Nearly two hours into a Capitol Hill hearing focused on rural health, Rep. Brad Wenstrup emphatically told the committee's five witnesses: "Hang with us."
Federal lawmakers face a year-end deadline to solidify or scuttle an array of COVID-era payment changes for telehealth services that include allowing people to stay in their homes to see a doctor or therapist.
During the hearing in early March, Wenstrup and other House members offered personal anecdotes on how telehealth, home visits, and remote monitoring helped their patients, relatives, and constituents. Wenstrup, a Republican from Ohio who is also a podiatric surgeon and a retired Army reservist, told the audience: "Patients are less anxious and heal better when they can be at home."
Most of the proposals focus on how Medicare covers telehealth services. But the rules affect patients on all types of insurance plans because typically private insurers and some government programs follow Medicare's example. Without congressional action, virtual health care services like audio-only calls or meeting online with specialty doctors — such as an occupational therapist — could end. The bills would also continue to allow rural health clinics and other health centers to offer telehealth services while waiving a requirement for in-person mental health visits.
Telehealth use ballooned in the early months of the COVID-19 pandemic and grew into a household term. The practice has become a popular issue for lawmakers on both sides of the aisle.
In one U.S. Census Bureau survey conducted from April 2021 to August 2022, Medicare and Medicaid enrollees reported using telehealth visits the most — 26.8% and 28.3%, respectively. The survey of nearly 1.2 million adults also found that Black patients and those earning less than $25,000 reported high rates of telehealth use. Notably, people of color were more likely to use audio-only visits.
Ensuring access to telehealth services "is the best public policy," said Debbie Curtis, a vice president of McDermott+Consulting, a Washington, D.C.-based health care lobbying firm. "It's the best business outcome. It's the best patient care outcome."
But it's a presidential election year and Congress is a "deadline-driven organization," Curtis said. She expects that Congress will be "kicking the can" past the November election.
Kyle Zebley, senior vice president of public policy at the American Telemedicine Association who also lobbies on Capitol Hill, said Congress "might well be in that lame-duck period." "This is no way to run a healthcare system on a popular bipartisan issue," he said.
In January, lawmakers — including senators from Mississippi and South Dakota — sent a letter to the Biden administration urging the White House to work quickly with Congress to ensure payments continue for Medicare patients who use telehealth, "especially for rural and underserved communities."
Maya Sandalow, a senior policy analyst for the Bipartisan Policy Center, a Washington, D.C.-based think tank, said lawmakers and policymakers are likely to consider a temporary extension of the payments rather than permanent changes.
"Research is still coming out that covers more recent years than the acute effects of the pandemic," Sandalow said. The center expects to release policy recommendations in the coming months.
Questions being considered include which kind of health care services are best for audio-only and video visits. Sandalow said researchers are also weighing how telehealth can "expand access to affordable, high-quality care while ensuring in-person options remain for patients."
In North Dakota, Sanford Health's David Newman said virtual care is often the only way some of his patients in the western part of the state can get sub-specialty care, such as with behavioral health.
Newman, an endocrinologist and Sanford's medical officer of virtual care, said 10% to 20% of his patients are seen virtually during the summer, as compared with about 40% in the winter months because "the weather can be so bad" that roads are impassable.
In winters past, Newman would sit around "doing nothing for a day" because patients couldn't visit him. Now, he has a full clinic using telehealth technology.
"I tell my patients that if you can make a restaurant reservation or if you can order a pizza online, you can do a virtual visit," Newman said.
Until last week, the system that is used to enroll people in federal Affordable Care Act insurance plans inadvertently allowed access by insurance brokers to consumers' full Social Security numbers, information brokers don't need.
That raised concerns about the potential for misuse.
The access to policyholders' personal information was one of the problems cited in a KFF Health News article describing growing complaints about rogue agents enrolling people in ACA coverage, also known as Obamacare, or switching consumers' plans without their permission in order to garner the commissions. The consumers are often unaware of the changes until they go to use their plan and find their doctors are not in the new plan's network or their drugs are not covered.
Agent Joshua Brooker told KFF Health News it was relatively easy for agents to access full Social Security numbers through the federal insurance marketplace's enrollment platforms, warning that "bad eggs now have access to all this private information about an individual."
On April 1, the morning the article was posted on NPR's website, Brooker said, he got a call from the Centers for Medicare & Medicaid Services questioning the accuracy of his comments.
A CMS representative told him he was wrong and that the numbers were hidden, Brooker said April 7. "I illustrated that they were not," he said.
After he showed how the information could be accessed, "the immediate response was a scramble to patch what was acknowledged as 'problematic,'" Brooker posted to social media late last week.
After some phone calls with CMS and other technical experts, Brooker said, the federal site and direct enrollment partner platforms now mask the first six digits of the SSNs.
"It was fixed Wednesday evening," Brooker told KFF Health News. "This is great news for consumers."
An April 8 written statement from CMS said the agency places the highest priority on protecting consumer privacy.
"Upon learning of this system vulnerability, CMS took immediate action to reach out to the direct enrollment platform where vulnerability was identified to make sure it was addressed," wrote Jeff Wu, acting director of the Center for Consumer Information & Insurance Oversight at CMS.
He added that the Social Security numbers were not accessible through routine use of the platform but were in a portion of the site called developer tools. "This issue does not impact healthcare.gov," Wu wrote.
Brooker's concern about Social Security numbers centered on access by licensed agents to existing policyholder information though the federal marketplace, not including the parts of healthcare.gov used by consumers, who cannot access anything but their own accounts.
While consumers can enroll on their own, many turn to agents for assistance. There are about 70,000 licensed agents nationwide certified to use the healthcare.gov site or its partner enrollment platforms. They must meet certain training and licensing requirements to do so. Brooker has been quick to say it is a minority of agents who are causing the problem.
But agents increasingly are frustrated by what they describe as a sharp increase during the second half of 2023 and into 2024 of unscrupulous rivals switching people from one plan to another, or at least switching the "agent of record" on the accounts, which directs the commission to the new agent. Wu's statements have so far not included requested information on the number of complaints about unauthorized switching, or the number of agents who have been sanctioned as a result.
The changes shielding the Social Security numbers are helpful, Brooker said, but won't necessarily slow unauthorized switching of plans. Rogue agents can still switch an enrollee's plan with simply their name, date of birth, and state of residence, despite rules that require agents to collect written or recorded consent from consumers before making any changes.
In Matthew Roach's two years as vital statistics manager for the Arizona Department of Health Services, and 10 years previously in its epidemiology program, he has witnessed a trend in mortality rates that has rural health experts worried.
As Roach tracked the health of Arizona residents, the gap between mortality rates of people living in rural areas and those of their urban peers was widening.
The health disparities between rural and urban Americans have long been documented, but a recent report from the Department of Agriculture's Economic Research Service found the chasm has grown in recent decades. In their examination, USDA researchers found rural Americans from the ages of 25 to 54 die from natural causes, like chronic diseases and cancer, at wildly higher rates than the same age group living in urban areas. The analysis did not include external causes of death, such as suicide or accidental overdose.
The research analyzed Centers for Disease Control and Prevention death data from two three-year periods — 1999 through 2001 and 2017 through 2019. In 1999, the natural-cause mortality rate for people ages 25 to 54 in rural areas was only 6% higher than for city dwellers in the same age bracket. By 2019, the gap widened to 43%.
The researchers found the expanding gap was driven by rapid growth in the number of women living in rural places who succumb young to treatable or preventable diseases. In the most rural places, counties without an urban core population of 10,000 or more, women in this age group saw an 18% increase in natural-cause mortality rates during the study period, while their male peers experienced a 3% increase.
Within the prime working-age group, cancer and heart disease were the leading natural causes of death for both men and women in both rural and urban areas. Among women, the incidence of lung disease in remote parts of the nation grew the most when compared with rates in urban areas, followed by hepatitis. Pregnancy-related deaths also played a role, accounting for the highest rate of natural-cause mortality growth for women ages 25 to 54 in rural areas.
The negative trends for rural non-Hispanic American Indian and Alaska Native people were especially pronounced. The analysis shows Native Americans 25 to 54 years old had a 46% natural-cause mortality rate increase over those two decades. Native women had an even greater mortality rate jump, 55%, between the two studied time periods, while the rate for non-Hispanic White women went up 23%.
The rural-urban gap grew in all regions across the nation but was widest in the South.
The increased mortality rates are an indicator of worsening population health, the study authors noted, which can harm local economies and employment.
As access to and quality of health services in rural areas continue to erode, rural health experts said, the USDA findings should spur stronger policies focused on rural health.
Alan Morgan, CEO of the National Rural Health Association, said he found the report "shocking," though, "unfortunately, not surprising."
The disparity warrants greater attention from state and national leaders, Morgan said.
The study does not address causes for the increase in mortality rates, but the authors note that differences in healthcare resources could compromise the accessibility, quality, and affordability of care in rural areas. Hospitals in small and remote communities have long struggled, and continued closures or conversions limit healthcare services in many places. The authors note that persistently higher rates of poverty, disability, and chronic disease in rural areas, compounded by fewer physicians per capita and the closure of hospitals, affect community health.
Roach said his past job as an epidemiologist included working with social vulnerability indexes, which factor in income, race, education, and access to resources like housing to get a sense of a community's resilience against adverse health outcomes. A map of Arizona shows that rural counties and reservations have some of the highest vulnerability rankings.
Janice C. Probst, a retired professor at the University of South Carolina whose work focused on rural health, said many current rural health efforts are focused on sustaining hospitals, which she noted are essential sources of healthcare. But she said that may not be the best way to address the inequities.
"We may have to take a community approach," said Probst, who reviewed the report before its release. "Not how do we keep the hospital in the community, but how do we keep the community alive at all?"
The disparities among demographics stood out to Probst, along with something else. She said the states with the highest rates of natural-cause mortality in rural areas included South Carolina, Mississippi, Georgia, Alabama, and others that have not expanded Medicaid, the joint federal and state health insurance program for low-income people, though there are efforts to expand it in some states, particularly Mississippi.
It's an observation the USDA researchers make as well.
"Regionally, differences in State implementation of Medicaid expansion under the 2010 Affordable Care Act could have increased implications for uninsured rural residents in States without expansions by potentially influencing the frequency of medical care for those at risk," they wrote.
Wesley James, founding executive director of the Center for Community Research and Evaluation, at the University of Memphis, said state lawmakers could address part of the problem by advocating for Medicaid expansion in their states, which would increase access to healthcare in rural areas. A large group of people want it, but politicians aren't listening to their needs, he said. James also reviewed the report before it was published.
According to KFF polling, two-thirds of people living in nonexpansion states want their state to expand the health insurance program.
Morgan added the study focused on deaths that occurred prior to the COVID-19 pandemic, which had a devastating effect in rural areas.
"COVID really changed the nature of public health in rural America," he said. "I hope that this prompts Congress to direct the CDC to look at rural-urban life expectancies during COVID and since COVID to get a handle on what we're actually seeing nationwide."
In Arizona, the leading cause of death for people 45 to 64 in 2021 in both rural and urban areas was COVID, according to Roach.
When the FDA recently convened a committee of advisers to assess a cardiac device made by Abbott, the agency didn't disclose that most of them had received payments from the company or conducted research it had funded — information readily available in a federal database.
One member of the FDA advisory committee was linked to hundreds of payments from Abbott totaling almost $200,000, according to a database maintained by the Department of Health and Human Services. Another was connected to 100 payments totaling about $100,000 and conducted research supported by about $50,000 from Abbott. A third member of the committee worked on research supported by more than $180,000 from the company.
The government database, called "Open Payments," records financial relationships between doctors and certain other health care providers and the makers of drugs and medical devices. KFF Health News found records of Abbott payments associated with 10 of the 14 voting members of the FDA advisory panel, which was weighing clinical evidence for a heart device called TriClip G4 System. The money, paid from 2016 through 2022 — the most recent year for which the database shows payments — adds up to about $650,000.
The panel voted almost unanimously that the benefits of the device outweigh its risks. Abbott announced on April 2 that the FDA had approved TriClip, which is designed to treat leakage from the heart's tricuspid valve.
The Abbott payments illustrate the reach of medical industry money and the limits of transparency at the FDA. They also shed light on how the agency weighs relationships between people who serve on its advisory panels and the makers of drugs and medical devices that those committees review as part of the regulatory approval process.
The payments do not reflect wrongdoing on the part of the agency, its outside experts, or the device manufacturer. The database does not show that any of the payments were related directly to the TriClip device.
But some familiar with the process, including people who have served on FDA advisory committees, said the payments should have been disclosed at the Feb. 13 meeting — if not as a regulatory requirement, then in the interest of transparency, because the money might call into question committee members' objectivity.
"This is a problem," Joel Perlmutter, a former FDA advisory committee member and a professor of neurology at Washington University School of Medicine in St. Louis, said by email. "They should or must disclose this due to bias."
The Open Payments database records several kinds of payments from drug and device makers. One category, called "associated research funding," supports research in which a physician is named a principal investigator in the database. Another category, called "general payments," includes consulting fees, travel expenses and meals connected to physicians in the database. The money can flow from manufacturers to third parties, such as hospitals, universities, or other corporate entities, but the database explicitly connects doctors by name to the payments.
At the public meeting to consider the TriClip device, an FDA official announced that committee members had been screened for potential financial conflicts of interest and found in compliance with government requirements.
FDA spokesperson Audra Harrison said by email that the agency doesn't comment on matters related to individual advisory committee members.
"The FDA followed all appropriate procedures and regulations in vetting these panel members and stands firmly by the integrity of the disclosure and vetting processes in place," she said. "This includes ensuring advisory committee members do not have, or have the appearance of, a conflict of interest."
Abbott "has no influence over who is selected to participate in FDA advisory committees," a spokesperson for the company, Brent Tippen, said in a statement.
Diana Zuckerman, president of the National Center for Health Research, a think tank, said the FDA shouldn't have allowed recipients of funding from Abbott in recent years to sit in judgment of the Abbott product. The agency takes too narrow a view of what should be disqualifying, she said.
One committee member was Craig Selzman, chief of the Division of Cardiothoracic Surgery at the University of Utah. The Open Payments database connects to Selzman about $181,000 in associated research funding from Abbott to the University of Utah Hospitals & Clinics.
Asked in an interview if a reasonable person could question the impartiality of committee members based on the Abbott payments, Selzman said: "People from the outside looking in would probably say yes."
He noted that Abbott's money went to the university, not to him personally. Participating in industry-funded clinical trials benefits doctors professionally, he said. He added: "There's probably a better way to provide transparency."
The FDA has a history of appointing people to advisory committees who had relationships with manufacturers of the products under review. For example, in 2020, the doctor who chaired an FDA advisory committee reviewing Pfizer's covid-19 vaccine had been a Pfizer consultant.
Appearance Issues
FDA advisory committee candidates, selected to provide expert advice on often complicated drug and device applications, must complete a confidential disclosure report that asks about current and past financial interests as well as "anything that would give an ‘appearance' of a conflict."
The FDA has discretion to decide whether someone with an "appearance issue" can serve on a panel, according to a guidance document posted on the agency's website. Relationships more than a year in the past generally don't give rise to appearance problems, according to the document, unless they suggest close ties to a company or involvement with the product under review. The main question is whether financial interests would cause a reasonable person to question the member's impartiality, the document says.
The FDA draws a distinction between appearance issues and financial conflicts of interest. Conflicts of interest occur when someone chosen to serve on an advisory committee has financial interests that "may be impacted" by their work on the committee, an FDA explainer says.
If the FDA finds a conflict of interest but still wants the applicant on a panel, it can issue a public waiver. None of the panelists voting on TriClip received a waiver.
The FDA's approach to disclosure contrasts with rules for conferences at which doctors earn credit for continuing medical education. For example, for a recent conference in Boston on technology for treatment of heart failure, including TriClip, the group holding the meeting directed speakers to include in their slide presentations disclosures going back 24 months.
Those disclosures — naming companies from which speakers had received consulting fees, grant support, travel expenses, and the like — also appeared on the conference website.
'Unbridled Enthusiasm'
The FDA has designated TriClip a "breakthrough" device with "the potential to provide more effective treatment or diagnosis of a life-threatening or irreversibly debilitating disease" compared with current treatments, an agency official, Megan Naber, told the advisory committee.
Naber said that for breakthrough devices, the "totality of data must still provide a reasonable assurance of safety and effectiveness" but the FDA "may be willing to accept greater uncertainty" about the balance of risks and benefits.
In a briefing paper for the advisory committee, FDA staff pointed out findings from a clinical trial that didn't reflect well on TriClip. For example, patients treated with TriClip had "numerically higher" mortality and heart failure hospitalization rates during the 12 months after the procedure compared with a control group, according to the report. Tippen, the Abbott spokesperson, didn't respond to a request for comment on those findings.
The committee voted 14-0 that TriClip was safe for its intended use. The panel voted 12-2 that the device was effective, and it voted 13-1 that the benefits of TriClip outweighed the risks.
The committee member to whom the database attributes the most money from Abbott, Paul Hauptman, cast one of the votes against the device on effectiveness and the sole vote against the device on the bottom-line question of its risks versus benefits.
Hauptman said during the meeting that the question of safety was "very, very clear" but added: "I just felt the need to pull back a little bit on unbridled enthusiasm." Who will benefit from the device, he said, "needs better definition."
Hauptman, dean of the University of Nevada-Reno School of Medicine, is connected to 268 general payments from Abbott totaling about $197,000 in the Open Payments database. Some payments are listed as going to an entity called Keswick Cardiovascular.
Hauptman said in an email that he followed FDA guidance and added, "My impartiality speaks for itself based on my vote and critical comments."
Some committee members voted in favor of the device despite concerns.
Marc Katz, chief of the Division of Cardiothoracic Surgery at the Medical University of South Carolina, is linked to 77 general payments totaling about $53,000 from Abbott and worked on research supported by about $10,000 from the company, according to Open Payments.
"I voted yes for safety, no for effectiveness, but then caved and voted yes for the benefits outweighing the risks," he said in the meeting.
In an email, he said of his Abbott payments: "All was disclosed and reviewed by the FDA." He said that he "can be impartial" and that he "openly expressed … concerns about the treatment."
Mitchell Krucoff, a professor at Duke University School of Medicine, is connected to 100 general payments totaling about $105,000. Some went to a third party, HPIC Consulting. He also worked on research supported by about $51,000 from Abbott, according to Open Payments.
He said during the meeting that he voted in favor of the device on all three questions and added that doctors have "a lot to learn" once it's on the market. For instance: By using the device to treat patients now, "do we set people up for catastrophes later?"
In an email, Krucoff said he completed a "very thorough conflict of interest screening by FDA for this panel," which focused not only on Abbott but also on "any work done/payments received from any other manufacturer with devices in this space."
John Hirshfeld Jr., an emeritus professor of medicine at the University of Pennsylvania, is linked by the database to six general payments from Abbott totaling $6,000. Two of the payments linked to him went to a nonprofit, the Cardiovascular Research Foundation, according to the database. He voted yes on all three questions about TriClip but said at the meeting that he "would have liked to have seen more rigorous data to support efficacy."
In an email, Hirshfeld said he disclosed the payments to the FDA. The agency did not deem him to have a conflict because he had no stake in Abbott's success and his involvement with the company had ended, he said. Through the conflict-of-interest screening process, he said, he had been excluded from prior advisory panels.
Federal and state regulators aren't doing enough to stop the growing problem of rogue health insurance brokers making unauthorized policy switches for Affordable Care Act policyholders, say consumers, agents, nonprofit enrollee assistance groups, and other insurance experts.
"We think it's urgent and it requires a lot more attention and resources," said Jennifer Sullivan, director of health coverage access for the Center on Budget and Policy Priorities.
The Centers for Medicare & Medicaid Services, which oversees the ACA, "has acknowledged the issue," said former Oklahoma insurance commissioner John Doak. "But it appears their response is inadequate."
The reactions follow a KFF Health News article outlining how licensed brokers' easy access to policyholder information on healthcare.gov has led unscrupulous agents to switch people's policies without express permission. Those agents can then take the commission that comes with signing a new customer. Dozens of people and insurance brokers responded to the earlier report recounting similar situations.
Some switched policyholders end up in plans that don't include their doctors or the medications they regularly take, or come with higher deductibles than their original coverage choice. If their income or eligibility for premium tax credits is misrepresented, some people end up owing back taxes.
Agents whose clients have been affected say the switches ramped up last year and are continuing into 2024, although quantifying the problem continues to be difficult. The problem seems concentrated on the federal healthcare.gov website, which is the marketplace where people in 32 states buy ACA plans, which are also known as Obamacare. CMS declined to provide the number of complaints that have been filed.
Even so, CMS representatives said during a December committee meeting of the National Association of Insurance Commissioners that they were "acutely aware" of the problem and were working on solutions.
A similar NAIC gathering was held in March. During those meetings, state regulators urged CMS officials to look for unauthorized switches, rather than reacting only to filed complaints. State regulators also want the agency to tell them sooner about agents or brokers under investigation, and to be provided with the number of affected consumers in their regions.
In an April 4 written statement to KFF Health News, Jeff Wu, acting director of CMS' Center for Consumer Information & Insurance Oversight, pointed to the agency's sharp prohibition on agents enrolling people or changing their plans without getting written or recorded consent, and said his team is "analyzing potential additional system controls to block unauthorized or fraudulent activity."
It is also working with state regulators and large broker agencies, Wu wrote, to identify "the most effective ways to root out bad actors." He also said more agents and brokers are being suspended or terminated from healthcare.gov.
Wu did not provide, however, a tally of just how many have been sanctioned.
Low-income consumers are often targeted, possibly because they qualify for zero-premium plans, meaning they might not know they've been switched or enrolled because they aren't paying a monthly bill.
Also, rules took effect in 2022 that allow low-income residents to enroll at any time of the year, not just during the annual open enrollment period. While the change was meant to help people who most need to access coverage, it has had the unintended effect of creating an opportunity for this scheme to ramp up.
"There have been bad apples out there signing people up and capturing the commissions to do so for a while, but it's exacerbated in the last couple of years, turning it from a few isolated incidents to something more common," said Sabrina Corlette, co-director of the Center on Health Insurance Reforms at Georgetown University.
Many victims don't know they've been switched until they try to use their plans — either because agents changed the policy without talking to them or because the consumer unknowingly enrolled by responding to online advertisements promising gift cards, government subsidies, or free health insurance.
The challenge now is how federal regulators and their counterparts in the states can thwart the activity without diminishing enrollment — a top priority for the marketplace. In fact, Obamacare's record-breaking enrollment figures are being touted prominently in President Joe Biden's reelection campaign.
Thwarting the switches "really comes down to oversight and enforcement," Corlette said. "As soon as regulators identify someone who is engaged in unauthorized plan-switching or enrollment, they need to cut them off immediately."
That isn't simple.
For starters, consumers or their agents must report suspected problems to state and federal regulators before investigations are launched.
Such investigations can take weeks and states generally don't have access to complaints until federal investigators finish an inquiry, state regulators complained during the NAIC meetings.
Doak attended the December meeting, where he urged federal regulators to look for patterns that might indicate unauthorized switching — such as policyholders' coverage being changed multiple times in a short period — and then quickly initiate follow-up with the consumer.
"All regulators have a duty to get on top of this issue and protect the most vulnerable consumers from unknowingly having their policies moved or their information mistreated," Doak told KFF Health News. He is now executive vice president of government affairs for Insurance Care Direct, a health insurance brokerage.
Being more proactive requires funding.
Wu said the agency's administrative budget has remained nearly flat for 13 years even as enrollment has grown sharply in the ACA and the other health programs it oversees.
And the complaint process itself can be cumbersome because it can involve different state or federal agencies lacking coordination.
Even after complaints are filed, state or federal officials follow up directly with the consumer, who might have limited English proficiency, lack an email address, or simply not answer their phone — which can stall or stop a resolution, said Katie Roders Turner, executive director of the Family Healthcare Foundation, a Tampa Bay, Florida, nonprofit that helps people enroll or deal with problems that arise with their plans.
Suggested improvements include creating a central form or portal for complaints and beefing up safeguards on the healthcare.gov site to prevent such unauthorized activity in the first place.
Currently, licensed agents need only a name, date of birth, and state of residence to access policyholder information and make changes. That information is easy to obtain.
States that run their own marketplaces — there are 18 and the District of Columbia — often require more information, such as a one-time passcode sent to the consumer, who then gives it to their chosen agent.
In the meantime, the frustration is increasing.
Lauren Phillips, a sales agent in Georgia, said she reached out to an agent in Florida who was switching one of her clients, asking her to stop. When it happened again to the same client, she reported it to regulators.
"Their solution was for me to just watch the policy and fix it if it happens again, which is not a viable solution, "Phillips said.
Recently, after noticing the client's policy had been switched again, she reported it and changed it back. When she checked two mornings later, the policy had been terminated.
"Now my client has no insurance at all," Phillips said. "They say they are working on solutions. But here we are in the fourth month of the year and agents and consumers are still suffering at the hands of these terrible agents."
The cost of insulin in the United States has risen considerably in recent years, with some estimates finding that Americans have paid around 10 times as much for the drug as people in other developed countries.
But recent changes by the federal government and drug manufacturers have started to drive insulin prices down, something President Joe Biden often mentions at campaign events.
Biden told the crowd at a March 19 campaign reception in Reno, Nevada, that he's fought for years to allow Medicare to negotiate with drug companies.
"How many of you know someone who needs insulin?" Biden asked. "OK, well, guess what? It was costing 400 bucks a month on average. It now costs $35 a month."
We've heard Biden make this point several times on the campaign trail — in other instances, he has said beneficiaries were paying "as much as" $400 a month — so we wanted to look into it.
The Inflation Reduction Act, which Biden signed in 2022, caps out-of-pocket insulin costs at $35 a month for Medicare enrollees. The cap took effect in 2023. In response, three drug manufacturers said they planned to reduce the price of insulin to $35 through price caps or savings programs.
The legislation also helped patients by clarifying how much they would have to pay for insulin and other drugs.
But Biden overstated the average monthly cost that Medicare beneficiaries were paying before the law.
One government estimate for out-of-pocket insulin costs found that people with diabetes enrolled in Medicare or private insurance paid an average of $452 a year — not a month, as Biden said. That's according to a December 2022 report by the Department of Health and Human Services using 2019 data. Uninsured users, however, paid more than twice as much on average for the drug, or about $996 annually.
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About Half of US Insulin Users Are on Medicare
More than 37 million Americans have diabetes, and more than 7 million of them need insulin to control their blood sugar levels and prevent dangerous complications. Of the Americans who take the drug, about 52% are on Medicare.
It's unlikely that many Medicare enrollees were paying the $400 out-of-pocket monthly average Biden referred to, though it could be on target for some people, especially if they're uninsured, drug pricing experts told us.
"It would be more accurate to say that it could cost people on Medicare over $400 for a month of insulin, but the average cost would have been quite a bit lower than $400 on Medicare," said Stacie Dusetzina, a health policy professor at Vanderbilt University School of Medicine.
Medicare Part D, also called the Medicare prescription drug benefit, helps beneficiaries pay for self-administered prescriptions. The benefit has several phases, including a deductible, an initial coverage phase, a coverage gap phase, and catastrophic coverage. What Medicare beneficiaries pay for their prescriptions often depends on which phase they're in.
"It is confusing, because the amount that a person was supposed to pay jumps around a lot in the Part D benefit," Dusetzina said. For example, she said, Medicare beneficiaries would be more likely to pay $400 a month for insulin during months when they hadn't yet met their deductible.
Mariana Socal, an associate scientist at Johns Hopkins Bloomberg School of Public Health, said it's also difficult to estimate insulin's precise cost under Medicare because individual prices hinge on other factors, such as how many other prescription medications patients take.
"Because the Medicare program has multiple instances where the patient is required to pay a coinsurance (percentage of the drug's cost) to get their drug, it is very likely that patients were paying much more than $35 per month, on average, before the cap established by the Inflation Reduction Act went into effect," Socal wrote in an email.
There are different ways to administer insulin, including through a pump, inhaler, or pen injector filled with the medicine.
In a 2023 report, HHS researchers estimated that about 37% of insulin fills for Medicare enrollees cost patients more than $35, and 24% of fills exceeded $70. Nationally, the average out-of-pocket cost for insulin was $58 per fill, typically for a 30-day supply, the report found. Patients with private insurance or Medicare paid about $63 per fill, on average.
For people with employer-sponsored insurance, the average monthly out-of-pocket spending on insulin in 2019 was $82, according to a report published in October 2021 by the Health Care Cost Institute, a nonprofit that studies health care prices. The study found that the majority of patients were spending an average of $35 a month, or lower, on the drug. But among the "8.7% of individuals in the highest spending category," the median monthly out-of-pocket spending on insulin was about $315, the study said.
Our Ruling
Biden said Medicare beneficiaries used to pay an average of $400 per month for insulin and are now paying $35 per month.
The Inflation Reduction Act capped the monthly price of insulin at $35 for Medicare enrollees, starting in 2023. The change built in price predictability and helped insulin users save hundreds of dollars a year.
However, most Medicare enrollees were not paying a monthly average of $400 before these changes, according to experts and government data. Costs vary, so it is possible some people paid that much in a given month, depending on their coverage phase and dosage.
Research has shown that patients with private insurance or Medicare often paid more than $35 a month for their insulin, sometimes much more, but not as high as the $400 average Biden cited.
We rate Biden's statement Half True.
PolitiFact copy chief Matthew Crowley contributed to this report.
For Cindy Westman, $30 buys a week's worth of gas to drive to medical appointments and run errands.
It's also how much she spent on her monthly internet bill before the federal Affordable Connectivity Program stepped in and covered her payments.
"When you have low income and you are living on disability and your daughter's disabled, every dollar counts," said Westman, who lives in rural Illinois.
More than 23 million low-income households — urban, suburban, rural, and tribal — are enrolled in the federal discount program Congress created in 2021 to bridge the nation's digital connectivity gap. The program has provided $30 monthly subsidies for internet bills or $75 discounts in tribal and high-cost areas.
But the program is expected to run out of money in April or May, according to the Federal Communications Commission. In January, FCC Chairwoman Jessica Rosenworcel asked Congress to allocate $6 billion to keep the program running until the end of 2024. She said the subsidy gives Americans the "internet service they need to fully participate in modern life."
The importance of high-speed internet was seared into the American psyche by scenes of children sitting in parking lots and outside fast-food restaurants to attend school online during the COVID-19 pandemic. During that same period, health care providers and patients like Westman say, being connected also became a vital part of today's health care delivery system.
Westman said her internet connection has become so important to her access to health care she would sell "anything that I own" to stay connected.
Westman, 43, lives in the small town of Eureka, Illinois, and has been diagnosed with genetic and immune system disorders. Her 12-year-old daughter has cerebral palsy and autism.
She steered the $30 saved on her internet toward taking care of her daughter, paying for things such as driving 30 minutes west to Peoria, Illinois, for two physical therapy appointments each week. And with an internet connection, Westman can access online medical records, and whenever possible she uses telehealth appointments to avoid the hour-plus drive to specialty care.
"It's essential for me to keep the internet going no matter what," Westman said.
Expanding telehealth is a common reason health care providers around the U.S. — in states such as Massachusetts and Arkansas — joined efforts to sign their patients up for the federal discount program.
"This is an issue that has real impacts on health outcomes," said Alister Martin, an emergency medicine physician at Massachusetts General Hospital. Martin realized at the height of the pandemic that patients with means were using telehealth to access covid care. But those seeking in-person care during his ER shifts tended to be lower-income, and often people of color.
"They have no other choice," Martin said. "But they probably don't need to be in the ER action." Martin became a White House fellow and later created a nonprofit that he said has helped 1,154 patients at health centers in Boston and Houston enroll in the discount program.
At the University of Arkansas for Medical Sciences, a federal grant was used to conduct dozens of outreach events and help patients enroll, said Joseph Sanford, an anesthesiologist and the director of the system's Institute for Digital Health & Innovation.
"We believe that telehealth is the great democratization to access to care," Sanford said. New enrollment in the discount program halted nationwide last month.
Leading up to the enrollment halt, Sen. Peter Welch (D-Vt.) led a bipartisan effort to introduce the Affordable Connectivity Program Extension Act in January. The group requested $7 billion — more than the FCC's ask — to keep the program funded. "Affordability is everything," Welch said.
In December, federal regulators surveyed program recipients and found that 22% reported no internet service before, and 72% said they used their ACP-subsidized internet to "schedule or attend healthcare appointments."
Estimates of how many low-income U.S. households qualify for the program vary, but experts agree that only about half of the roughly 50 million eligible households have signed on.
"A big barrier for this program generally was people don't know about it," said Brian Whitacre, a professor and the Neustadt chair in the Department of Agricultural Economics at Oklahoma State University.
Whitacre and others said rural households should be signing up at even higher rates than urban ones because a higher percentage of them are eligible.
Yet, people found signing up for the program laborious. Enrollment was a two-step process. Applicants were required to get approved by the federal government then work with an internet service provider that would apply the discount. The government application was online — hard to get to if you didn't yet have internet service — though applicants could try to find a way to download a version, print it, and submit the application by mail.
When Frances Goli, the broadband project manager for the Shoshone-Bannock Tribes in Idaho, began enrolling tribal and community members at the Fort Hall Reservation last year, she found that many residents did not know about the program — even though it had been approved more than a year earlier.
Goli and Amber Hastings, an AmeriCorps member with the University of Idaho Extension Digital Economy Program, spent hours helping residents through the arduous process of finding the proper tribal documentation required to receive the larger $75 discount for those living on tribal lands.
"That was one of the biggest hurdles," Goli said. "They're getting denied and saying, come back with a better document. And that is just frustrating for our community members."
Of the more than 200 households Goli and Hastings aided, about 40% had not had internet before.
In the tribal lands of Oklahoma, said Sachin Gupta, director of government business and economic development at internet service provider Centranet, years ago the funding may not have mattered.
"But then covid hit," Gupta said. "The stories I have heard."
Elders, he said, reportedly "died of entirely preventable causes" such as high blood pressure and diabetes because they feared covid in the clinics.
"It's really important to establish connectivity," Gupta said. The end of the discounts will "take a toll."
DENVER — In February, Norma Brambila's teenage daughter wrote her a letter she now carries in her purse. It is a drawing of a rose, and a note encouraging Brambila to "keep fighting" her sickness and reminding her she'd someday join her family in heaven.
Brambila, a community organizer who emigrated from Mexico a quarter-century ago, had only a sinus infection, but her children had never seen her so ill. "I was in bed for four days," she said.
Lacking insurance, Brambila had avoided seeking care, hoping garlic and cinnamon would do the trick. But when she felt she could no longer breathe, she went to an emergency room. The $365 bill — enough to cover a week of groceries for her family — was more than she could afford, pushing her into debt. It also affected another decision she'd been weighing: whether to go to Mexico for surgery to remove the growth in her abdomen that she said is as big as a papaya.
Brambila lives in a southwestern Denver neighborhood called Westwood, a largely Hispanic, low-income community where many residents are immigrants. Westwood is also in a ZIP code, 80219, with some of the highest levels of medical debt in Colorado.
More than 1 in 5 adults there have historically had unpaid medical bills on their credit reports, more in line with West Virginia than the rest of Colorado, according to 2022 credit data analyzed by the nonprofit Urban Institute.
The area's struggles reflect a paradox about Colorado. The state's overall medical debt burden is lower than most. But racial and ethnic disparities are wider.
The gap between the debt burden in ZIP codes where residents are primarily Hispanic and/or non-white and ZIP codes that are primarily non-Hispanic white is twice what it is nationally. (Hispanics can be of any race or combination of races.)
Medical debt in Colorado is also concentrated in ZIP codes with relatively high shares of immigrants, many of whom are from Mexico. The Urban Institute found that 19% of adults in these places had medical debt on their credit reports, compared with 11% in communities with fewer immigrants.
Nationwide, about 100 million people have some form of health care debt, according to a KFF Health News-NPR investigation. This includes not only unpaid bills that end up in collections, but also those being paid off through installment plans, credit cards, or other loans.
Racial and ethnic gaps in medical debt exist nearly everywhere, data shows. But Colorado's divide — on par with South Carolina's, according to the Urban Institute data — exists even though the state has some of the most extensive medical debt protections in the country.
The gap threatens to deepen long-standing inequalities, say patient and consumer advocates. And it underscores the need for more action to address medical debt.
"It exacerbates racial wealth gaps," said Berneta Haynes, a senior attorney with the nonprofit National Consumer Law Center who co-authored a report on medical debt and racial disparities. Haynes said too many Colorado residents, especially residents of color, are still caught in a vicious cycle in which they forgo medical care to avoid bills, leading to worse health and more debt.
Brambila said she has seen this cycle all too often around Westwood in her work as a community organizer. "I really would love to help people to pay their medical bills," she said.
Health or Debt?
Roxana Burciaga, who grew up in Westwood and works at Mi Casa Resource Center there, said she hears questions at least once a week about how to pay for medical care.
Medical debt is a "big, big, big topic in our community," she said. People don't understand what their insurance actually covers or can't get appointments for preventive care that suit their work schedules, she said.
Many, like Brambila, skip preventive care to avoid the bills and end up in the emergency room.
Doctors and nurses say they see the strains, as well.
Amber Koch-Laking, a family physician at Denver Health's Westwood Family Health Center, part of the city's public health system, said finances often come up in conversations with patients. Many patients try to get telehealth appointments to avoid the cost of going in person.
Adding to the crunch is Medicaid "unwinding", the process of states reexamining post-pandemic eligibility for health coverage for low-income people, Koch-Laking said. "They say, ‘Oh, I'm losing my Medicaid in three weeks, can you take care of these seven things without a visit?' Or like, ‘Can we just do it over the portal, because I can't afford it?'"
Looking for the Right Fix
Colorado has taken steps to protect patients from medical debt, including expanding Medicaid coverage through the 2010 Affordable Care Act. More recently, state leaders required hospitals to expand financial assistance for low-income patients and barred all medical debts from consumers' credit reports.
But the complexities of many assistance programs remain a major barrier for immigrants and others with limited English, said Julissa Soto, a Denver-based health equity consultant focused on Latino Coloradans.
Many patients, for example, may not know they can seek help with medical bills from the state or community nonprofits.
"The health care system is a puzzle. You better learn how to play with puzzles," said Soto, who said she was sent to collections for medical bills when she first immigrated to the U.S. from Mexico. "Many hospitals also have funding to help out with your debt. You just have to get to the right person, because it seems that nobody wants to let us know that those programs exist."
She said simplifying bills would go a long way to helping many patients.
Several states, including Oregon, Maryland, and Illinois, have tried to make it easier for people to access hospital financial aid by requiring hospitals to proactively screen patients.
Patient and consumer advocates say Colorado could also further restrict aggressive debt collection, such as lawsuits, which remain common in the state.
New York, for example, banned wage garnishment after finding that the practice disproportionately affected low-income communities. Research there also showed that medical debt burden was falling about twice as hard on communities of color as it was on non-Hispanic white communities.
Elisabeth Benjamin, a lawyer with the Community Service Society of New York, said hospitals were garnishing the wages of people working at Walmart and Taco Bell.
Maryland enacted limits on debt collection lawsuits after advocates found that patients living in predominantly minority neighborhoods were being disproportionately targeted. Even in wealthy counties, "the pockets that are being pursued are majority Latino neighborhoods," said Marceline White, executive director of the advocacy group Economic Action Maryland.
White's group helped pass a law requiring hospitals to pay back low-income patients and avoid the scenario she was seeing, in which hospitals were "suing patients who should have gotten free care."
Meanwhile, some consumer advocates say existing protections aren't working well enough.
State data shows patients who received financial assistance were primarily white. And, though it's unclear why, 42% of patients who may have been eligible were not fully screened by hospitals for financial assistance.
"What is clear is that a lot of people are not making it through," said Bethany Pray, deputy director of the Colorado Center on Law and Policy, a Denver-based legal aid group that pushed for the discounted care legislation.
Within the state's immigrant communities, medical debt — and the fear of debt — continues to take a heavy toll.
"What we've heard from our constituents is that medical debt sometimes is the difference between them being housed and them being unhoused," said Denver City Council member Shontel Lewis. Her district includes the 80216 ZIP code, another place north of the city center that is saddled with widespread medical debt.
Paola Becerra is an immigrant living in the U.S. without legal permission who was pregnant when she was bused to Denver from a Texas shelter a few months ago.
She said she has skipped prenatal care visits because she couldn't afford the $50 copays. She has emergency health coverage through Medicaid, but it doesn't cover preventive visits, and she has already racked up about $1,600 in bills.
"I didn't know that I was going to arrive pregnant," said Becerra, who thought she could no longer conceive when she left Colombia. "You have to give up your health. Either I pay the rent, or I pay the hospital."
For Rocio Leal, a community organizer in Boulder, medical debt has become a defining feature of her life.
Despite the health insurance she had through her job, Leal ended up with high-interest payday loans to pay for healthy births, wage garnishment, prenatal appointments she missed to save money, and a "ruined" credit score, which limited her housing options.
Leal recalled times she thought they'd be evicted and other times the electricity was cut off. "It's not like we're avoiding and don't want to pay. It's just sometimes we don't have an option to pay," she said.
Leal said the worst times are behind her now. She's in a home she loves, where neighbors bring cakes over to thank her son for shoveling the snow off their driveway.
Her children are doing well. One daughter got a perfect GPA for the second semester in a row. Another is playing violin in the school orchestra. Her third daughter attends art club. And her son was recently accepted to college for biomedical engineering. They are covered by Medicaid, which has removed the uncertainty around big medical bills.
But medical debt still haunts Leal, who has Type 2 diabetes.
When she was referred to Boulder Medical Center to get her eyes checked after the diabetes diagnosis, she said she was told there was a red flag by her name. The last time she'd interacted with the medical center was about a dozen years earlier, when she'd been unable to pay pediatrician bills.
"I was in the process of moving and then my wages were garnished," she recalled. "I just was like, ‘What else do I owe?'"
Heart pounding, she hung up the phone.
KFF Health News senior correspondent Noam N. Levey contributed to this report.
Patients hurl verbal abuse at Michelle Ravera every day in the emergency room. Physical violence is less common, she said, but has become a growing threat.
Ravera, an ER nurse at Sutter Medical Center in Sacramento, recalled an incident in which an agitated patient wanted to leave. "Without any warning he just reached up, grabbed my glasses, and punched me in the face," said Ravera, 54. "And then he was getting ready to attack another patient in the room." Ravera and hospital security guards subdued the patient so he couldn't hurt anyone else.
Violence against health care workers is on the rise, including in the ER, where tensions can run high as staff juggle multiple urgent tasks. Covid-19 only made things worse: With routine care harder to come by, many patients ended up in the ER with serious diseases — and brimming with frustrations.
In California, simple assault against workers inside an ER is considered the same as simple assault against almost anyone else, and carries a maximum punishment of a $1,000 fine and six months in jail. In contrast, simple assault against emergency medical workers in the field, such as an EMT responding to a 911 call, carries maximum penalties of a $2,000 fine and a year in jail. Simple assault does not involve the use of a deadly weapon or the intention to inflict serious bodily injury.
State Assembly member Freddie Rodriguez, who worked as an EMT, has authored a bill to make the punishments consistent: a $2,000 fine and one year in jail for simple assault on any on-the-job emergency health care worker, whether in the field or an ER. The measure would also eliminate the discrepancy for simple battery.
Patients and family members are assaulting staff and "doing things they shouldn't be doing to the people that are there to take care of your loved ones," said Rodriguez, a Democrat from Pomona. The bill passed the state Assembly unanimously in January and awaits consideration in the Senate.
Rodriguez has introduced similar measures twice before. Then-Gov. Jerry Brown vetoed one in 2015, saying he doubted a longer jail sentence would deter violence. "We need to find more creative ways to protect the safety of these critical workers," he wrote in his veto message. The 2019 bill died in the state Senate.
Rodriguez said ERs have become more dangerous for health care workers since then and that "there has to be accountability" for violent behavior. Opponents fear stiffer penalties would be levied disproportionately on patients of color or those with developmental disabilities. They also point out that violent patients can already face penalties under existing assault and battery laws.
Data from the California Division of Occupational Safety and Health shows that reported attacks on ER workers by patients, visitors, and strangers jumped about 25% from 2018 to 2023, from 2,587 to 3,238. The rate of attacks per 100,000 ER visits also increased.
Punching, kicking, pushing, and similar aggression accounted for most of the attacks. Only a small number included weapons.
These numbers are likely an undercount, said Al'ai Alvarez, an ER doctor and clinical associate professor at Stanford University's Department of Emergency Medicine. Many hospital staffers don't fill out workplace violence reports because they don't have time or feel nothing will come of it, he said.
Ravera remembers when her community rallied around health care workers at the start of the pandemic, acting respectfully and bringing food and extra N95 masks to workers.
"Then something just switched," she said. "The patients became angrier and more aggressive."
Violence can contribute to burnout and drive workers to quit — or worse, said Alvarez, who has lost colleagues to suicide, and thinks burnout was a key factor. "The cost of burnout is more than just loss of productivity," he said. "It's loss of human beings that also had the potential to take care of many more people."
The National Center for Health Workforce Analysis projects California will experience an 18% shortage of all types of nurses in 2035, the third worst in the country.
Federal legislation called the Safety From Violence for Healthcare Employees Act would set sentences of up to 10 years for assault against a health care worker, not limited to emergency workers, and up to 20 years in cases involving dangerous weapons or bodily injury. Though it was introduced in 2023, it has not yet had a committee hearing.
Opponents of the California bill, which include ACLU California Action, the California Public Defenders Association, and advocates for people with autism, argue it wouldn't deter attacks — and would unfairly target certain patients.
"There's no evidence to suggest that increased penalties are going to meaningfully address this conduct," said Eric Henderson, a legislative advocate for ACLU California Action. "Most importantly, there are already laws on the books to address assaultive conduct."
Beth Burt, executive director of the Autism Society Inland Empire, said the measure doesn't take into account the special needs of people with autism and other developmental disorders.
The smells, lights, textures, and crowds in the ER can overstimulate a person with autism, she said. When that happens, they can struggle to articulate their feelings, which can result in a violent outburst, "whether it's a 9-year-old or a 29-year-old," Burt said.
She worries that hospital staff may misunderstand these reactions, and involve law enforcement when it's not necessary. As "a parent, it is still my worst fear" that she'll get a phone call to inform her that her adult son with autism has been arrested, she said.
Burt would rather the state prioritize de-escalation programs over penalties, such as the training programs for first responders she helped create through the Autism Society Inland Empire. After implementing the training, hospital administrators asked Burt to share some strategies with them, she said. Hospital security staffers who do not want to use physical restraints on autistic patients have also sought her advice, she said.
Supporters of the bill, including health care and law enforcement groups, counter that people with mental health conditions or autism who are charged with assault in an ER may be eligible for existing programs that provide mental health treatment in lieu of a criminal sentence.
Stephanie Jensen, an ER nurse and head of governmental affairs for the Emergency Nurses Association, California State Council, said her organization is simply arguing for equity. "If you punch me in the hospital, it's the same as if you punch me on the street," she said.
If lawmakers don't act, she warned, there won't be enough workers for the patients who need them.
"It's hard to keep those human resources accessible when it just seems like you're showing up to get beat up every day," Jensen said. "The emergency department is taking it on the chin, literally and figuratively."
The loss of a trusted doctor is never easy, and it's an experience that is increasingly common.
This article was published on Tuesday, April 2, 2024 in KFF Health News.
First, her favorite doctor in Providence, Rhode Island, retired. Then her other doctor at a health center a few miles away left the practice. Now, Piedad Fred has developed a new chronic condition: distrust in the American medical system.
"I don't know," she said, her eyes filling with tears. "To go to a doctor that doesn't know who you are? That doesn't know what allergies you have, the medicines that make you feel bad? It's difficult."
At 71, Fred has never been vaccinated against covid-19. She no longer gets an annual flu shot. And she hasn't considered whether to be vaccinated against respiratory syncytial virus, or RSV, even though her age and an asthma condition put her at higher risk of severe infection.
"It's not that I don't believe in vaccines," Fred, a Colombian immigrant, said in Spanish at her home last fall. "It's just that I don't have faith in doctors."
The loss of a trusted doctor is never easy, and it's an experience that is increasingly common.
The stress of the pandemic drove a lot of health care workers to retire or quit. Now, a nationwide shortage of doctors and others who provide primary care is making it hard to find replacements. And as patients are shuffled from one provider to the next, it's eroding their trust in the health system.
The American Medical Association's president, Jesse Ehrenfeld, recently called the physician shortage a "public health crisis."
In Fred's home state of Rhode Island, the percentage of people without a regular source of routine health care increased from 2021 to 2022, though the state's residents still do better than most Americans.
Hispanic residents and those with less than a high school education are less likely to have a source of routine health care, according to the nonprofit organization Rhode Island Foundation.
The community health centers known as federally qualified health centers, or FQHCs, are the safety net of last resort, serving the uninsured, the underinsured, and other vulnerable people. There are more than 1,400 community health centers nationwide, and about two-thirds of them lost between 5% and a quarter of their workforce during a six-month period in 2022, according to a report by the National Association of Community Health Centers.
Another 15% of FQHCs reported losing between a quarter and half of their staff. And it's not just doctors: The most severe shortage, the survey found, was among nurses.
In a domino effect, the shortage of clinicians has placed additional burdens on support staff members such as medical assistants and other unlicensed workers.
Their extra tasks include "sterilizing equipment, keeping more logs, keeping more paperwork, working with larger patient loads," said Jesse Martin, executive vice president of District 1199 NE of the Service Employees International Union, which represents 29,000 health care workers in Connecticut and Rhode Island.
"When you add that work to the same eight hours' worth of a day's work you can't get everything done," Martin said.
Last October, scores of SEIU members who work at Providence Community Health Centers, Rhode Island's largest FQHC, held an informational picket outside the clinics, demanding improvements in staffing, work schedules, and wages.
The marketing and communications director for PCHC, Brett Davey, declined to comment.
Staff discontent has rippled through community health care centers across the country. In Chicago, workers at three health clinics held a two-day strike in November, demanding higher pay, better benefits, and a smaller workload.
Then just before Thanksgiving at Unity Health Care, the largest federally qualified health center in Washington, D.C., doctors and other medical providers voted to unionize. They said they were being pressed to prioritize patient volume over quality of care, leading to job burnout and more staff turnover.
The staffing shortages come as community health centers are caring for more patients. The number of people served by the centers between 2015 and 2022 increased by 24% nationally, and by 32.6% in Rhode Island, according to the Rhode Island Health Center Association, or RIHCA.
"As private practices close or get smaller, we are seeing patient demand go up at the health centers," said Elena Nicolella, RIHCA's president and CEO. "Now with the workforce challenges, it's very difficult to meet that patient demand."
In Rhode Island, community health centers in 2022 served about 1 in 5 residents, which is more than twice the national average of 1 in 11 people, according to RIHCA.
Job vacancy rates at Rhode Island's community health centers are 21% for physicians, 18% for physician assistants and nurse practitioners, and 10% for registered nurses, according to six of the state's eight health centers that responded to a survey conducted by RIHCA for The Public's Radio, NPR, and KFF Health News.
Pediatricians are also in short supply. Last year, 15 pediatricians left staff positions at the Rhode Island health centers, and seven of them have yet to be replaced.
These clinicians often want to give back to the community, she said, and are motivated to practice "a kind of medicine that is maybe less corporate," and through which they can they develop close relationships with patients and within multigenerational families.
So when workplace pressures make it harder for these clinicians to meet their patients' needs, they are more likely to burn out, Burdette said.
When a doctor quits or retires, Carla Martin, a pediatrician and an internist, often gets asked to help. The week before Thanksgiving, she was filling in at two urgent care clinics in Providence.
"We're seeing a lot of people coming in for things that are really primary care issues, not urgent care issues, just because it's really hard to get appointments," Martin said.
One patient recently visited urgent care asking for a refill of her asthma medication. "She said, ‘I ran out of my asthma medicine, I can't get a hold of my PCP for refill, I keep calling, I can't get through,'" Martin said.
Stories like that worry Christopher Koller, president of the Milbank Memorial Fund, a nonprofit philanthropy focused on health policy. "When people say, ‘I can't get an appointment with my doctor,' that means they don't have a usual source of care anymore," Koller said.
Koller points to research showing that having a consistent relationship with a doctor or other primary care clinician is associated with improvements in overall health and fewer emergency room visits.
When that relationship is broken, patients can lose trust in their health care providers.
That's how it felt to Piedad Fred, the Colombian immigrant who stopped getting vaccinated. Fred used to go to a community health center in Rhode Island, but then accessing care there began to frustrate her.
She described making repeated phone calls for a same-day appointment, only to be told that none were available and that she should try again tomorrow. After one visit, she said, one of her prescriptions never made it to the pharmacy.
And there was another time when she waited 40 minutes in the exam room to consult with a physician assistant — who then said she couldn't give her a cortisone shot for her knee, as her doctor used to do.
Fred said that she won't be going back.
So what will she do the next time she gets sick or injured and needs medical care?
"Well, I'll be going to a hospital," she said in Spanish.
But experts warn that more people crowding into hospital emergency rooms will only further strain the health system, and the people who work there.