KALISPELL, Mont. — On a cold February morning at the Flathead Warming Center, Tashya Evans waited for help with her Medicaid application as others at the shelter got ready for the day in this northwestern Montana city.

Evans said she lost Medicaid coverage in September because she hadn’t received paperwork after moving from Great Falls, Montana. She has had to forgo the blood pressure medication she can no longer pay for since losing coverage. She has also had to put off needed dental work.

“The teeth broke off. My gums hurt. There’s some times where I’m not feeling good, I don’t want to eat,” she said.

Evans is one of about 130,000 Montanans who have lost Medicaid coverage as the state reevaluates everyone’s eligibility following a pause in disenrollments during the covid-19 pandemic. About two-thirds of those who were kicked off state Medicaid rolls lost coverage for technical reasons, such as incorrectly filling out paperwork. That’s one of the highest procedural disenrollment rates in the nation, according to a KFF analysis.

Even unsheltered people like Evans are losing their coverage, despite state officials saying they would automatically renew people who should still qualify by using Social Security and disability data.

As other guests filtered out of the shelter that February morning, Evans sat down in a spare office with an application counselor from Greater Valley Health Clinic, which serves much of the homeless population here, and recounted her struggle to reenroll.

She said that she had asked for help at the state public assistance office, but that the staff didn’t have time to answer her questions about which forms she needed to fill out or to walk her through the paperwork. She tried the state’s help line, but couldn’t get through.

“You just get to the point where you’re like, ‘I’m frustrated right now. I just have other things that are more important, and let’s not deal with it,’” she said.

Evans has a job and spends her free time finding a place to sleep since she doesn’t have housing. Waiting on the phone most of the day isn’t feasible.

There’s no public data on how many unhoused people in Montana or nationwide have lost Medicaid, but homeless service providers and experts say it’s a big problem.

Those assisting unsheltered people who have lost coverage say they spend much of their time helping people contact the Montana Medicaid office. Sorting through paperwork mistakes is also a headache, said Crystal Baker, a case manager at HRDC, a homeless shelter in Bozeman.

“We’re getting mail that’s like, ‘Oh, this needs to be turned in by this date,’ and that’s already two weeks past. So, now we have to start the process all over again,” she said. “Now, they have to wait two to three months without insurance.”

Montana health officials told NPR and KFF Health News in a statement that they provided training to help homeless service agencies prepare their clients for redetermination.

Federal health officials have warned Montana and some other conservative states against disenrolling high rates of people for technicalities, also known as procedural disenrollment. They also warned states about unreasonable barriers to accessing help, such as long hold times on help lines. The Centers for Medicare & Medicaid Services said if states don’t reduce the rate of procedural disenrollments, the agency could force them to halt their redetermination process altogether. So far, CMS hasn’t taken that step.

Charlie Brereton, the director of the Montana health department, resisted calls from Democratic state lawmakers to pause the redetermination process. Redetermination ended in January, four months ahead of the federal deadline.

“I’m confident in our redetermination process,” Brereton told lawmakers in December. “I do believe that many of the Medicaid members who’ve been disenrolled were disenrolled correctly.

Health industry observers say that both liberal-leaning and conservative-leaning states are kicking homeless people off their rolls and that the redetermination process has been chaotic everywhere. Because of the barriers that unsheltered people face, it’s easy for them to fall through the cracks.

Margot Kushel, a physician and a homeless researcher at the University of California-San Francisco, said it may not seem like a big deal to fill out paperwork. But, she said, “put yourself in the position of an elder experiencing homelessness,” especially those without access to a computer, phone, or car.

If they still qualify, people can usually get their Medicaid coverage renewed — eventually — and it may reimburse patients retroactively for care received while they were unenrolled.

Kushel said being without Medicaid for any period can be particularly dangerous for people who are homeless. This population tends to have high rates of chronic health conditions.

“Being out of your asthma medicine for three days can be life-threatening. If you have high blood pressure and you suddenly stop your medicine, your blood pressure shoots up, and your risk of having a heart attack goes way up,” she said.

When people don’t understand why they’re losing coverage or how to get it back, that erodes their trust in the medical system, Kushel said.

Evans, the homeless woman, was able to get help with her application and is likely to regain coverage.

Agencies that serve unhoused people said it could take years to get everyone who lost coverage back on Medicaid. They worry that those who go without coverage will resort to using the emergency room rather than managing their health conditions proactively.

Baker, the case manager at the Bozeman shelter, set up several callbacks from the state Medicaid office for one client. The state needed to interview him to make sure he still qualified, but the state never called.

“He waited all day long. By the fifth time, it was so stressful for him, he just gave up,” she said.

That client ended up leaving the Bozeman area before Baker could convince him it was worth trying to regain Medicaid.

Baker worries his poor health will catch up with him before he decides to try again.

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

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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SACRAMENTO, Calif. — California state lawmakers this year are continuing their progressive tilt on health policy with dozens of proposals including a ban on a Froot Loops ingredient and free condoms for high schoolers.

As states increasingly fracture along partisan lines, California Democrats are stamping their supermajority on legislation that they will consider until they adjourn at the end of August. But the cost of these proposals will be a major factor given the enormity of the state’s deficit, currently estimated at between $38 billion and $73 billion.

Health Coverage

Lawmakers are again considering whether to create a government-run, single-payer health care system for all Californians. AB 2200 is Democratic Assembly member Ash Kalra’s second such attempt, after a similar bill failed in 2022. The price tag would be enormous, though proponents say there would also be related savings. The high potential cost left Assembly Speaker Robert Rivas and others skeptical it could become law while the state faces a deficit.

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AB 4 would require Covered California, the state’s health insurance exchange, to offer health insurance policies to people who are otherwise not able to obtain coverage because of their immigration status, to the extent it can under federal law. That could eventually lead to subsidized insurance premiums similar to those offered in Colorado and Washington.

Medical Debt

Health care providers and collection agencies would be barred from sharing patients’ medical debt with credit reporting agencies under SB 1061. The bill would also prohibit credit reporting agencies from accepting, storing, or sharing any such information without consumer consent. Last year, the Biden administration announced plans to develop federal rules barring unpaid medical bills from affecting patients’ credit scores. California would be the third state to remove medical bills from consumer credit reports.

Medi-Cal

related coverage California’s Expanded Health Coverage for Immigrants Collides With Medicaid Reviews Read More

The Medi-Cal program, which provides health care for low-income people, would be required to cover medically supportive food and nutrition starting July 1, 2026, under AB 1975. The bill builds on an existing but limited pilot program. The legislation says Californians of color could benefit from adequate food and nutrition to combat largely preventable chronic health conditions, and it’s one of 14 measures sought by the California Legislative Black Caucus as part of reparations for racial injustice.

More than 1.6 million California residents, disproportionately Latinos, have been kicked off Medi-Cal since the state resumed annual eligibility checks that were halted during the covid-19 pandemic. AB 2956 would have the state seek federal approval to slow those disenrollments by taking steps such as letting people 19 and older keep their coverage automatically for 12 months.

Violence Prevention

An increase in attacks on health workers is prompting lawmakers to consider boosting criminal penalties. 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. AB 977 would set the same maximum penalties for assaulting emergency health care workers on the job, whether they are in the field or an ER.

California could toughen penalties for interfering with reproductive health care services. Posting personal information or photographs of a patient or provider would be a felony if one of them is injured as a result. AB 2099 also boosts penalties for intimidation or obstruction.

related coverage California Takes Up White House Call to Toughen Gun Storage Rules Read More

Under SB 53, gun owners would have to lock up their weapons in state-approved safes or lockboxes where they would be inaccessible to anyone but the owner or another lawfully authorized user. Democratic Sen. Anthony Portantino, the bill’s author, says that would make it tougher for anyone, including children, to use guns to harm themselves or others or use the weapons to commit crimes. Critics say it would make it harder to access the weapon when it’s needed, such as to counter a home invasion. Relatedly, AB 2621 and AB 2917 address gun violence restraining orders.

Substance Use

The spike in drug overdoses has prompted several responses: AB 3073 would require the state’s public health department to partner with local public health agencies, wastewater treatment facilities, and others to pilot wastewater testing for traces of dangerous drugs in an effort to pinpoint drug hot spots and identify new drugs. AB 1976 would require workplace first-aid kits to include naloxone nasal spray, which can reverse opioid overdoses. And senators have proposed at least nine bills aimed at curbing overdose deaths, particularly from the deadly synthetic opioid fentanyl.

Youth Welfare

Under AB 2229, backed by a “Know Your Period” campaign, school districts’ sex education curricula would have to include menstrual health. There was no registered opposition.

Public schools would have to make free condoms available to all pupils in grades nine to 12 under SB 954, which would help prevent unwanted pregnancies and sexually transmitted infections, according to the author, Democratic Sen. Caroline Menjivar. Democratic Gov. Gavin Newsom vetoed a similar bill last year.

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Reality show star Paris Hilton is backing a bipartisan bill to require more reporting on the treatment of youth in state-licensed short-term residential therapeutic programs. SB 1043 would require the state Department of Social Services to post information on the use of restraints and seclusion rooms on a public dashboard.

California would expand its regulation of hemp products, which have become increasingly popular among youths as a way to bypass the state’s adults-only restrictions on legal cannabis. AB 2223 would build on a 2021 law that Assembly member Cecilia Aguiar-Curry said in hindsight didn’t go far enough.

Public schools would, under AB 2316, generally be barred from providing food containing red dye 40, titanium dioxide, and other potentially harmful substances, which are currently used in products including Froot Loops and Flamin’ Hot Cheetos. It’s Democratic Assembly member Jesse Gabriel’s follow-up to his legislation last year that attempted to ban a chemical used in Skittles.

Women’s Health

AB 2515 would ban the sale of menstrual products with intentionally added PFAS, also known as “forever chemicals.” PFAS, short for perfluoroalkyl and polyfluoroalkyl substances, have been linked to serious health problems. Newsom vetoed a previous attempt.

related coverage Amid Lack of Accountability for Bias in Maternity Care, a California Family Seeks Justice Read More

Public grade schools and community colleges would, under AB 2901, have to provide 14 weeks of paid leave for pregnancies, miscarriages, childbirth, termination of pregnancies, or recovery. Newsom vetoed a similar bill in 2019.

AB 2319 would improve enforcement of a 2019 law aimed at reducing the disproportionate rate of maternal mortality among Black women and other pregnant women of color.

Social Media

Social media companies could face substantial penalties if they don’t do enough to protect children, under AB 3172. The measure would allow financial damages of up to $1 million for each child under age 18 who proves in court they were harmed, or three times the amount of the child’s actual damages. The industry opposes the bill, calling it harmful censorship.

Cyberbullies could face civil liabilities up to $75,000 under SB 1504, and those damages could be sought by anyone. Under current law, damages are capped at $7,500 and may be pursued only by the state attorney general.

Wellness

Bosses could be fined for repeatedly contacting employees after working hours under AB 2751, a “right to disconnect” bill patterned after similar restrictions in 13 countries. The bill’s author, Democratic Assembly member Matt Haney, said despite the advent of smartphones that “have blurred the boundaries between work and home life,” employees shouldn’t be expected to work around the clock. The measure is opposed by the California Chamber of Commerce.

Finally, Democrat Anthony Rendon, a long-serving state Assembly speaker, is spending his last year in the chamber leading a first-in-the-nation Select Committee on Happiness and Public Policy Outcomes. The committee isn’t planning any legislation but intends to issue a report after lawmakers adjourn in August.

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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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.”

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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KFF Health News senior fellow and editor-at-large for public health Céline Gounder discussed bird flu on CBS News’ “CBS Mornings” on April 2.

• Click here to watch Gounder on “CBS Mornings”

El Tímpano reporter Jasmine Aguilera, who has been reporting in collaboration with KFF Health News and California Healthline, discussed how Hispanic communities are affected by the process of Medicaid “unwinding” on Radio Bilingüe on April 4.

• Click here to hear Aguilera on Radio Bilingüe (en español)
• Read Aguilera’s “California’s Expanded Health Coverage for Immigrants Collides With Medicaid Reviews”

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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Insulin for Medicare beneficiaries “was costing 400 bucks a month on average. It now costs $35 a month.”

President Joe Biden, in a March 22 speech

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.

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.

our sources

WhiteHouse.gov, “Remarks by President Biden at a Campaign Event | Reno, NV,” video, March 19, 2024

U.S. Department of Health and Human Services, “New HHS Report Finds Major Savings for Americans Who Use Insulin Thanks to President Biden’s Inflation Reduction Act,” Jan. 24, 2023

U.S. Department of Health and Human Services, “Insulin Affordability and the Inflation Reduction Act: Medicare Beneficiary Savings by State and Demographics,” revised Oct. 26, 2023

Bloomberg Law, “Insulin Costs Remain Top Target Beyond Biden’s Drug Price Cuts,” Oct. 26, 2023

The American Diabetes Association, “State Insulin Copay Caps,” accessed March 28, 2024

NPR, “Eli Lilly Cuts the Price of Insulin, Capping Drug at $35 per Month Out-of-Pocket,” March 1, 2023

WhiteHouse.gov, “FACT SHEET: President Biden’s Cap on the Cost of Insulin Could Benefit Millions of Americans in All 50 States,” March 2, 2023

Health Care Cost Institute, “Capping Out-of-Pocket Spending on Insulin Would Lower Costs for a Substantial Proportion of Commercially Insured Individuals,” Oct. 15, 2021

Centers for Disease Control and Prevention, “National Diabetes Statistics Report,” updated November 2023

KFF, “Insulin Out-of-Pocket Costs in Medicare Part D,” July 28, 2022

KFF Health News, “America Worries About Health Costs — And Voters Want to Hear From Biden and Republicans,” March 8, 2024

USA Facts, “A Cap on Insulin Costs Benefits Millions of Americans With Diabetes,” April 15, 2023

The Associated Press, “Insider Q&A: What’s Behind Rising Insulin Prices?” Aug. 5, 2018

USA Today, “Insulin $35 Cap Price Now in Effect, Lowering Costs for Many Americans With Diabetes,” Jan. 3, 2024

Email interview with Mariana Socal, associate scientist at Johns Hopkins Bloomberg School of Public Health, March 28, 2024

Email interview with Stacie Dusetzina, professor of health policy at Vanderbilt University, March 29, 2024

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The Biden administration faces what looks like a growing problem for the federal Affordable Care Act’s insurance exchange: disreputable insurance brokers enrolling people who don’t need coverage or switching them to new plans without their authorization.

It happened to Michael Debriae, a restaurant server who lives in Charlotte. Unbeknownst to him, an agent in Florida with whom he’d never spoken enrolled him in an ACA plan in March 2023. Debriae had insurance through his job and discovered the Obamacare coverage only when his longtime pharmacy rejected a 90-day refill because the ACA plan didn’t allow it.

He filed a complaint with the federal marketplace and canceled the plan. But because the pharmacy had billed the ACA plan for other prescriptions, federal investigators told him they couldn’t retroactively cancel his coverage. He got stuck with a $700 tax bill — his entire tax refund, he said — for some of the tax credits the IRS paid his Obamacare insurer from March until July.

The ACA saw record enrollment for this year of more than 21 million people, but growing complaints from consumers like Debriae and agents who say they’ve lost clients to unauthorized switches cast a shadow on that achievement, a KFF Health News investigation found.

On Feb. 26, the Centers for Medicare and Medicaid Services sent an “unauthorized plan switch” update to insurance industry representatives acknowledging “a large number” of 2024 cases and outlining technical efforts to resolve problems.

“CMS is committed to protecting consumers in the marketplace,” Jeff Wu, deputy director for policy for the Center for Consumer Information & Insurance Oversight at CMS, said in a March statement.

Wu’s office didn’t disclose the number of complaints that have been filed or how many brokers it has sanctioned. CMS reports enforcement actions to state insurance departments, whose authority includes revoking licenses, Wu’s statement said.

Brokers say the ease with which unscrupulous agents can get into policyholder accounts in the 32 states served by the federal marketplace plays a major role in the problem. With only a person’s name, date of birth and state, a licensed agent can access a policyholder’s coverage through the federal exchange or its direct enrollment platforms. It’s harder to do in ACA marketplaces run by states, which often require additional information.

Federal regulators imposed new rules in June that require brokers to get policyholders’ written or recorded verbal consent before making changes to their coverage. But brokers say they’re rarely asked to provide that documentation to regulators.

CMS is “actively considering further regulatory and technological solutions,” Wu said.

Many state-run exchanges do more than the federal marketplace to secure accounts. In Colorado, for example, customers specify which brokers can have access. California sends a one-time passcode to enrollees to provide to their agents.

Jonathan Kanfer, an insurance broker in West Palm Beach, Fla., says his agency lost 700 clients to unauthorized plan switches. He said he’s had telemarketers offer him lists of potential clients, telling him, “You don’t even have to speak with the people.”

He turns them down, but he said rival agents might be enticed by the opportunity to collect the monthly commissions that insurers pay.

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Bart Klion, 95, and his wife, Barbara, faced a tough choice in January: The upstate New York couple learned that this year they could keep either their private, Medicare Advantage insurance plan — or their doctors at Saratoga Hospital.

The Albany Medical Center system, which includes their hospital, is leaving the Klions’ Humana plan — or, depending on which side is talking, the other way around. The breakup threatened to cut the couple’s lifeline to cope with serious chronic health conditions.

Klion refused to pick the lesser of two bad options without a fight.

He contacted Humana, the Saratoga hospital, and the health system. The couple’s doctors “are an exceptional group of caregivers and have made it possible for us to live an active and productive life,” he wrote to the hospital’s CEO. He called his wife’s former employer, which requires its retirees to enroll in a Humana Medicare Advantage plan to receive company health benefits. He also contacted the New York StateWide Senior Action Council, one of the nationwide State Health Insurance Assistance Programs that offer free, unbiased advice on Medicare.

Klion said they all told him the same thing: Keep your doctors or your insurance.

With rare exceptions, Advantage members are locked into their plans for the rest of the year — while health providers may leave at any time.

Disputes between insurers and providers can lead to entire hospital systems suddenly leaving the plans. Insurers must comply with extensive regulations from the Centers for Medicare & Medicaid Services, including little-known protections for beneficiaries when doctors or hospitals leave their networks. But the news of a breakup can come as a surprise.

In the nearly three decades since Congress created a private-sector alternative to original, government-run Medicare, the plans have enrolled a record 52% of Medicare’s 66 million older or disabled adults, according to the CMS. But along with getting extra benefits that original Medicare doesn’t offer, Advantage beneficiaries have discovered downsides. One common complaint is the requirement that they receive care only from networks of designated providers.

Many hospitals have also become disillusioned by the program.

“We hear every day, from our hospitals and health systems across the country, about challenges they experience with Medicare Advantage plans,” said Michelle Millerick, senior associate director for health insurance and coverage policy at the American Hospital Association, which represents about 5,000 hospitals. The hurdles include prior authorization restrictions, late or low payments, and “inappropriate denials of medically necessary covered services,” she said.

“Some of these issues get to a boiling point where decisions are made to not participate in networks anymore,” she said.

An Escape Hatch

CMS gives most Advantage members two chances to change plans: during the annual open enrollment period in the fall and from January until March 31.

But a few years ago, CMS created an escape hatch by expanding special enrollment periods, or SEPs, which allow for “exceptional circumstances.” Beneficiaries who qualify can request SEPs to change plans or return to original Medicare.

According to CMS rules, there’s an SEP patients may use if their health is in jeopardy due to problems getting or continuing care. This may include situations in which their health care providers are leaving their plans’ networks, said David Lipschutz, an associate director at the Center for Medicare Advocacy.

Another SEP is available for beneficiaries who experience “significant” network changes, although CMS officials declined to explain what qualifies as significant. However, in 2014, CMS offered this SEP to UnitedHealthcare Advantage members after the insurer terminated contracts with providers in 10 states.

When providers leave, CMS ensures that the plans maintain “adequate access to needed services,” Meena Seshamani, CMS deputy administrator and director of the federal Center for Medicare, said in a statement.

While hospitals say insurers are pushing them out, insurers blame hospitals for the turmoil in Medicare Advantage networks.

“Hospitals are using their dominant market positions to demand unprecedented double-digit rate increases and threatening to terminate their contracts if insurers don’t agree,” said Ashley Bach, a spokesperson for Regence BlueShield, which offers Advantage plans in Idaho, Oregon, Utah, and Washington state.

Patients get caught in the middle.

“It feels like the powers that be are playing chicken,” said Mary Kay Taylor, 69, who lives near Tacoma, Washington. Regence BlueShield was in a weeks-long dispute with MultiCare, one of the largest medical systems in the state, where she gets her care.

“Those of us that need this care and coverage are really inconsequential to them,” she said. “We’re left in limbo and uncertainty.”

Other breakups this year include Baton Rouge General hospital in Louisiana leaving Aetna’s Medicare Advantage plans and Baptist Health in Kentucky leaving UnitedHealthcare and Wellcare Advantage plans. In San Diego, Scripps Health has left nearly all the area’s Advantage plans.

In North Carolina, UNC Health and UnitedHealthcare renewed their contract just three days before it would have expired, and only two days before the deadline for Advantage members to switch plans. And in New York City, Aetna told its Advantage members this year to be prepared to lose access to the 18 hospitals and other care facilities in the NewYork-Presbyterian Weill Cornell Medical Center health system, before reaching an agreement on a contract last week.

Limited Choices

Taylor didn’t want to lose her doctors or her Regence Advantage plan. She’s recovering from surgery and said waiting to see how the drama would end “was really scary.”

So, last month, she enrolled in another plan, with help from Tim Smolen, director of Washington’s SHIP, Statewide Health Insurance Benefits Advisors program. Soon afterward, Regence and MultiCare agreed to a new contract. But Taylor is allowed only one change before March 31 and can’t return to Regence this year, Smolen said.

Finding an alternative plan can be like winning at bingo. Some patients have multiple doctors, who all must be easy to get to and covered by the new plan. To avoid bigger, out-of-network bills, they must find a plan that also covers their prescription drugs and includes their preferred pharmacies.

“A lot of times, we may get through the provider network and find that that’s good to go but then we get to the drugs,” said Kelli Jo Greiner, state director of Minnesota’s SHIP, Senior LinkAge Line. Since Jan. 1, counselors there have helped more than 900 people switch to new Advantage plans after HealthPartners, a large health system based in Bloomington, left Humana’s Medicare Advantage plans.

Choices are more limited for low-income beneficiaries who receive subsidies for drugs and monthly premiums, which only a few plans accept, Greiner said.

For almost 6 million people, a former employer chooses a Medicare Advantage plan and requires them to enroll in it to receive retiree health benefits. If they want to keep a provider who leaves that plan, those beneficiaries must forfeit all their employer-subsidized health benefits, often including coverage for their families.

The threat of losing coverage for their providers was one reason some New York City retirees sued Mayor Eric Adams to stop efforts to force 250,000 of them into an Aetna Advantage plan, said Marianne Pizzitola, president of the New York City Organization of Public Service Retirees, which filed the lawsuit. The retirees won three times, and city officials are appealing again.

CMS requires Advantage plans to notify their members 45 days before a primary care doctor leaves their plan and 30 days before a specialist physician drops out. But counselors who advise Medicare beneficiaries say the notice doesn’t always work.

“A lot of people are experiencing disruptions to their care,” said Sophie Exdell, a program manager in San Diego for California’s SHIP, the Health Insurance Counseling & Advocacy Program. She said about 32,000 people in San Diego lost access to Scripps Health providers when the system left most of the area’s Advantage plans. Many didn’t get the notice or, if they did, “they couldn’t get through to someone to get help making a change,” she said.

CMS also requires plans to comply with network adequacy rules, which limit how far and how long members must travel to primary care doctors, specialists, hospitals, and other providers. The agency checks compliance every three years or more often if necessary.

In the end, Bart Klion said he had no alternative but to stick with Humana because he and his wife couldn’t afford to give up their retiree health benefits. He was able to find doctors willing to take on new patients this year.

But he wonders: “What happens in 2025?”

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 Host Julie Rovner KFF Health News @jrovner Read Julie's stories. Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

In its first abortion case since the overturning of Roe v. Wade in 2022, the Supreme Court this week looked unlikely to uphold an appeals court ruling that would dramatically restrict the availability of the abortion pill mifepristone. But the court already has another abortion-related case teed up for April, and abortion opponents have several more challenges in mind to limit the procedure in states where it remains legal.

Meanwhile, Republicans, including former President Donald Trump, continue to take aim at popular health programs like Medicare, Medicaid, and the Affordable Care Act on the campaign trail — much to the delight of Democrats, who feel they have an advantage on the issue.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Sarah Karlin-Smith of the Pink Sheet, and Lauren Weber of The Washington Post.

Panelists Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories. Alice Miranda Ollstein Politico @AliceOllstein Read Alice's stories. Lauren Weber The Washington Post @LaurenWeberHP Read Lauren's stories.

Among the takeaways from this week’s episode:

• At least two conservative Supreme Court justices joined the three more progressive members of the bench during Tuesday’s oral arguments in expressing skepticism about the challenge to the abortion drug mifepristone. Their questions focused primarily on whether the doctors challenging the drug had proven they were harmed by its availability — as well as whether the best remedy was to broadly restrict access to the drug for everyone else.
• A ruling in favor of the doctors challenging mifepristone would have the potential to reduce the drug’s safety and efficacy: In particular, one FDA decision subject to reversal adjusted dosing, and switching to using only the second drug in the current two-drug abortion pill regimen would also slightly increase the risk of complications.
• Two conservative justices also raised the applicability of the Comstock Act, a long-dormant, 19th-century law that restricts mail distribution of abortion-related items. Their questions are notable as advisers to Trump explore reviving the unenforced law should he win this November.
• Meanwhile, a Democrat in Alabama flipped a state House seat campaigning on abortion-related issues, as Trump again discusses implementing a national abortion ban. The issue is continuing to prove thorny for Republicans.
• Even as Republicans try to avoid running on health care issues, the Heritage Foundation and a group of House Republicans have proposed plans that include changes to the health care system. Will the plans do more to rev up their base — or Democrats?
• This Week in Medical Misinformation: TikTok’s algorithm is boosting misleading information about hormonal birth control — and in some cases resulting in more unintended pregnancies.

Also this week, Rovner interviews KFF Health News’ Tony Leys, who wrote a KFF Health News-NPR “Bill of the Month” feature about Medicare and a very expensive air-ambulance ride. If you have a baffling or outrageous medical bill you’d like to share with us, you can do that here.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:

Julie Rovner: KFF Health News’ “Overdosing on Chemo: A Common Gene Test Could Save Hundreds of Lives Each Year,” by Arthur Allen.

Alice Miranda Ollstein: Stat’s “Fetal Tissue Research Gains in Importance as Roadblocks Multiply,” by Olivia Goldhill.

Sarah Karlin-Smith: The Washington Post’s “The Confusing, Stressful Ordeal of Flying With a Breast Pump,” by Hannah Sampson and Ben Brasch.

Lauren Weber: Stateline’s “Deadly Fires From Phone, Scooter Batteries Leave Lawmakers Playing Catch-Up on Safety,” by Robbie Sequeira.

Also mentioned on this week’s podcast:

• The Washington Post’s “Nikki Haley Wants ‘Consensus’ on Contraception. It’s Not That Easy,” by Julie Rovner.
• Politico’s “Justices Were Skeptical of Abortion Pills Arguments. Anti-Abortion Groups Have Backup Plans,” by Alice Miranda Ollstein.
• Politico’s “Why Portland Failed Where Portugal Succeeded in Decriminalizing Drugs,” by Carmen Paun and Aitor Hernández-Morales.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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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When she was in ninth grade, Fiona Lu fell into a depression. She had trouble adjusting to her new high school in Orange County, California, and felt so isolated and exhausted that she cried every morning.

Lu wanted to get help, but her Medi-Cal plan wouldn’t cover therapy unless she had permission from a parent or guardian.

Her mother — a single parent and an immigrant from China — worked long hours to provide for Fiona, her brother, and her grandmother. Finding time to explain to her mom what therapy was, and why she needed it, felt like too much of an obstacle.

“I wouldn’t want her to have to sign all these forms and go to therapy with me,” said Lu, now 18 and a freshman at UCLA. “There’s a lot of rhetoric in immigrant cultures that having mental health concerns and getting treatment for that is a Western phenomenon.”

By her senior year of high school, Lu turned that experience into activism. She campaigned to change state policy to allow children 12 and older living in low-income households to get mental health counseling without their parents’ consent.

In October of last year, Gov. Gavin Newsom signed a new law expanding access to young patients covered by Medicaid, which is called Medi-Cal in California.

Teenagers with commercial insurance have had this privilege in the state for more than a decade. Yet parents of children who already had the ability to access care on their own were among the most vocal in opposing the expansion of that coverage by Medi-Cal.

Many parents seized on the bill to air grievances about how much control they believe the state has over their children, especially around gender identity and care.

One mother appeared on Fox News last spring calling school therapists “indoctrinators” and saying the bill allowed them to fill children’s heads with ideas about “transgenderism” without their parents knowing.

Those arguments were then repeated on social media and at protests held across California and in other parts of the country in late October.

At the California Capitol, several Republican lawmakers voted against the bill, AB 665. One of them was Assembly member James Gallagher of Sutter County.

“If my child is dealing with a mental health crisis, I want to know about it,” Gallagher said while discussing the bill on the Assembly floor last spring. “This misguided, and I think wrongful, trend in our policy now that is continuing to exclude parents from that equation and say they don’t need to be informed is wrong.”

State lawmaker salaries are too high for them or their families to qualify for Medi-Cal. Instead, they are offered a choice of 15 commercial health insurance plans, meaning children like Gallagher’s already have the privileges that he objected to in his speech.

To Lu, this was frustrating and hypocritical. She said she felt that the opponents lining up against AB 665 at legislative hearings were mostly middle-class parents trying to hijack the narrative.

“It’s inauthentic that they were advocating against a policy that won’t directly affect them,” Lu said. “They don’t realize that this is a policy that will affect hundreds of thousands of other families.”

Sponsors of AB 665 presented the bill as a commonsense update to an existing law. In 2010, California lawmakers had made it easier for young people to access outpatient mental health treatment and emergency shelters without their parents’ consent by removing a requirement that they be in immediate crisis.

But at the last minute, lawmakers in 2010 removed the expansion of coverage for teenagers by Medi-Cal for cost reasons. More than a decade later, AB 665 is meant to close the disparity between public and private insurance and level the playing field.

“This is about equity,” said Assembly member Wendy Carrillo, a Los Angeles Democrat and the bill’s author.

The original law, which regulated private insurance plans, passed with bipartisan support and had little meaningful opposition in the legislature, she said. The law was signed by a Republican governor, Arnold Schwarzenegger.

“Since then, the extremes on both sides have gotten so extreme that we have a hard time actually talking about the need for mental health,” she said.

After Carrillo introduced the bill last year, her office faced death threats. She said the goal of the law is not to divide families but to encourage communication between parents and children through counseling.

More than 20 other states allow young people to consent to outpatient mental health treatment without their parents’ permission, including Colorado, Ohio, Tennessee, and Alabama, according to a 2015 paper by researchers at Rowan University.

To opponents of the new law, like Erin Friday, a San Francisco Bay Area attorney, AB 665 is part of a broader campaign to take parents’ rights away in California, something she opposes regardless of what kind of health insurance children have.

Friday is a self-described lifelong Democrat. But then she discovered her teenager had come out as transgender at school and for months had been referred to by a different name and different pronouns by teachers, without Friday’s knowledge. She devoted herself to fighting bills that she saw as promoting “transgender ideology.” She said she plans to sue to try to overturn the new California law before it takes effect this summer.

“We’re giving children autonomy they should never have,” Friday said.

Under the new law, young people will be able to talk to a therapist about gender identity without their parents’ consent. But they cannot get residential treatment, medication, or gender-affirming surgery without their parents’ OK, as some opponents have suggested.

Nor can minors run away from home or emancipate themselves under the law, as opponents have also suggested.

“This law is not about inpatient psychiatric facilities. This law is not about changing child custody laws,” said Rachel Velcoff Hults, an attorney and the director of health of the National Center for Youth Law, which supported AB 665.

“This law is about ensuring when a young person needs counseling or needs a temporary roof over their head to ensure their own safety and well-being, that we want to make sure they have a way to access it,” she said.

Removing the parental consent requirement could also expand the number of mental health clinicians in California willing to treat young people on Medi-Cal. Without parental consent, under the old rules, clinicians could not be paid by Medi-Cal for the counseling they provided, either in a private practice or a school counselor’s office.

Esther Lau struggled with mental health as a high school student in Fremont. Unlike Lu, she had her parents’ support, but she couldn’t find a therapist who accepted Medi-Cal. As the only native English speaker in her family, she had to navigate the health care bureaucracy on her own.

For her, AB 665 will give clinicians incentive to accept more young people from low-income households into their practices.

“For the opposition, it’s just about political tactics and furthering their agenda,” Lau said. “The bill was designed to expand access to Medi-Cal youth, period.”

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

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

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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This story can be republished for free (details).