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.”

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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.

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• Read Aguilera’s “California’s Expanded Health Coverage for Immigrants Collides With Medicaid Reviews”

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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?”

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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.

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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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Sara England was putting together Ghostbusters costumes for Halloween when she noticed her baby wasn’t doing well.

Her 3-month-old son, Amari Vaca, had undergone open-heart surgery two months before, so she called his cardiologist, who recommended getting him checked out. England assigned Amari’s grandparents to trick-or-treat duty with his three older siblings and headed to the local emergency room.

Once England and the baby arrived at Natividad Medical Center in Salinas, California, she said, doctors could see Amari was struggling to breathe and told her that he needed specialized care immediately, from whichever of two major hospitals in the region had an opening first.

Even as they talked, Amari was declining rapidly, his mother said. Doctors put a tube down his throat and used a bag to manually push air into his lungs for over an hour to keep his oxygen levels up until he was stable enough to switch to a ventilator.

According to England, late that night, when doctors said the baby was stable enough to travel, his medical team told her that a bed had opened up at the University of California-San Francisco Medical Center and that staffers there were ready to receive him.

She, her son, and an EMT boarded a small plane around midnight. Ground ambulances carried them between the hospitals and airports.

Amari was diagnosed with respiratory syncytial virus, or RSV, and spent three weeks in the hospital before recovering and returning home.

Then the bill came.

The Patient: Amari Vaca, now 1, who was covered by a Cigna policy sponsored by his father’s employer at the time.

Medical Services: An 86-mile air-ambulance flight from Salinas to San Francisco.

Service Provider: Reach Medical Holdings, which is part of Global Medical Response, an industry giant backed by private equity investors. Global Medical Response operates in all 50 states and has said it has a total of 498 helicopters and airplanes. It is out-of-network with Amari’s Cigna plan.

Total Bill: $97,599. Cigna declined to cover any part of the bill.

What Gives: Legal safeguards are in place to protect patients from big bills for some out-of-network care, including air-ambulance rides.

Medical billing experts said the No Surprises Act, a federal law enacted in 2022, could have protected Amari’s family from receiving the $97,000 “balance bill,” leaving the insurer and the air-ambulance provider to determine fair payment according to the law. But the protections apply only to care that health plans determine is “medically necessary” — and insurers get to define what that means in each case.

According to its coverage denial letter, Cigna determined that Amari’s air-ambulance ride was not medically necessary. The insurer cited its reasoning: He could have taken a ground ambulance instead of a plane to cover the nearly 100 roadway miles between Salinas and San Francisco.

“I thought there must have been a mistake,” England said. “There’s no way we can pay this. Is this a real thing?”

In the letter, Cigna said Amari’s records did not show that other methods of transportation were “medically contraindicated or not feasible.” The health plan also noted the absence of documentation that he could not be reached by a ground ambulance for pickup or that a ground ambulance would be unfeasible because of “great distances or other obstacles.”

Lastly, it said records did not show a ground ambulance “would impede timely and appropriate medical care.”

When KFF Health News asked Cigna what records were referenced when making this decision, a spokesperson declined to respond.

Caitlin Donovan, a spokesperson for the National Patient Advocate Foundation, said that even though Amari’s bill isn’t technically in violation of the No Surprises Act, the situation is exactly what the law was designed to avoid.

“What they’re basically saying is that the parents should have opted against the advice of the physician,” Donovan said. “That’s insane. I know ‘medical necessity’ is this nebulous term, but it seems like it’s becoming a catch-all for turning down patients.”

On Feb. 5, the National Association of Emergency Medical Services Physicians said that since the No Surprises Act was enacted two years ago, it has seen a jump in claim denials based on “lack of medical necessity,” predominantly for air-ambulance transports between facilities.

In a letter to federal health officials, the group cited reasons commonly given for inappropriate medical-necessity denials observed by some of its 2,000 members, such as “the patient should have been taken elsewhere” or “the patient could have been transported by ground ambulance.”

The association urged the government to require that health plans presume medical necessity for inter-facility air transports ordered by a physician at a hospital, subject to a retrospective review.

Such decisions are often “made under dire circumstances — when a hospital is not capable of caring for or stabilizing a particular patient or lacks the clinical resources to stabilize a patient with a certain clinical diagnosis,” the group’s president, José Cabañas, wrote in the letter. “Clinical determinations made by a referring physician (or another qualified medical professional) should not be second-guessed by a plan.”

Patricia Kelmar, a health policy expert and senior director with the U.S. Public Interest Research Groups, noted, however, that hospitals could familiarize themselves with local health plans, for example, and establish protocol, so that before they call an air ambulance, they know if there are in-network alternatives and, if not, what items the plan needs to justify the claim and provide payment.

“The hospitals who live and breathe and work in our communities should be considering the individuals who come to them every day,” Kelmar said. “I understand in emergency situations you generally have a limited amount of time, but, in most situations, you should be familiar with the plans so you can work within the confines of the patient’s health insurance.”

England said Cigna’s denial particularly upset her.

“As parents, we did not make any of the decisions other than to say, yes, we’ll do that,” she said. “I don’t know how else it could have gone.”

The Resolution: England twice appealed the air-ambulance charge to the insurer, but both times Cigna rejected the claim, maintaining that “medical necessity” had not been established.

The final step of the appeals process is an external review, in which a third party evaluates the case. England said staff members at Natividad Medical Center in Salinas — which arranged Amari’s transport — declined to write an appeal letter on his behalf, explaining to her that doing so is against the facility’s policy.

Using her son’s medical records, which the Natividad staff provided, England said she is writing a letter herself to assert why the air ambulance was medically necessary.

Andrea Rosenberg, a spokesperson for Natividad Medical Center, said the hospital focuses on “maintaining the highest standards of health care and patient well-being.”

Despite receiving a waiver from England authorizing the medical center to discuss Amari’s case, Rosenberg did not respond to questions from KFF Health News, citing privacy issues. A Cigna spokesperson told KFF Health News that the insurer has in-network alternatives to the out-of-network ambulance provider, but — despite receiving a waiver authorizing Cigna to discuss Amari’s case — declined to answer other questions.

“It is disappointing that CALSTAR/REACH is attempting to collect this egregious balance from the patient’s family,” the Cigna spokesperson, Justine Sessions, said in an email, referring to the air-ambulance provider. “We are working diligently to try to resolve this for the family.”

On March 13, weeks after being contacted by KFF Health News, England said, a Cigna representative contacted her and offered assistance with her final appeal, the one reviewed by a third party. The representative also told her the insurer had attempted to contact the ambulance provider but had been unable to resolve the bill with them.

Global Medical Response, the ambulance provider, declined to comment.

England said she and her husband have set aside two hours each week for him to take care of their four kids while she shuts herself in her room and makes calls about their medical bills.

“It’s just another stress,” she said. “Another thing to get in the way of us being able to enjoy our family.”

The Takeaway: Kelmar said she encourages patients to appeal bills that seem inaccurate. Even if the plan denies it internally, push forward to an external review so someone outside the company has a chance to review, she said.

In the case of “medical necessity” denials, Kelmar recommended patients work with the medical provider to provide more information to the insurance company to underscore why an emergency transport was required.

More from Bill of the Month

• Without Medicare Part B’s Shield, Patient’s Family Owes $81,000 for a Single Air-Ambulance Flight Feb 27, 2024
• The Colonoscopies Were Free. But the ‘Surgical Trays’ Came With $600 Price Tags. Jan 25, 2024
• When a Quick Telehealth Visit Yields Multiple Surprises Beyond a Big Bill Dec 19, 2023

Doctors who write a letter or make a call to a patient’s insurer explaining a decision can also ask for a “peer-to-peer review,” meaning they would discuss the case with a medical expert in their field.

Kelmar said patients with employer-sponsored health plans can ask their employer’s human resources department to advocate for them with the health plan. It’s in the employers’ best interest since they often pay a lot for these health plans, she said.

No matter what, Kelmar said, patients shouldn’t let fear stop them from appealing a medical bill. Patients who appeal have a high likelihood of winning, she said.

Patients with government health coverage can further appeal insurance denials by filing a complaint with the Centers for Medicare & Medicaid Services. Those who believe they have received an inappropriate bill from an out-of-network provider can call the No Surprises Act help desk at 1-800-985-3059.

Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

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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OAKLAND, California – El Medi-Cal llegó a Antonio Abundis cuando el conserje más lo necesitaba.

Poco después que Abundis pasara de tener cobertura limitada a una cobertura completa en 2022, bajo la expansión del Medi-Cal de California para adultos mayores sin papeles, fue diagnosticado con leucemia, un tipo de cáncer que afecta las células de la sangre.

El padre de tres hijos, de voz suave, tomó la noticia con calma cuando su médico le dijo que sus análisis de sangre sugerían que su cáncer no estaba en una etapa avanzada. Sus siguientes pasos fueron hacerse más pruebas y tener un plan de tratamiento con un equipo de cáncer en Epic Care, en Emeryville.

Pero todo eso se fue por la borda cuando se presentó en julio pasado para hacerse un análisis de sangre en La Clínica de La Raza en Oakland, y le dijeron que ya no era beneficiario de Medi-Cal.

“Nunca mandaron una carta ni nada de que a mí me la había negado”, dijo Abundis, ahora de 63 años, sobre la pérdida de su cobertura.

Abundis es uno de los cientos de miles de latinos de California que han sido expulsados de Medi-Cal —el programa estatal de Medicaid para personas de bajos ingresos— a medida que los estados reanudaban las verificaciones de elegibilidad, que se habían suspendido en el punto más álgido de la pandemia de covid-19.

El proceso de redeterminación ha afectado de forma desproporcionada a los latinos, que constituyen la mayoría de los beneficiarios de Medi-Cal.

Según el Departamento de Servicios de Salud de California (DHCS), más de 613,000 de los 1,24 millones de residentes que fueron dados de baja se identifican como latinos. Algunos, incluido Abundis, habían obtenido la cobertura poco tiempo antes, cuando el estado comenzó a expandir Medi-Cal para ofrecer cobertura a inmigrantes indocumentados.

El choque entre las políticas estatales y las federales no sólo ha significado un duro golpe para los beneficiarios: también disparó la demanda de asistencia para realizar los trámites de inscripción.

Esto ocurre porque muchas personas son excluidas de Medi-Cal por cuestiones administrativas.

Los grupos de salud que trabajan con las comunidades latinas informan que están inundados de solicitudes de ayuda. Al mismo tiempo, una encuesta patrocinada por el estado sugiere que los hogares hispanos tienen más probabilidades que otros grupos étnicos o raciales de perder la cobertura porque tienen menos información sobre el proceso de renovación.

También pueden tener dificultades para defenderse por sí solos.

Algunos defensores de salud están presionando para que haya una pausa en este proceso. Advierten que las desafiliaciones no solo socavarán los esfuerzos del estado para reducir el número de personas sin seguro, sino que podrían exacerbar las disparidades en salud, especialmente para un grupo étnico que sufrió fuerte el peso de la pandemia.

Un estudio nacional encontró que los latinos en el país tuvieron tres veces más probabilidades de desarrollar covid y el doble de probabilidades de morir a causa de la enfermedad que la población en general, en parte porque tienden a vivir en hogares más hacinados o multigeneracionales y tienen trabajos en servicios, de cara al público.

“Estas dificultades nos colocan a todos como comunidad en un estatus más frágil, en el cual la red de seguridad es aún más significativa”, dijo Seciah Aquino, directora ejecutiva de la Latino Coalition for a Healthy California, una organización de defensa de salud.

La asambleísta Tasha Boerner (demócrata de Encinitas) ha presentado un proyecto de ley que desaceleraría las bajas permitiendo que las personas de 19 años o más mantengan automáticamente su cobertura durante 12 meses, y extendiendo las políticas flexibles de la era pandémica, como no requerir prueba de ingresos para renovar la cobertura en ciertos casos. Esto beneficiaría a los hispanos, que representan casi el 51% de la población de Medi-Cal en comparación con el 40% de la población total del estado.

La oficina del gobernador dijo que no comenta sobre proyectos legislativos que están aún en proceso.

Tony Cava, vocero del Departamento de Servicios de Atención Médica (DHCS), dijo en un correo electrónico que la agencia ha tomado medidas para aumentar el número de personas reinscritas automáticamente en Medi-Cal y no cree que sea necesaria una pausa. La tasa de desafiliación disminuyó un 10% de noviembre a diciembre, apuntó Cava.

Sin embargo, funcionarios estatales reconocen que se podría hacer más para ayudar a las personas a completar sus solicitudes. “Todavía no estamos llegando a ciertos sectores”, dijo Yingjia Huang, subdirectora adjunta de beneficios de atención médica y elegibilidad del DHCS.

California fue el primer estado en ampliar la elegibilidad de Medicaid a todos los inmigrantes que calificaran, sin importar su estatus migratorio, implementándolo gradualmente durante varios años: niños en 2016, adultos jóvenes de 19 a 26 años en 2020, personas de 50 años en adelante en 2022, y todos los adultos restantes este año.

Pero California, como otros estados, reanudó las verificaciones de elegibilidad en abril pasado, y se espera que el proceso continúe hasta mayo. El estado ahora está viendo que las tasas de desafiliación vuelven a los niveles previos a la pandemia, o el 19%-20% de la población de Medi-Cal cada año, según el DHCS.

Jane García, directora ejecutiva de La Clínica de La Raza, testificó ante el Comité de Salud de la Junta de Supervisores del condado de Alameda que las desafiliaciones siguen siendo un desafío, justo cuando su equipo intenta inscribir a residentes recién elegibles. “Es una carga enorme para nuestro personal”, les dijo a los supervisores en enero.

Aunque muchos beneficiarios ya no califican porque sus ingresos aumentaron, muchos más han sido eliminados de los registros por no responder a avisos o devolver documentos. En muchos casos, los paquetes de documentos para renovar la cobertura se enviaron a direcciones antiguas. Muchos se enteran de que perdieron la cobertura recién cuando van al médico.

“Sabían que algo estaba pasando”, dijo Janet Anwar, gerenta de elegibilidad en el Tiburcio Vásquez Health Center, en East Bay. “No sabían exactamente qué era, cómo los iba a afectar hasta que llegó el día y fueron desafiliados. Y estaban haciéndose un chequeo, o programando una cita, y luego… ‘Oye, perdiste tu cobertura'”.

Y la reinscripción es un desafío. Una encuesta patrocinada por el estado publicada el 12 de febrero por la California Health Care Foundation halló que el 30% de los hogares hispanos intentaron completar un formulario de renovación sin suerte, en comparación con el 19% de los hogares blancos no hispanos. Y el 43% de los hispanos informaron que les gustaría volver a comenzar con Medi-Cal, pero no sabían cómo, en comparación con el 32% de las personas en hogares blancos no hispanos.

La familia Abundis está entre las que no saben dónde obtener respuestas a sus preguntas. Aunque la esposa de Abundis envió la documentación de renovación de Medi-Cal para toda la familia en octubre, ella y dos hijos que aún viven con ellos pudieron mantener la cobertura; Abundis fue el único que la perdió.

No ha recibido una explicación de por qué lo sacaron de Medi-Cal ni ha sido notificado de cómo apelar o volver a solicitarlo.

Ahora se preocupa de que tal vez no califique por sí solo según sus ingresos anuales de aproximadamente $36,000, ya que el límite es de $20,121 para un individuo, pero de $41,400 para una familia de cuatro.

Es probable que un navegador pueda verificar si él y su familia califican como un hogar o ayudarlo a inscribirse en un plan privado que puede costar menos de $10 al mes en primas en Covered California. Este mercado de seguros de salud permite la inscripción especial cuando las personas pierden la cobertura de Medi-Cal o la que tienen a través de sus trabajos.

Pero Abundis supone que no podrá pagar primas o copagos, así que no ha presentado una solicitud.

Abundis, quien visitó a un médico por primera vez en mayo de 2022 debido a una fatiga sin causa aparente, dolor constante en la espalda y las rodillas, falta de aliento y pérdida de peso inexplicable, teme no poder pagar la atención médica. La Clínica de La Raza, el centro de salud comunitario en donde le hicieron análisis de sangre, lo ayudó ese día a que no tuviera que pagar por adelantado, pero desde entonces dejó de buscar atención médica.

Más de un año después de su diagnóstico, todavía no sabe en qué etapa del cáncer se encuentra ni cuál debería ser su plan de tratamiento. Aunque la detección temprana del cáncer puede aumentar las posibilidades de supervivencia, algunos tipos de leucemia avanzan rápidamente. Sin más pruebas, Abundis no conoce su pronóstico.

Yo estoy mentalizado”, dijo Abundis sobre su cáncer. “Lo que pase, pase”.

Incluso aquellos que buscan ayuda se topan con desafíos. Marisol, una inmigrante mexicana sin papeles, de 53 años, que vive en Richmond, California, intentó restablecer la cobertura durante meses. Aunque el estado experimentó una caída del 26% en las bajas de diciembre a enero, la proporción de latinos a los que se les canceló la cobertura durante ese período permaneció casi igual, lo que sugiere que enfrentan más barreras para la renovación.

Marisol, quien pidió que se usara su nombre de pila por temor a la deportación, también calificó para la cobertura completa de Medi-Cal durante la expansión estatal a todos los inmigrantes de 50 años en adelante.

En diciembre, recibió un paquete informándole que los ingresos de su hogar excedían el umbral de Medi-Cal, algo que ella creyó que era un error. El esposo de Marisol está sin trabajo debido a una lesión en la espalda, dijo, y sus dos hijos mantienen a su familia principalmente con trabajos de medio tiempo en Ross Dress for Less.

Ese mes, Marisol visitó una sucursal de Richmond del Departamento de Empleo y Servicios Humanos del condado de Contra Costa, con la esperanza de hablar con un navegador. En cambio, le dijeron que dejara su documentación y que llamara a un número de teléfono para verificar el estatus de su solicitud.

Desde entonces, llamó muchas veces y pasó horas en espera, pero no ha podido hablar con nadie. Los funcionarios del condado reconocieron tiempos de espera más prolongados debido al aumento de llamadas, y dijeron que el tiempo promedio es de 30 minutos.

“Entendemos la frustración de los miembros de la comunidad cuando a veces tienen dificultades para comunicarse”, escribió la vocera Tish Gallegos en un correo electrónico. Gallegos señaló que el centro de llamadas aumenta la dotación de personal durante las horas pico.

Después que El Tímpano contactara al condado para hacer comentarios, Marisol dijo que un trabajador de elegibilidad la contactó, y le explicó que su familia fue dada de baja porque sus hijos habían presentado impuestos por separado, por lo que el sistema de Medi-Cal determinó su elegibilidad individualmente en lugar de como familia.

El condado reintegró a Marisol y a su familia el 15 de marzo. Marisol dijo que recuperar Medi-Cal fue un final alegre pero agridulce para una lucha de meses, especialmente sabiendo que otras personas son desafiliadas por cuestiones de procedimiento. “Tristemente, tiene que haber presión para que arreglen algo”, dijo.

Jasmine Aguilera de El Tímpano está participando de la Journalism & Women Symposium’s Health Journalism Fellowship, apoyada por The Commonwealth Fund. Vanessa Flores, Katherine Nagasawa e Hiram Alejandro Durán de El Tímpano colaboraron con este artículo.

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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OAKLAND, Calif. — Medi-Cal health coverage kicked in for Antonio Abundis just when the custodian needed it most.

Shortly after Abundis transitioned from limited to full-scope coverage in 2022 under California’s expansion of Medi-Cal to older residents without legal immigration status, he was diagnosed with leukemia, a cancer affecting the blood cells. The soft-spoken father of three took the news in stride as his doctor said his blood test suggested his cancer wasn’t advanced. His next steps were to get more tests and formulate a treatment plan with a cancer team at Epic Care in Emeryville. But all of that was derailed when he showed up last July for bloodwork at La Clínica de La Raza in Oakland and was told he was no longer on Medi-Cal.

“They never sent me a letter or anything telling me that I was removed,” Abundis, now 63, said in Spanish about losing his insurance.

Abundis is among hundreds of thousands of Latinos who have been kicked off Medi-Cal, California’s Medicaid program for low-income people, as states resume annual eligibility checks that were paused at the height of the covid-19 pandemic. The redetermination process, as it is known, has disproportionately affected Latinos, who make up a majority of Medi-Cal beneficiaries. According to the California Department of Health Care Services, more than 653,000 of the more than 1.3 million residents who have been disenrolled over eight months identify as Latino. Some, including Abundis, had only recently gained coverage as the state expanded Medi-Cal to residents without legal residency.

The collision of state and federal policies has not only set off enrollee whiplash but swelled demand for enrollment assistance as people are dropped from Medi-Cal, often for procedural issues. Health groups serving Latino communities report being inundated by requests for help, but at the same time, a state-sponsored survey suggests Hispanic households are more likely than other ethnic or racial groups to lose coverage because they’re less knowledgeable of the renewal process. They may also struggle to advocate for themselves.

Some health advocates are pressing for a pause. They warn that disenrollments will not only undercut the state’s effort to reduce the number of uninsured but could exacerbate health disparities, particularly for an ethnic group that bore the brunt of the pandemic. One national study found that Latinos in the U.S. were three times as likely to contract covid and twice as likely to die of it than the general population, in part because they tend to live in more crowded or multigenerational households and work in front-line jobs.

“These difficulties place all of us as a community in this more fragile state where the safety net means even more now,” said Seciah Aquino, executive director of the Latino Coalition for a Healthy California, a health advocacy organization.

Assembly member Tasha Boerner, an Encinitas Democrat, has introduced a bill that would slow disenrollments by allowing people 19 and older to keep their coverage automatically for 12 months and extend flexible pandemic-era policies such as not requiring proof of income in certain cases for renewals. That would benefit Hispanics, who make up nearly 51% of the Medi-Cal population compared with 40% of the overall state population. The governor’s office said it does not comment on pending legislation.

Tony Cava, a spokesperson for the Department of Health Care Services, said in an email that the agency has taken steps to increase the number of people automatically reenrolled in Medi-Cal and does not consider a pause necessary. The disenrollment rate dropped 10% from November to December, Cava said.

Still, state officials acknowledge more could be done to help people complete their applications. “We’re still not reaching certain pockets,” said Yingjia Huang, assistant deputy director of health care benefits and eligibility at DHCS.

California was the first state to expand Medicaid eligibility to all qualified immigrants regardless of legal status, phasing it in over several years: children in 2016, young adults ages 19-26 in 2020, people 50 and older in 2022, and all remaining adults this year.

But California, like other states, resumed eligibility checks last April, and the process is expected to continue through May. The state is now seeing disenrollment rates return to pre-pandemic levels, or 19%-20% of the Medi-Cal population each year, according to DHCS.

Jane Garcia, CEO of La Clínica de La Raza, testified before the Alameda County Board of Supervisors’ health committee that disenrollments continue to pose a challenge just as her team tries to enroll newly eligible residents. “It’s a heck of a load on our staff,” she told supervisors in January.

Although many beneficiaries no longer qualify because their incomes rose, more have been dropped from the rolls for failing to respond to notices or return paperwork. Often, renewal packets were sent to old addresses. Many find out they’ve lost coverage only upon seeking medical care.

“They knew something was happening,” said Janet Anwar, eligibility manager at Tiburcio Vasquez Health Center in the East Bay. “They didn’t know exactly what it was, how it was gonna affect them until actually the day came and they were disenrolled. And they were getting checked in or scheduling an appointment, then, ‘Hey, you lost your coverage.’”

But reenrollment is a challenge. A state-sponsored survey published Feb. 12 by the California Health Care Foundation found 30% of Hispanic households tried but were unable to complete a renewal form, compared with 19% for white non-Hispanic households. And 43% of Hispanics reported they would like to restart Medi-Cal but did not know how, versus 32% of people in white non-Hispanic households. 

The Abundis family is among those who don’t know where to get their questions answered. Though Abundis’ wife submitted the family’s Medi-Cal renewal paperwork in October, his wife and two children who still live with them were able to maintain coverage; Abundis was the only one dropped. He hasn’t received an explanation for being disenrolled nor been notified how to appeal or reapply. Now he worries he may not qualify on his own based on his roughly $36,000 annual income since the limit is $20,121 for an individual but $41,400 for a family of four.

It is likely an eligibility worker could check if he and his family qualify as a household or assist him with signing up for a private plan that can run less than $10 a month for premiums on Covered California. The health insurance exchange allows for special enrollment when people lose Medi-Cal or employer-based coverage. But Abundis assumes he won’t be able to afford premiums or copays, so he hasn’t applied.

Abundis, who first visited a doctor in May 2022 about unrelenting fatigue, constant pain in his back and knees, shortness of breath, and unexplained weight loss, worries he’s unable to afford medical care. La Clínica de La Raza, the community health clinic where he received blood testing, worked with him that day so he didn’t have to pay upfront, but he has since stopped seeking medical care.

More than a year after his diagnosis, Abundis still doesn’t know which stage cancer he has, or what his treatment plan should be. Though early cancer detection can lead to a higher chance of survival, some types of leukemia advance quickly. Without further testing, Abundis does not know his outlook.

“I’ve mentally prepared,” Abundis said of his cancer. “What happens, happens.”

Even those who seek help run into challenges. Marisol, a 53-year-old immigrant from Mexico who lives in Richmond, California, without legal permission, tried to reestablish coverage for months. Although the state saw a 26% drop in disenrollments from December to January, the share of Latinos disenrolled during that period remained nearly the same, suggesting they face more barriers to renewal.

Marisol, who requested her last name be withheld out of fear of deportation, also qualified for full-scope Medi-Cal during the state expansion to all immigrants 50 and older.

She received a packet in December letting her know that her household income exceeded Medi-Cal’s threshold — something she believed was an error. Marisol’s husband is out of work due to a back injury, she said, and her two children primarily support their family with part-time jobs at Ross Dress for Less.

That month, Marisol visited a Richmond branch office of the Contra Costa County Employment and Human Services Department, hoping to speak to an eligibility worker. Instead, she was told to leave her paperwork and to call a phone number to check her application status. Since then, she made numerous calls and spent hours on hold, but has not been able to speak with anyone.

County officials acknowledged longer wait times due to increased calls and said the average wait time is 30 minutes. “We understand community members’ frustration when they have difficulty getting through at times,” spokesperson Tish Gallegos wrote in an email. Gallegos noted the call center increases staffing during peak hours.

After El Tímpano reached out to the county for comment, Marisol said she was contacted by an eligibility worker, who explained that her family was dropped because their children had filed taxes separately, so the Medi-Cal system determined their eligibility individually rather than as one household. The county reinstated Marisol and her family on March 15.

Marisol said regaining Medi-Cal was a joyous but bittersweet ending to a months-long struggle, especially knowing that other people get dropped for procedural issues. “Sadly, there has to be pressure for them to fix something,” she said.

Jasmine Aguilera of El Tímpano is participating in the Journalism & Women Symposium’s Health Journalism Fellowship, supported by The Commonwealth Fund. Vanessa Flores, Katherine Nagasawa, and Hiram Alejandro Durán of El Tímpano contributed to this article.

Medi-Cal Resources (in Spanish):

How to apply for Medi-Cal

How to get insurance and low-cost health care in California

How to apply for Covered California

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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