average, in polls of GOP primary voters, a gap that has widened despite the governor’s recent efforts to reboot his campaign.

More than 90,000 people in Florida have died from covid-19.

And, while there have been a few serious side effects associated with covid vaccines, their incidence is rare and several studies have shown that vaccinated people are at no greater risk of death from non-covid causes than those who are unvaccinated. More than 600 million doses of covid vaccines have been administered in the U.S., according to Our World in Data.

That information was not mentioned in the discussion last week, when the panel — which notably included no vaccine or infectious disease experts — said without evidence that the shots might have “negative efficacy” or even cause increased infection from the virus.

DeSantis and Ladapo said they were troubled by the lack of human trials before the latest covid vaccines were authorized — though they did not address why they might be less concerned about the risks for those age 65 and older.

Annual flu vaccines also do not undergo clinical testing on humans. But Ladapo called it “sleight of hand” to compare the covid boosters to the flu vaccine, because it has been around for decades. “It is a completely different phenomenon,” he said.

The Florida Health Department did not respond to questions about whether it recommends the flu vaccine in light of its dearth of human testing.

Daniel Salmon, a vaccine expert at Johns Hopkins University who watched the roundtable, said he took issue with the claim that there wasn’t clinical data supporting the new vaccines’ safe use. Like the flu vaccine, the primary covid vaccines went through clinical trials, and there wouldn’t be time to conduct one every time a new strain emerges, he said.

The discussion was not a robust debate around scientific uncertainty among experts, Salmon said. He noted the panelists’ lack of expertise and training in vaccines and infectious disease, saying they instead leaned on their positions as physicians, academics, and the Florida surgeon general to give them credibility.

“They don’t know covid,” Salmon said. “They’re cherry-picking facts to defend their position. And they don’t have the expertise to make those decisions for a large number of people.”

“It felt to me like they were trying to sow doubt,” he said, “and that’s dangerous.”

Polling by the nonprofit health organization KFF shows that most Americans encounter health misinformation, and many are uncertain about the veracity of claims about the covid vaccines.

DeSantis built his national reputation on bucking the medical establishment and ending 2020’s pandemic lockdown earlier in Florida than many other states did. He also has gained a following — and raised money — by criticizing the federal government under President Joe Biden and guidance from the nation’s former top infectious disease expert, Anthony Fauci, who left his post at the National Institutes of Health in December.

DeSantis’ handling of the covid response helped propel him to a massive reelection victory last year and to the front of the pack of 2024 Republican presidential contenders this spring.

David Richards, chair of the International Relations and Political Science Department at Lynchburg University in Virginia, said he is not surprised by DeSantis’ approach to the updated vaccines given his polling numbers, his reputation for pushing “medical freedom,” and his general vaccine policies.

“He needs to remain relevant and set himself apart from other candidates,” he said.

Last year, DeSantis opposed providing covid vaccines to young children after Florida came under fire for being the only state not to preorder doses ahead of the federal government’s approval of vaccination for children under 5.

This year, DeSantis urged Florida’s GOP-controlled legislature to approve pandemic-related legislation that runs counter to some public health recommendations, including measures to permanently ban school mask mandates and bar businesses from firing employees who don’t get vaccinated.

Matt Dallek, a political historian at George Washington University in Washington, D.C., said DeSantis’ messaging on the new covid vaccines shows his desire to distance himself from Trump — even though Trump’s 2018 endorsement led to his winning the Florida governor’s race.

“This is a way for him to exploit the issue, though it may come at the expense of lives of anyone who would listen to him in Florida and elsewhere,” he said.

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Amy Maxmen

Nurses, researchers, and workplace safety officers worry new guidelines from the Centers for Disease Control and Prevention might reduce protection against the coronavirus and other airborne pathogens in hospitals.

A CDC advisory committee has been updating its 2007 standards for infection control in hospitals this year. Many health care professionals and scientists expressed outrage after the group released a draft of its proposals in June.

The draft controversially concluded that N95 face masks are equivalent to looser, surgical face masks in certain settings — and that doctors and nurses need to wear only surgical masks when treating patients infected by “common, endemic” viruses, like those that cause the seasonal flu.

The committee was slated to vote on the changes on Aug. 22, but it postponed action until November. Once the advice is final, the CDC begins a process of turning the committee’s assessment into guidelines that hospitals throughout the United States typically follow. After the meeting, members of the public expressed concern about where the CDC was headed, especially as covid-19 cases rise. Nationwide, hospital admissions and deaths due to covid have been increasing for several consecutive weeks.

“Health care facilities are where some of the most vulnerable people in our population have to frequent or stay,” said Gwendolyn Hill, a research intern at Cedars-Sinai Medical Center in Los Angeles, after the committee’s presentation. She said N95 masks, ventilation, and air-purifying technology can lower rates of covid transmission within hospital walls and “help ensure that people are not leaving sicker than they came.”

“We are very happy to receive feedback,” Alexander Kallen, chief of the Prevention and Response Branch in the CDC’s Division of Healthcare Quality Promotion, told KFF Health News. “It is our goal to develop a guideline that is protective of patients, visitors, and health workers.” He added that the draft guidelines are far from final.

In June, members of the CDC’s group — the Healthcare Infection Control Practices Advisory Committee — presented a draft of their report, citing studies that found no difference in infection rates among health providers who wore N95 masks versus surgical masks in the clinic. They noted flaws in the data. For example, many health workers who got covid in the trials were not infected while wearing their masks at work. But still, they concluded the masks were equivalent.

Their conclusion runs contrary to the CDC’s 2022 report, which found that an N95 mask cuts the odds of testing positive for the coronavirus by 83%, compared with 66% for surgical masks and 56% for cloth masks. It also excludes a large clinical trial published in 2017 finding that N95 masks were far superior to surgical masks in protecting health workers from influenza infections. And it contradicts an extensive evaluation by the Royal Society, the United Kingdom’s national academy of sciences, finding that N95 masks, also called N95 respirators, were more effective against covid than surgical masks in health care settings around the world.

“It’s shocking to suggest that we need more studies to know whether N95 respirators are effective against an airborne pathogen,” said Kaitlin Sundling, a physician and pathologist at the University of Wisconsin-Madison, in a comment following the June meeting. “The science of N95 respirators is well established and based on physical properties, engineered filtered materials, and our scientific understanding of how airborne transmission works.”

Her assertion is backed by the California occupational safety agency, Cal/OSHA, whose rules on protecting at-risk workers from infections might be at odds with the CDC’s if the proposals are adopted. “The CDC must not undermine respiratory protection regulation by making the false and misleading claim that there is no difference in protection” between N95 masks and surgical masks, commented Deborah Gold, an industrial hygienist at Cal/OSHA, at the August meeting.

Researchers and occupational safety experts were also perplexed by how the committee categorized airborne pathogens. A surgical mask, rather than an N95, was suggested as protection for a category they created for “common, endemic” viruses that spread over short distances, and “for which individuals and communities are expected to have some immunity.” Three committee representatives, researchers Hilary Babcock, Erica Shenoy, and Sharon Wright, were among the authors of a June editorial arguing that hospitals should no longer require all health care workers, patients, and visitors to wear masks in hospitals. “The time has come to deimplement policies that are not appropriate for an endemic pathogen,” they wrote.

However, in a call with KFF Health News, Kallen clarified that the committee put coronaviruses that cause colds in that category, but not yet the coronavirus causing covid.

The committee’s next tier consisted of viruses in a “pandemic-phase,” when the pathogen is new and little immunity through infection or vaccination exists. It recommended that health workers wear an N95 mask when treating patients infected by bugs in this category. Its third, highest tier of protection was reserved for pathogens like those causing measles and tuberculosis, which, they claimed, can spread further than lower-tier threats and require an N95.

Virologists said the committee’s categories hold little water, biologically speaking. A pathogen’s mode of spreading isn’t affected by how common it is; common viruses can still harm vulnerable populations; and many viruses, including SARS-CoV-2, can travel significant distances on microscopic droplets suspended in the air.

“Large COVID outbreaks in prisons and long-term health care facilities have demonstrated that the behavior of infectious aerosols is not easily classified, and these aerosols are not easily confined,” wrote the deputy chief of health at Cal/OSHA, Eric Berg, in a letter of concern to the CDC committee, obtained by KFF Health News.

The committee pitted its assessment of N95 masks against their drawbacks. Its draft cites a study from Singapore in which nearly a third of health care personnel, mostly nurses, said wearing such masks negatively affected their work, causing acne and other problems exacerbated by hot and humid conditions and prolonged shifts. Rather than discard the masks, the authors of that study recommend better-fitting masks and rest breaks.

Noha Aboelata, a doctor and the CEO of Roots Community Health Center in Oakland, California, agrees. “There are other strategies to bring to bear, like improved mask design and better testing,” she said, “if we decide it’s unacceptable to give a patient covid when they go to the hospital.”

Aboelata is one of hundreds of doctors, researchers, and others who signed a letter to CDC Director Mandy Cohen in July, expressing concern that the CDC committee will weaken protections in hospitals. They also warned that scaling back on N95 masks could have repercussions on emergency stockpiles, rendering doctors and nurses as vulnerable as they were in 2020 when mask shortages fueled infections. More than 3,600 health workers died in the first year of the pandemic in the United States, according to a joint investigation by KFF Health News and The Guardian.

The concerned clinicians hope the committee will reconsider its report in light of additional studies and perspectives before November. Referring to the draft, Rocelyn de Leon-Minch, an industrial hygienist for National Nurses United, said, “If they end up codifying these standards of care, it will have a disastrous impact on patient safety and impact our ability to respond to future health crises.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The California Legislature passed a pair of bills greenlighting Gov. Gavin Newsom’s campaign to build 10,000 new beds and housing units and increase drug addiction treatment as part of his response to the state’s homelessness and drug crises. The Democratic governor is expected to sign the bills, which received bipartisan support.

The first bill, SB 326, is designed to transform the state’s Mental Health Services Act into the Behavioral Health Services Act, using an existing tax on millionaires to treat the most seriously mentally ill and to increase programs for substance use disorders. The second, AB 531, authorizes the state to issue $6.38 billion in bonds to build more housing for homeless people and treatment beds for those with the most severe needs.

Newsom will now ask voters to approve the changes on the March primary ballot.

“This reform will bring much needed accountability currently lacking at the local and state level, increased transparency and visibility into the whole mental health and addiction treatment system, and a modernized focus to address today’s crises,” Newsom said in a statement.

According to a June statewide study on homelessness by the University of California-San Francisco, more than 171,000 Californians experience homelessness daily, representing 30% of the nation’s homeless population. The majority of participants in the study reported high lifetime rates of mental health and substance use challenges; 82% reported a period in their life in which they experienced a serious mental health condition, and nearly two-thirds reported the use of illicit drugs or heavy drinking.

The mental health act was passed as Proposition 63 by voters in 2004 and levied a tax of 1% on income above $1 million, known as the “millionaire’s tax.” That money then flowed from the state to counties for use in five mental health areas, including community support, prevention, and facilities. Funding changes year to year, but the tax generated $3.3 billion in the 2022-23 fiscal year, according to the nonpartisan Legislative Analyst’s Office.

However, the program has been criticized over the years for falling short of its initial promise. Last year, the Los Angeles Times highlighted several reasons, including revenue swings, consistent underfunding of social and mental health programs, tension between state and county officials, and a shortage of mental health clinicians.

Newsom pledged that the newly renamed Behavioral Health Services Act would build 10,000 new beds and housing units for people experiencing homelessness who have behavioral health needs. It would also focus on diversifying the workforce and improving accountability — tracking outcomes in a more detailed way — so the government can understand what’s working and what’s not.

However, counties that administer this money at the local level have raised concerns. A letter from the California State Association of Counties and other organizations representing local government interests expressed fear that Newsom’s proposal would result in counties receiving significantly less funding for core services, little protection from fluctuation in funds, and less flexibility in spending.

The governor’s office emphasized that new requirements still provide flexibility.

Assembly member Jacqui Irwin (D-Thousand Oaks), who was the lead author of the bond bill and served for seven years as the chair of the body’s Military and Veterans Affairs Committee, is particularly proud of a provision that will reserve $1.07 billion for housing for veterans. California has the largest number of veterans experiencing homelessness — 31% of the nation’s homeless veteran population — according to a 2021 homelessness report by the U.S. Department of Housing and Urban Development.

“Getting veterans experiencing homelessness off the streets has long been a priority for California, but getting some of our most vulnerable veterans into needed treatment for behavioral health challenges will be transformative,” Irwin said.

Sen. Susan Talamantes Eggman (D-Stockton), who co-authored the bond bill and was the lead author of the other bill, said the bills are critical to the state’s continuum of care. “Together they will build out voluntary housing, reprioritize resources to those with the greatest needs, and provide a true safety net to prevent the many people falling through the cracks that we see today,” she said.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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