KHN senior correspondent Angela Hart discussed California’s contract with Civica to make lower-cost insulin on KQED’s “Forum” on March 23. She also discussed California’s potential plan to use Medicaid funding to cover up to six months of rent for low-income enrollees on KCBS’ “State of California” on March 22.

• Click here to hear Hart on “Forum”
• Read Hart’s “California Picks Generic Drug Company Civica to Produce Low-Cost Insulin”
• Click here to hear Hart on “State of California”
• Read Hart’s “Prescription for Housing? California Wants Medicaid to Cover 6 Months of Rent”

KHN South Carolina correspondent Lauren Sausser discussed prior authorization on WNHN’s “The Attitude With Arnie Arnesen” on March 21.

• Click here to hear Sausser on “The Attitude With Arnie Arnesen”
• Read Sausser’s “Feds Move to Rein In Prior Authorization, a System That Harms and Frustrates Patients”

KHN Montana legislative fellow Keely Larson discussed Montana’s vaccine exemption legislation on the Montana Free Press’ “The Session” on March 20.

• Click here to hear Larson on “The Session”
• Read Larson’s “Montana Considers New Wave of Legislation to Loosen Vaccination Rules”

KHN Midwest correspondent Bram Sable-Smith discussed insulin costs on NPR’s “Weekend Edition Saturday” on March 18.

• Click here to hear Sable-Smith on “Weekend Edition Saturday”
• Read Sable-Smith’s “Eli Lilly Slashed Insulin Prices. This Starts a Race to the Bottom” and “Armed With Hashtags, These Activists Made Insulin Prices a Presidential Talking Point”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Andrew Johnson lets his clients choose what music to play in the car.

As an employee of Family Outreach in Helena, Montana — an organization that assists developmentally disabled people — part of his workday involves driving around, picking up clients, and taking them to work or to run errands.

“What’s up, gangsta?” Johnson said as a client got in the car one day in March.

The pair fist-bumped and Johnson asked what type of music the client liked.

“Gangsta stuff,” came the response. Rap, mainly.

Snoop Dogg played in the background as Johnson and his client drove to McDonald’s, where Johnson helps his client work. The duo washed dishes for two hours in the back of the fast-food restaurant, where it smelled like maple syrup and sulfur.

About two weeks earlier, Johnson testified at a hearing at the Montana Capitol in support of a bill that seeks to raise health providers’ Medicaid reimbursement rates to levels aligned with the average cost of the care they provide. The bill is informed by a 2022 study that recommended benchmark rates after its authors found that Montana Medicaid providers like Family Outreach were being significantly underpaid.

“The provider rates need to be funded so people that work in this field or that work in adjacent fields can have solid ground, a place where you can build a career,” said Johnson, who makes $16.24 per hour in his position as an individual living specialist.

Republican Gov. Greg Gianforte and legislators agree that Medicaid rates need to rise; where they disagree is by how much. The proposals range from the bill Johnson testified for — Democratic Rep. Mary Caferro’s bill to raise rates to the study’s benchmarks — to Gianforte’s plan to fund 91% of that benchmark in 2024 and 86% in 2025.

Meanwhile, the Republicans leading the House Appropriations Committee, a key budget panel, are proposing an average increase of 92% for fiscal year 2024 and 97% in 2025.

Providers and leaders who work in behavioral health, developmental disability, long-term care, and family support services have attended the multiple hearings on rate adjustments, saying thanks for the proposed increases but asking for more. Many providers said the benchmark rates in the study are already outdated.

Providers across the United States say they haven’t seen significant reimbursement increases in more than a decade, according to Shawn Coughlin, president of the National Association for Behavioral Healthcare. Behavioral health can be an afterthought for policymakers, resulting in lower rates than for medical or surgical reimbursement, he said

Michael Barnett, associate professor of health policy and management at the Harvard T.H. Chan School of Public Health, said the supply of staff is inadequate to meet demand for behavioral health care across the U.S.

“And it’s not clear we’re going to meet any of that without paying people more,” Barnett said.

Some health providers have raised wages but still struggled to draw workers and keep the ones they’ve got. Family Outreach raised the wages of some direct care workers from $11 per hour to $12.20 per hour this year, and by more in places where the cost of living is higher, such as Bozeman. But even starting wages of $16 or $18 an hour aren’t attracting enough people to work there, Family Outreach Program Manager Tyler Tobol said.

“It’s a field that not a lot of people want to get into, so those that we can find, I think being able to pay a higher wage, a living wage, I think that would be the best benefit we get out of the rate increase,” Tobol said.

The organization went from 153 employees in 2020 to 128 today. The staffing shortage means employees now focus mainly on making sure clients have the basics — medications and meals — instead of providing additional community integration and activity support services.

At Florence Crittenton in Helena, where moms 18 to 35 with substance use disorders can live with their young kids while undergoing treatment, a mom entered the kitchen where women are taught life skills like learning to cook dinner. The woman told a staff member she was making juice for her child.

“This is where life happens,” said Daniel Champer, Florence Crittenton’s clinical and residential services director.

Executive Director Carrie Krepps said the organization’s two main sources of revenue are Medicaid reimbursements and fundraising. Fundraising, which used to account for 30% of revenue, now makes up between 60% and 70% of the money coming in.

“It’s the reason we’re still open,” Krepps said.

At any given time, an average of 15 to 18 of Florence Crittenton’s 50 staff positions are vacant. If Medicaid rates don’t increase, she said, the organization will have to consider if it can continue operating the recovery home at its current capacity.

“The full rates would just barely cover where we are today,” Krepps said of raising Medicaid reimbursement rates to benchmark levels.

In 2021, Florence Crittenton closed a youth maternity home for pregnant youths and young moms ages 12 to 15, the only home in the state that took teens under 16. Krepps said Florence Crittenton didn’t take Medicaid fees there because the rates were too low.

“It’s heartbreaking,” Champer said. “It’s like clockwork on Monday morning. I come in and see the inquiries and referrals about moms who need treatment and we can’t function at full capacity because we don’t have staff.”

Dennis Sulser, the CEO of Youth Dynamics, which provides home support, case management, and community-based psychiatric rehabilitation across the state, said his organization is paying its staff more than it can afford. Even with the rate increase, he said, they’d only break even.

In the past three years, Youth Dynamics has lost 56 full-time employees. The covid-19 pandemic made people realize they could find other jobs that paid more and even allowed them to stay home, Sulser said.

Two years ago, the entry-level pay for Youth Dynamics was $10.70 per hour, and it now averages $13.70. Still, staffing shortages led to the closure of a group home in Boulder and one in Billings, shrinking the organization’s capacity from 80 to 64 beds statewide.

Ashley Santos, program manager for the organization’s three remaining group homes in Boulder, said she is trying to figure out how to attract enough staff to reopen the closed home there. An increase in pay supported by the provider rate increase could give her flexibility to provide extra incentives, she said.

But it’s hard to attract workers when Hardee’s has a starting wage of $18 per hour compared with Youth Dynamics’ $16, she said. And fast-food jobs don’t come with the emotional toll of working with kids who have a severe emotional disturbance diagnosis like PTSD or depression.

Back in Helena, Johnson made his last stop of the day for Family Outreach. He sat next to a client on the couch at the house where the client lives with his mom. Johnson called the number on the back of his client’s debit card to see how much money was left on it before they went out to run errands.

Johnson and the client then headed to a local supermarket. Trips like these give his client a chance to interact with other people, while his mom gets some time to herself.

“You look nice,” Johnson said to the client as they got into the car, the folksy music of Dougie Poole, the choice of Johnson’s previous client, playing in the background.

Keely Larson is the KHN fellow for the UM Legislative News Service, a partnership of the University of Montana School of Journalism, the Montana Newspaper Association, and Kaiser Health News. Larson is a graduate student in environmental and natural resources journalism at the University of Montana.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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SACRAMENTO, Calif. — Gov. Gavin Newsom, whose administration is struggling to contain a worsening homelessness crisis despite record spending, is trying something bold: tapping federal health care funding to cover rent for homeless people and those at risk of losing their housing.

States are barred from using federal Medicaid dollars to pay directly for rent, but California’s governor is asking the administration of President Joe Biden, a fellow Democrat, to authorize a new program called “transitional rent,” which would provide up to six months of rent or temporary housing for low-income enrollees who rely on the state’s health care safety net — a new initiative in his arsenal of programs to fight and prevent homelessness.

“I’ve been talking to the president. We cannot do this alone,” Newsom told KHN.

The governor is pushing California’s version of Medicaid, called Medi-Cal, to fund experimental housing subsidies for homeless people, betting that it’s cheaper for taxpayers to cover rent than to allow people to fall into crisis or costly institutional care in hospitals, nursing homes, and jails. Early in his tenure, Newsom proclaimed that “doctors should be able to write prescriptions for housing the same way they do for insulin or antibiotics.”

But it’s a risky endeavor in a high-cost state where median rent is nearly $3,000 a month, and even higher in coastal regions, where most of California’s homeless people reside. Experts expect the Biden administration to scrutinize the plan to use health care money to pay rent; and also question its potential effectiveness in light of the state’s housing crisis.

“Part of the question is whether this is really Medicaid’s job,” said Vikki Wachino, who served as national Medicaid director in the Obama administration. “But there is a recognition that social factors like inadequate housing are driving health outcomes, and I think the federal government is open to developing approaches to try and address that.”

Bruce Alexander, a spokesperson for the Centers for Medicare & Medicaid Services, declined to say whether the federal government would approve California’s request. Yet, Biden’s Medicaid officials have approved similar experimental programs in Oregon and Arizona, and California is modeling its program after them.

California is home to an estimated 30% of the homeless people in the U.S., despite representing just 12% of the country’s overall population. And Newsom has acknowledged that the numbers are likely far greater than official homeless tallies show. Top health officials say that, to contain soaring safety-net spending and help homeless people get healthy, Medi-Cal has no choice but to combine social services with housing.

Statewide, 5% of Medi-Cal patients account for a staggering 44% of the program’s spending, according to state data. And many of the costliest patients lack stable housing: Nearly half of patients experiencing homelessness visited the emergency room four times or more in 2019 and were more likely than other low-income adults to be admitted to the hospital, and a large majority of visits were covered by Medi-Cal, according to the Public Policy Institute of California.

“What we have today doesn’t work,” said Dr. Mark Ghaly, secretary of the California Health and Human Services Agency, explaining his argument that housing is a critical component of health care. “Why do we have to wait so long for people to be so sick?”

The federal government has already approved a massive social experiment in California, known as CalAIM, which is transforming Medi-Cal. Over five years, the initiative is expected to pour $12 billion into new Medi-Cal services delivered outside of traditional health care. In communities across the state, it is already funding services for some low-income patients, including paying rental security deposits for homeless people and those facing eviction; delivering prepared healthy meals for people with diabetes; and helping formerly incarcerated people find jobs.

The transitional rent program would add another service to those already available, though only a sliver of the 15.4 million Medi-Cal enrollees actually receive those new and expensive social services.

Rent payments could begin as soon as 2025 and cost roughly $117 million per year once fully implemented. And while state officials say anyone who is homeless or at risk of becoming homeless would be eligible, not everyone who qualifies will receive new services due to capacity limits. Among those who stand to benefit are nearly 11,000 people already enrolled in Medi-Cal housing services.

“The ongoing conversation is how do we convince the federal government that housing is a health care issue,” said Mari Cantwell, who served as Medi-Cal director from 2015 to 2020. “You have to convince them that you’re going to save money because you’re not going to have as many people showing up at the emergency room and in long-term hospitalizations.”

Health care experiments in California and around the country that funded housing supports have demonstrated early success in reducing costs and making people healthier. But while some programs paid for housing security deposits or participants’ first month of rent, none directly covered rent for an extended period.

“Without that foundational support, we are playing in the margins,” Newsom said.

State health officials argue that paying for six months of rent will be even more successful at reducing health care costs and improving enrollees’ health, but experts say that, to work, the initiative must have strict accountability and be bundled with an array of social services.

In a precursor to the state’s current initiative, California experimented with a mix of housing assistance programs and social services through its “Whole Person Care” pilot program. Nadereh Pourat, of the UCLA Center for Health Policy Research, evaluated the program for the state concluding that local trials reduced emergency visits and hospitalizations, saving an average of $383 per Medi-Cal beneficiary per year — a meager amount compared with the program’s cost.

Over five years, the state spent $3.6 billion serving about 250,000 patients enrolled in local experiments, Pourat said.

And a randomized control trial in Santa Clara County that provided supportive housing for homeless people showed reductions in psychiatric emergency room visits and improvements in care. “Lives stabilized and we saw a huge uptick in substance use care and mental health care, the things that everybody wants people to use to get healthier,” said Dr. Margot Kushel, director of the University of California-San Francisco’s Center for Vulnerable Populations at Zuckerberg San Francisco General Hospital and Trauma Center, who worked on the study.

But insurers implementing the broader Medi-Cal initiative say they are skeptical that spending health care money on housing will save the system money. And health care experts say that, while six months of rent can be a bridge while people wait for permanent housing, there’s a bigger obstacle: California’s affordable housing shortage.

“We can design incredible Medicaid policies to alleviate homelessness and pay for all the necessary supportive services, but without the adequate housing, frankly, it’s not going to work,” Kushel said.

Newsom acknowledges that criticism. “The crisis of homelessness will never be solved without first solving the crisis of housing,” he said last week, arguing California should plow more money into housing for homeless people with severe mental health conditions or addiction disorders.

He will ask the legislature to put before voters a 2024 ballot initiative that would infuse California’s mental health system with at least 6,000 new treatment beds and supportive housing units for people struggling with mental health and addiction disorders, many of whom are homeless. The proposed bond measure would generate from $3 billion to $5 billion for psychiatric housing and treatment villages aimed at serving more than 10,000 additional people a year. The initiative also would ask voters to set aside at least $1 billion a year for supportive housing from an existing tax on California millionaires that funds local mental health programs. 

“People who are struggling with these issues, especially those who are on the streets or in other vulnerable conditions, will have more resources to get the help they need,” Newsom said.

For transitional rent, six months of payments would be available for select high-need residents enrolled in Medi-Cal, particularly those who are homeless or at risk of becoming homeless — and those transitioning from more costly institutions such as mental health crisis centers, jails and prisons, and foster care. Medi-Cal patients at risk of inpatient hospitalization or who frequent the emergency room would also be eligible.

“It’s a pretty big challenge; I’m not going to lie,” said Jacey Cooper, the Medi-Cal director. “But we know that people experiencing homelessness cycle in and out of emergency rooms, so we have a real role to play in both preventing and ending homelessness.”

Public health experts say the problem will continue to explode without creative thinking about how to fund housing in health care, but they warn the state must be wary of potential abuses of the program.

“It has to be designed carefully because, unfortunately, there are always people looking to game the system,” said Dr. Tony Iton, a public health expert who is now a senior vice president at the California Endowment. “Decisions must be made by clinicians — not housing organizations just looking for another source of revenue.”

For Stephen Morton, who lives in the Orange County community of Laguna Woods, the journey from homelessness into permanent housing illustrates the amount of public spending it can take for the effort to pay off.

Morton, 60, bounced between shelters and his car for nearly two years and racked up extraordinary Medi-Cal costs due to prolonged hospitalizations and repeated emergency room trips to treat chronic heart disease, asthma, and diabetes.

Medi-Cal covered Morton’s open-heart surgery and hospital stays, which lasted weeks. He landed temporary housing through a state-sponsored program called Project Roomkey before getting permanent housing through a federal low-income housing voucher — an ongoing benefit that covers all but $50 of his rent.

Since getting his apartment, Morton said, he’s been able to stop taking one diabetes medication and lose weight. He attributes improvements in his blood sugar levels to his housing and the healthy, home-delivered meals he receives via Medi-Cal.

“It’s usually scrambled eggs for breakfast and the fish menu for dinner. I’m shocked it’s so good,” Morton said. “Now I have a microwave and I’m indoors. I’m so grateful and so much healthier.”

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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KHN correspondent Rachana Pradhan untangled Medicaid unwinding on PBS’ “PBS News Weekend” on March 11.

• Click here to watch Pradhan on “PBS News Weekend”
• Read Pradhan’s “Why Millions on Medicaid Are at Risk of Losing Coverage in the Months Ahead“

KHN senior editor Andy Miller discussed virtual visits on WUGA’s “The Georgia Health Report” on March 10.

• Click here to hear Miller on “The Georgia Health Report”
• Read “Virtual or In Person: Which Kind of Doctor’s Visit Is Better, And When It Matters” by KHN contributing writer Michelle Andrews

KHN rural editor and correspondent Tony Leys discussed how Medicaid clawbacks drain patients’ estates after they die on NPR’s “Weekend Edition Sunday” on March 5.

• Click here to hear Leys on “Weekend Edition Sunday”
• Read Leys’ “After People on Medicaid Die, Some States Aggressively Seek Repayment From Their Estates“

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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The federal covid-19 pandemic protections that have largely prohibited states from dropping anyone from Medicaid since 2020 helped millions of low-income Americans retain health insurance coverage — even if they no longer qualified — and brought the U.S. uninsured rate to a record low.

It also led to a windfall for the health plans that states pay to oversee care of most Medicaid enrollees. These plans — many run by insurance titans including UnitedHealthcare, Centene, and Aetna — have seen their revenue surge by billions as their membership soared by millions.

With states poised to start disenrolling Medicaid enrollees in April who no longer qualify, the insurers hope to retain enrollees who are still eligible and capture those who lose coverage with the Affordable Care Act marketplace plans.

Except for the enrollees themselves, for whom losing coverage could restrict access to care and leave them vulnerable to large medical bills, no one has more at stake than these insurers. The plans have a strong financial incentive to keep their members enrolled because states pay them per member, per month: The more people they cover, the more money they get.

The Biden administration estimates that 15 million of the more than 91 million Medicaid enrollees will fall off the rolls, nearly half because their income exceeds program limits and the rest because they fail to complete the reenrollment paperwork.

Of the people losing eligibility, about two-thirds will enroll in a workplace health plan, health insurers predict, and the other third will be evenly divided between ACA plans and being left uninsured.

The financial ramifications of the so-called Medicaid unwinding for health plans are huge, said Gary Taylor, a securities analyst with Cowen and Co. “It’s billions of dollars for these guys,” he said of the five largest Medicaid health plans: Centene, UnitedHealthcare, Aetna, Elevance Health (formerly Anthem), and Molina Healthcare.

Investor-owned companies earn pretax profit margins of about 3% on average from Medicaid managed care, slightly below what they make on ACA marketplace business, he said. So moving members to an ACA plan could boost the profits of these companies.

State Medicaid officials say they need the health plans’ help during the unwinding to avert a big jump in uninsured residents. The health insurers could help those who lose Medicaid coverage find other sources, such as the government-subsidized plans offered on the ACA marketplaces.

“In Nevada, our managed-care plans are motivated to keep members enrolled,” Sandie Ruybalid, deputy administrator of the Nevada state health department division that oversees Medicaid, told a congressional advisory board in January. “Our managed-care plans are innovative, and we lean on them to help us through this.”

Ruybalid said her state doesn’t have large marketing budgets, as the giant insurers do, to educate enrollees about how to stay enrolled.

One way some companies hope to make up for their lost Medicaid revenue will be by adding customers to their ACA marketplace plans.

Centene — the nation’s largest Medicaid health insurer, with 16 million members — expects to lose over 2 million enrollees during the unwinding. But it expects between 200,000 and 300,000 people who lose Medicaid coverage to sign up for a Centene ACA marketplace plan, CEO Sarah London told investment analysts in February.

In 15 of the 25 states where St. Louis-based Centene offers both Medicaid and marketplace plans, the company will reach out to members about their ACA coverage options.

Although state Medicaid programs for years have used private insurers to control their costs and improve enrollees’ health, enlisting the companies for eligibility assistance is new.

Health plans are often in a better position than state Medicaid agencies to connect with enrollees because they are more likely to have their current addresses and contact information, state officials said.

“We don’t have direct contact with our members all the time, and health plans have more interaction with them,” said Chris Underwood, chief administrative officer for the Colorado Department of Health Care Policy and Financing, the state’s Medicaid agency. Since the state contracts with health plans to help enrollees find doctors or assist with other care needs, it’s not a big step to have the plans help with eligibility, he said.

Colorado health officials will do the initial outreach to Medicaid enrollees and will count on health plans to follow up with emails, calls, and texts to those who don’t respond, Underwood said. Health plans will also guide enrollees no longer eligible for Medicaid to the state’s ACA marketplace, which will reach out to help them sign up.

AmeriHealth Caritas, which has about 2.8 million Medicaid enrollees nationwide, will target community organizations such as churches, homeless shelters, and food banks to deliver the message about the need to reenroll. It will also email, text, and call enrollees to remind them, said Courtnay Thompson, market president for AmeriHealth Caritas’ South Carolina plan, Select Health.

She said strategies to reach enrollees will vary by state. Some will try to reassess the eligibility of all members in six months, while others will take more than a year. Some states will share with the plans their enrollees’ enrollment status before they lose coverage, and others won’t.

UnitedHealthcare, which has about 8 million Medicaid enrollees, said its call center representatives will remind members to reenroll in Medicaid. The company will also put information about the need to reenroll at its network pharmacies and use online advertising such as on Facebook and Google. And it will work with its medical providers to make sure members understand the changes.

“We are very aware of the historical challenges that individuals face when reenrolling,” said Tim Spilker, CEO of UnitedHealthcare’s Community & State unit. “We are optimistic with the magnitude of the outreach that we will help increase awareness among individuals about what they need to do.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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When Matthew Boyd was released from a Georgia state prison in December 2020, officials sent him home without medicines he uses to manage chronic heart and lung conditions and high blood pressure, he said.

Less than a month later, he spent eight days in an intensive care unit, the first of more than 40 hospital stays since. These days, he can barely get out of bed in his home south of Atlanta.

“It makes my life so miserable,” said Boyd, 44, who has chronic obstructive pulmonary disease. He told his story to KHN over email and text because he sometimes has trouble talking without losing his breath.

While Medicaid is generally prohibited from paying for the services people receive inside a prison or jail, the Biden administration opened the door for the federal program to cover care not long before a person is released, to help them better manage their health conditions during the transition. In February, the administration announced that states could also use Medicaid to pay for substance abuse treatment in state jails and prisons. Congressional efforts to reactivate Medicaid before inmates’ release nationwide have so far failed.

And across much of the South, where many states have not expanded Medicaid, reentry services that connect people like Boyd to health care resources are often minimal or nonexistent.

More than 600,000 people are released from state and federal prisons every year in the U.S. and the majority have health conditions. A 2019 judicial decision suggested that people who are incarcerated have a constitutional right to adequate medical discharge planning before their release, including supplies of medication or prescriptions. But it’s far from clear whether states are required to do so.

In Georgia, correctional facilities are supposed to create a discharge plan that includes making medical appointments and supplying medications. Joan Heath, director of the public affairs office at the Georgia Department of Corrections, didn’t respond to questions about why the official policy wasn’t followed in Boyd’s case.

Despite official policies, people regularly leave prison or jail lacking medications, medical records, a provider appointment, or health insurance. About 84% of men and 92% of women who were incarcerated had a physical or mental health condition or substance use disorder, according to a sample of people interviewed before and after their release from prison by the Urban Institute, a nonprofit that researches issues around equity.

Without timely care, formerly incarcerated patients are more likely to develop a health crisis and turn to costly emergency rooms. Or they experience a mental health episode or commit crimes related to substance use disorder that lands them back in prison or jail.

“There is no bridge,” said Stephanie Jones-Heath, CEO of Diversity Health Center, a federally qualified health center in southeastern Georgia. By the time formerly incarcerated patients come to the center, their health conditions are uncontrolled and they have no medical records, she said. “We have to start all over because we have no continuity of care,” she said.

The United States has one of the highest rates of incarceration in the world. Conditions such as the use of solitary confinement, limited health care access, high stress, and poor-quality food can also create or exacerbate illness.

“This is the sickest population in the country,” said Dr. Marc Stern, a University of Washington public health faculty member who previously worked for the state’s Department of Corrections. Stern co-authored one of the few studies on the topic. That 2007 study found people who were incarcerated were 3.5 times as likely to die as other state residents — many deaths took place within the first two weeks of a person’s release.

In January, California became the first state to obtain a partial waiver allowing incarcerated people to get services through Medicaid 90 days before release. More than a dozen other states are pursuing similar waivers. They argue that more seamless care will reduce deaths from overdose — the leading killer of people leaving prison — improve health outcomes, and save money by keeping patients out of the emergency room.

In Georgia, even basic discharge planning can be rare, said Craig Burnes, a certified peer-support specialist for incarcerated people. In 2014 he was released from state prison after a nearly 15-year stay with a $20 debit card that mistakenly hadn’t been activated, he said. Burnes, who has bipolar and post-traumatic stress disorders, depression, and anxiety, said he found his own way to a safety-net foundation for mental illness treatment near his home in Dalton.

Most of the people Burnes works with have no idea how to access care. Often, they lack family support and stable housing, struggle with mental health or substance abuse issues, and lack the skills to navigate the bureaucracy that comes with reclaiming their life after prison.

“It’s a terrible circle that has no beginning,” he said. Burnes regularly sends people to the emergency room so they can get medications and a referral to a free clinic.

Stephen McCary, 40, couldn’t find treatment for a heroin addiction after he was released from an Alabama prison in 2011.

In May 2019, an addiction recovery facility told him that funding to pay for his care was not immediately available. McCary, who also struggled with periodic homelessness, never followed up. He suffered an overdose, was re-arrested for a pharmacy theft, and is now serving another prison sentence.

“None of these crimes I would have committed if I had somewhere to go,” he said in a phone call from Ventress Correctional Facility in Alabama.

Alabama has not expanded Medicaid, which could have helped McCary secure care after his release. In Connecticut, a study found that when people are connected with primary care after incarceration they are less likely to be hospitalized or to be re-incarcerated, which can save the state money.

“We have to look at the big picture,” said Dr. Shira Shavit, who is a clinical professor of family and community medicine at the University of California-San Francisco and executive director of the Transitions Clinic Network, and worked on the studies. “If we invest in Medicaid, we can save money in the prison system.”

Black people, who are more likely than the general population to be incarcerated and lack insurance coverage, are disproportionately affected by the absence of post-incarceration health services.

One reason people fall through the cracks is because no one agency takes responsibility for the problem, said Dr. Evan Ashkin, a professor of family medicine at the University of North Carolina-Chapel Hill and director of the North Carolina Formerly Incarcerated Transition Program, which helps former inmates obtain health care. Health systems often don’t differentiate the needs of people who were imprisoned from others lacking insurance, he said. Justice systems don’t have budgets or a mandate to care for people once they leave custody. About 90% of patients in the program’s clinics lack insurance. North Carolina has not yet expanded Medicaid, though lawmakers recently struck a deal to do so.

A key piece of the new California waiver is the ability for providers to get reimbursed to coordinate care, which is especially important for people coming out of prison, Shavit said. “All of their basic needs are up in the air at once, and often health care takes a back seat,” she said.

Medicaid expansion along with a program for enrolling patients in Medicaid just before release has helped people coming out of Louisiana’s notoriously grim prison health care system, said Dr. Anjali Niyogi, a Tulane University School of Medicine professor who founded a clinic serving formerly incarcerated people. Still, insurance coverage alone isn’t enough to compensate for the lack of care people receive while incarcerated, she said.

Anthony Hingle Jr. never got the results of a biopsy that took place just days before he was released from Louisiana State Penitentiary in Angola in 2021 after 32 years of incarceration.

Hingle, 52, learned he had prostate cancer after calling the New Orleans hospital on his own to request the biopsy results. Even though he had Medicaid coverage, he had to wait several more months for insurance from his job to kick in before he could afford treatment and surgery to remove his prostate. Hingle, who works as an office assistant at Voice of the Experienced, a nonprofit that advocates for incarcerated and formerly incarcerated people, wonders how his life might have unfolded if he had been diagnosed sooner.

Without a prostate, “having children with my wife, that’s gone,” he said.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Less than two years after opening a state-of-the-art $26 million hospital in Leadville, Colorado, St. Vincent Health nearly ran out of money.

Hospital officials said in early December that without a cash infusion they would be unable to pay their bills or meet payroll by the end of the week.

The eight-bed rural hospital had turned a $2.2 million profit in 2021, but the windfall was largely a mirage. Pandemic relief payments masked problems in the way the hospital billed for services and collected payments.

In 2022, St. Vincent lost nearly $2.3 million. It was at risk of closing and leaving the 7,400 residents of Lake County without a hospital or immediate emergency care. A $480,000 bailout from the county and an advance of more than $1 million from the state kept the doors open and the lights on.

Since 2010, 145 rural hospitals across the U.S. have closed, according to the Cecil G. Sheps Center for Health Services Research at the University of North Carolina. But covid-19 relief measures slowed that trend. Only 10 rural hospitals shut down in 2021 and 2022 combined, after a record 19 in 2020. Two rural hospitals have closed already this year.

Now that those covid funds are gone, many challenges that threatened rural hospitals before the pandemic have resurfaced. Industry analysts warn that rural facilities, like St. Vincent Health, are once again on shaky ground.

Jeffrey Johnson, a partner with the consulting firm Wipfli, said he has been warning hospital boards during audits not to overestimate their financial position coming out of the pandemic.

He said the influx of cash aid gave rural hospital operators a “false sense of reality.”

No rural hospitals have closed in Colorado in the past decade, but 16 are operating in the red, according to Michelle Mills, CEO of the nonprofit Colorado Rural Health Center, the State Office of Rural Health. Last year, Delta County voters saved a rural hospital owned by Delta Health by passing a sales tax ballot measure to help support the facility. And state legislators are fast-tracking a $5 million payment to stabilize Denver Health, an urban safety-net hospital.

John Gardner took over as interim CEO of St. Vincent after the previous CEO resigned last year. He said the hospital’s cash crunch stemmed from decisions to spend covid funds on equipment instead of operating costs.

St. Vincent is classified by Medicare as a critical access hospital, so the federal program reimburses it based on its costs. Medicare advanced payments to hospitals in 2020, but then recouped the money by reducing payments in 2022. St. Vincent had to repay $1.2 million at the same time the hospital faced higher spending, a growing accounts-payable obligation, and falling revenue. The hospital, Gardner said, had mismanaged its billing process, hadn’t updated its prices since 2018, and failed to credential new clinicians with insurance plans.

Meanwhile, the hospital began adding services, including behavioral health, home health and hospice, and genetic testing, which came with high startup costs and additional employees.

“Some businesses the hospital was looking at getting into were beyond the normal menu of critical access hospitals,” Gardner said. “I think they lost their focus. There were just some bad decisions made.”

Once the hospital’s upside-down finances became clear, those services were dropped, and the hospital reduced staffing from 145 employees to 98.

Additionally, St. Vincent had purchased an accounting system designed for hospitals but had trouble getting it to work.

The accounting problems meant the hospital was late completing its 2021 audit and hadn’t provided its board with monthly financial updates. Gardner said the hospital believes it may have underreported its costs to Medicare, and so it is updating its reports in hopes of securing additional revenue.

The hospital also ran into difficulty with equipment it purchased to perform colonoscopies. St. Vincent is believed to be the highest-elevation hospital in the U.S., at more than 10,150 feet, and the equipment used to verify that the scopes weren’t leaking did not work at that altitude.

“We’re peeling the onion, trying to find out what are the things that went wrong and then fixing them, so it’s hopefully a ship that’s running fairly smoothly,” Gardner said.

Soon Gardner will hand off operations to a management company charged with getting the hospital back on track and hiring new leadership. But officials expect it could take two to three years to get the hospital on solid ground.

Some of those challenges are unique to St. Vincent, but many are not. According to the Chartis Center for Rural Health, a consulting and research firm, the average rural hospital operates with a razor-thin 1.8% margin, leaving little room for error.

Rural hospitals operating in states that have expanded Medicaid under the Affordable Care Act, as Colorado did, average a 2.6% margin, but rural hospitals in the 12 non-expansion states have a margin of minus 0.5%.

Chartis calculated that 43% of rural hospitals are operating in the red, down slightly from 45% last year. Michael Topchik, who heads the Chartis Center for Rural Health, said the rate was only 33% 10 years ago.

A hospital should be able to sustain operations with the income from patient care, he said. Additional payments — such as provider relief funds, revenues from tax levies, or other state or federal funds — should be set aside for the capital expenditures needed to keep hospitals up to date.

“That’s not what we see,” Topchik said, adding that hospitals use that supplemental income to pay salaries and keep the lights on.

Bob Morasko, CEO of Heart of the Rockies Regional Medical Center in Salida, said a change in the way Colorado’s Medicaid program pays hospitals has hurt rural facilities.

Several years ago, the program shifted from a cost-based approach, similar to Medicare’s, to one that pays per patient visit. He said a rural hospital has to staff its ER every night with at least a doctor, a nurse, and X-ray and laboratory technicians.

“If you’re paid on an encounter and you have very low volumes, you can’t cover your costs,” he said. “Some nights, you might get only one or two patients.”

Hospitals also struggle to recruit staff to rural areas and often have to pay higher salaries than they can afford. When they can’t recruit, they must pay even higher wages for temporary travel nurses or doctors. And the shift to an encounter-based system, Morasko said, also complicated coding for billing , leading to difficulties in hiring competent billing staff.

On top of that, inflation has meant hospitals pay more for goods and services, said Mills, from the state’s rural health center.

“Critical access hospitals and rural health clinics were established to provide care, not to be a moneymaker in the community,” she said.

Even if rural hospitals manage to stay open, their financial weakness can affect patients in other ways. Chartis found the number of rural hospitals eliminating obstetrics rose from 198 in 2019 to 217 last year, and the number no longer offering chemotherapy grew from 311 to 353.

“These were two we were able to track with large data sets, but it’s across the board,” Topchik said. “You don’t have to close to be weak.”

Back in Leadville, Gardner said financial lifelines thrown to the hospital have stabilized its financial situation for now, and he doesn’t anticipate needing to ask the county or state for more money.

“It gives us the cushion that we need to fix all the other things,” he said. “It’s not perfect, but I see light at the end of the tunnel.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Midwest KHN correspondent Bram Sable-Smith discussed the Eli Lilly news on insulin prices on “PBS NewsHour” and insulin prices on Slate’s “What Next” on March 1.

• Click here to watch Sable-Smith on “PBS NewsHour”
• Click here to hear Sable-Smith on “What Next”
• Read Sable-Smith and Samantha Young’s “Eli Lilly Slashed Insulin Prices. This Starts a Race to the Bottom.“
• Read Sable-Smith’s “Armed With Hashtags, These Activists Made Insulin Prices a Presidential Talking Point“

KHN contributor Andy Miller discussed Georgia’s legislative wrap-up including Medicaid work requirements on Georgia Public Broadcasting’s “Lawmakers” on Feb. 28. He also discussed health care for foster children on WUGA’s “The Georgia Health Report” on Feb. 3.

• Click here to hear Miller on “Lawmakers”
• Read Miller’s “Path Cleared for Georgia to Launch Work Requirements for Medicaid“
• Click here to hear Miller on “The Georgia Health Report”
• Read Miller’s “Unmet Needs: Critics Cite Failures in Health Care for Vulnerable Foster Children“

Senior KHN correspondent Julie Appleby discussed how the end of the public health emergency will affect costs for covid-19 vaccines, treatments, and masks on KMOX’s “Health Matters” on Feb. 25.

• Click here to hear Appleby on “Health Matters”
• Read Appleby’s “Era of ‘Free’ Covid Vaccines, Test Kits, and Treatments Is Ending. Who Will Pay the Tab Now?“

KHN correspondent Cara Anthony discussed the youngest victims of gun violence and those who dig their graves on America’s Heroes Group on Feb. 25.

• Click here to hear Anthony on “America’s Heroes Group”
• Read Anthony’s “When Gun Violence Ends Young Lives, These Men Prepare the Graves“

KHN contributor Eric Berger discussed distracted driving laws and why Missouri still doesn’t have one on St. Louis Public Radio’s “St. Louis on the Air” on Feb 24.

• Click here to hear Berger on “St. Louis on the Air”
• Read Berger’s “Why Two States Remain Holdouts on Distracted Driving Laws“

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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The Host Julie Rovner KHN @jrovner Read Julie's stories. Julie Rovner is chief Washington correspondent and host of KHN’s 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.

With Medicare and Social Security apparently off the table for federal budget cuts, the focus has turned to Medicaid, the federal-state health program for those with low incomes. President Joe Biden has made it clear he wants to protect the program, along with the Affordable Care Act, but Republicans will likely propose cuts to both when they present a proposed budget in the next several weeks.

Meanwhile, confusion over abortion restrictions continues, particularly at the FDA. One lawsuit in Texas calls for a federal judge to temporarily halt distribution of the abortion pill mifepristone. A separate suit, though, asks a different federal judge to temporarily make the drug easier to get, by removing some of the FDA’s safety restrictions.

This week’s panelists are Julie Rovner of Kaiser Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of STAT News, and Lauren Weber of The Washington Post.

Panelists Rachel Cohrs Stat News @rachelcohrs Read Rachel'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:

• States are working to review Medicaid eligibility for millions of people as pandemic-era coverage rules lapse at the end of March, amid fears that many Americans kicked off Medicaid who are eligible for free or near-free coverage under the ACA won’t know their options and will go uninsured.
• Biden promised this week to stop Republicans from “gutting” Medicaid and the ACA. But not all Republicans are on board with cuts to Medicaid. Between the party’s narrow majority in the House and the fact that Medicaid pays for nursing homes for many seniors, cutting the program is a politically dicey move.
• A national group that pushed the use of ivermectin to treat covid-19 is now hyping the drug as a treatment for flu and RSV — despite a lack of clinical evidence to support their claims that it is effective against any of those illnesses. Nonetheless, there is a movement of people, many of them doctors, who believe ivermectin works.
• In reproductive health news, a federal judge recently ruled that a Texas law cannot be used to prosecute groups that help women travel out of state to obtain abortions. And the abortion issue has highlighted the role of attorneys general around the country — politicizing a formerly nonpartisan state post. –And Eli Lilly announced plans to cut the price of some insulin products and cap out-of-pocket costs, though their reasons may not be completely altruistic: An expert pointed out that a change to Medicaid rebates next year means drugmakers soon will have to pay the government every time a patient fills a prescription for insulin, meaning Eli Lilly’s plan could save the company money.

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

Julie Rovner: The New York Times’ “A Drug Company Exploited a Safety Requirement to Make Money,” by Rebecca Robbins.

Alice Miranda Ollstein: The New York Times’ “Alone and Exploited, Migrant Children Work Brutal Jobs Across the U.S.,” by Hannah Dreier.

Rachel Cohrs: STAT News’ “Nonprofit Hospitals Are Failing Americans. Their Boards May Be a Reason Why,” by Sanjay Kishore and Suhas Gondi.

Lauren Weber: KHN and CBS News’ “This Dental Device Was Sold to Fix Patients’ Jaws. Lawsuits Claim It Wrecked Their Teeth,” by Brett Kelman and Anna Werner.

Also mentioned in this week’s podcast:

• Politico’s “Why One State’s Plan to Unwind a Covid-Era Medicaid Rule Is Raising Red Flags,” by Megan Messerly.
• The Washington Post’s “Doctors Who Touted Ivermectin as Covid Fix Now Pushing It for Flu, RSV,” by Lauren Weber.
• NPR’s “To Safeguard Healthy Twins in Utero, She Had to ‘Escape’ Texas for Abortion Procedure,” by Selena Simmons-Duffin.
• The Daily Beast’s “Tennessee Abortion Ban a ‘Nightmare’ for Woman With Doomed Pregnancy,” by Michael Daly.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to KHN’s What the Health? on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Newborns. Former inmates. College students. Expectant moms. People with disabilities. Foster kids. Homeless people. Single dads.

Your neighbor. Your co-worker.

You.

California’s Medicaid program, called Medi-Cal, serves a whopping 15.4 million people, offering care from cradle to grave: Half of all births are covered by Medi-Cal, as are more than half of all stays in nursing homes.

Everything about Medi-Cal is massive, from its upcoming fiscal year budget of $139 billion to the expansive list of benefits and services it offers. The way the program works — or doesn’t — could spell life or death for many enrollees.

“It’s critical, from the single pregnant mom, to the extremely frail elderly population that needs a nursing home,” said Jennifer Kent, former director of the state Department of Health Care Services, which administers Medi-Cal. “If it weren’t for Medi-Cal, so many people would either be dead or would be severely compromised.”

In a new series, California Healthline will shed light on Medi-Cal’s successes and failures through the experiences of its enrollees. They include Stephanie Lammers, who can’t get her troubling abdominal symptoms checked at a clinic 50 miles from her small Calaveras County town because the transportation Medi-Cal is supposed to provide isn’t trustworthy; Carolina Morga Tapia, a Fresno woman who credits Medi-Cal with helping her have five healthy children; and Lucas Moreno Ramirez, a Los Angeles County man with stage 4 lung cancer who had to fight to keep his treatment going.

Medi-Cal is at a critical juncture as it attempts to serve the needs of a diverse patient population with a dizzying array of medical needs — from childhood vaccinations and cancer screenings to state-of-the-art care for rare genetic disorders. Roughly half of enrollees are Hispanic, and, next year, California will become the first state to expand eligibility to all immigrants who qualify, regardless of their legal status.

Medi-Cal is also undertaking several new initiatives that aim to save taxpayer money and improve quality. State officials are demanding that the 23 health insurers that serve most Medi-Cal patients provide better care — or face significant penalties, including potential expulsion from the program.

The state is also adding innovative social services that fall outside the traditional realm of medicine, including helping some enrollees pay for rent and buy groceries.

“People are watching California,” said Cindy Mann, who served as federal Medicaid director under former President Barack Obama. “What the state is doing is ambitious and very aggressive. It makes a significant mark on health care and health policy, not just because of the size and breadth of its program, but by being very comprehensive.”

But only a sliver of enrollees will get the new social services, even as many patients struggle to obtain basic care or get in to see their doctors. In reality, the type of care you get in Medi-Cal depends on where you live and which insurer provides your benefits.

That means the program is working for some, but failing for many others.

If you are in Medi-Cal, we would like to hear from you, whether you live in a big city or a rural region, regardless of your age, race, or ethnicity, and whatever your medical, dental, or mental health condition. Have you had difficulty seeing the right doctor for what ails you, even to the point of putting your life at risk? Or did Medi-Cal provide good care, perhaps sparing you serious harm or disability? Either way, please consider sharing your experience with us.

Here are snapshots of patients who have used the program at a critical time in their life.

‘I Just Don’t Go to the Doctor Anymore’

When Stephanie Lammers leans over to put on her shoes, it feels as if she’s squishing something inside her abdomen, she said.

Lammers, 53, has been suffering from frequent bouts of nausea, pain, and bloating for six months.

Her gastroenterologist wants to perform diagnostic procedures, including a colonoscopy and, if anything shows up, a biopsy. But Lammers, who lives in a motel with her boyfriend and teenage daughter in the Gold Rush town of San Andreas, doesn’t have a working car and can’t readily get to the clinic — which is 50 miles away.

For Lammers, like many Medi-Cal enrollees who live in rural areas, lack of transportation is a major impediment to obtaining care. The problem is particularly acute for patients who need to see specialists.

Lammers’ dermatologist and eye doctor are over an hour away from San Andreas, the county seat of Calaveras County, about 125 miles northeast of San Francisco. She isn’t seeing a neurologist, despite a series of mini-strokes and stress-related seizures. And she hasn’t been to a podiatrist in two years, even though her toes are twisted over one another and hang down, causing her to trip. She’s often in excruciating pain when she walks.

Medi-Cal is supposed to provide free transportation to enrollees who can’t otherwise get to their appointments.

But Lammers, whose health plan is California Health & Wellness, owned by Centene, the nation’s largest commercial Medicaid insurer, stopped using its ride service nearly a year ago, after she missed dozens of appointments because drivers just didn’t show up, she said. She was getting threatening letters from doctors’ offices over the no-shows.

Once she had to hitchhike more than 30 miles home from a counseling appointment. On other occasions, Lammers said, she did not receive the reimbursement she was owed for arranging her own rides.

“I just don’t go to the doctor anymore,” Lammers said. “If I go to the doctor, my boyfriend has to take the day off work, and if he takes the day off work, we have no money.”

During the last three months of 2022, Lammers canceled five appointments she had scheduled for the diagnostic abdominal procedures because her boyfriend had to work each time and couldn’t take her. She finally stopped rescheduling.

California Health & Wellness contracts with Modivcare, a Denver-based medical transportation company that is no stranger to patient complaints and lawsuits.

Before she gave up on the ride service, Lammers said, she would call California Health & Wellness to try to resolve the issue, only to be told that Modivcare was a separate company. “I’m like, ‘If you guys hired them and put them in charge of transportation, who oversees their screw-ups?’”

Courtney Schwyzer, a member of a legal aid team representing Lammers on various Medi-Cal matters, said the failure of medical ride services is a systemic problem. In late February, Schwyzer and her fellow attorneys filed a petition in court that she hopes will force the state Department of Health Care Services to address the problem.

California Health & Wellness spokesperson Darrel Ng said the company monitors the quality of its contractors, but a shortage of transportation providers in rural areas “has created unique challenges.”

Modivcare provides more than 4 million rides for Medi-Cal recipients annually, and more than 99% are without complaint, said Melody Lai, a company spokesperson.

Lammers, who is unemployed and trying to start a custom craft business called Stuff by Steph, said doctors have warned her that if she doesn’t reduce her stress level, it could shorten her life. But arranging medical care is the most stressful thing in her life right now, so she doesn’t try anymore.

“In order to keep from dying, I have to not go to the doctor,” she said.

‘It’s a Blessing’

Medi-Cal helped save the life of Carolina Morga Tapia, a 30-year-old, full-time mother of five who lives with her family amid almond groves in an agricultural enclave of Fresno.

Nine years ago, a bacterial infection triggered premature labor during the 25th week of her second pregnancy, and Morga Tapia almost died. She spiked a fever, bled profusely, and needed immediate transfusions and emergency surgery. After several days in critical care, she fully recovered.

But the doctors could not stop the premature birth, and her baby came out weighing just 1 pound. She and her husband, David Nuñez, named her Milagros Guadalupe, and she died four days later, on Sept. 13, 2013 — a Friday.

In each of her subsequent pregnancies, Medi-Cal paid for Morga Tapia to get shots of synthetic progesterone, intended to prevent another preterm birth. Those shots — one a week for about 20 weeks — can cost an average of more than $10,000 per pregnancy.

Morga Tapia and Nuñez, a construction worker, signed up for Medi-Cal when she was pregnant with her first child more than a decade ago. They’ve been on the same Anthem Blue Cross Medi-Cal plan ever since.

“It saves a lot of money, and it’s a blessing to have that extra help.”

Morga Tapia

The plan paid for prenatal care through all six of Morga Tapia’s pregnancies, and it has provided all the medical and dental care the family needs, she said.

“Without Medi-Cal, we would have to be paying for all of our children,” said Morga Tapia. “It saves a lot of money, and it’s a blessing to have that extra help.”

Her children, four girls and a boy, range in age from 1 to 10. They all go to the same children’s clinic and see the same pediatrician.

The kids, all in good health, get routine checkups, vaccinations, and other preventive care, Morga Tapia said. She gets appointment reminders via text and cards in the mail notifying her when it’s time for the kids’ vaccinations and wellness checks, as well as her Pap smears, she said.

Her family’s experience contrasts sharply with the state’s assessment of their health plan, according to a report on quality of care in Medi-Cal issued late last year. The report, which evaluated Medi-Cal health plans on pediatric care, women’s health, and chronic disease management, put Anthem Blue Cross in the lowest tier, and below par on multiple measures in numerous counties, including Fresno.

Another state report, released in late January, detailed how quickly insurers provide appointments for their patients, and put Anthem Blue Cross’ Medi-Cal plan near the bottom of the heap.

Anthem Blue Cross spokesperson Michael Bowman said in a statement that the period covered in the reports coincided with the covid-19 pandemic, “when our safety net providers dealt with significant challenges with workforce and appointment availability.”

Morga Tapia doesn’t give the insurer low marks. “It’s different for everybody. I have a good healthy family, and what Medi-Cal covers is really fortunate for us,” she said.

‘I Don’t Want to Die Yet’

In late 2021, doctors gave Lucas Moreno Ramirez a few months to live.

Struggling with diabetes and late-stage lung cancer, Moreno Ramirez suffered debilitating pain as he hacked and labored for breath. His doctors recommended that he stop treatment and start hospice care.

He felt as if they were giving up on him.

“They said they’re going to give me opioids for my pain and help me have a comfortable death,” said Moreno Ramirez, 68, who lives in Norwalk, in Los Angeles County. “I told them I don’t believe in that. I don’t want to die yet.”

A former landscaper and factory worker, Moreno Ramirez learned he had to be his own advocate, fighting for the care he believed he deserved from Medi-Cal.

He said his Christian faith gave him strength, and over the next few months, Moreno Ramirez pushed the program and his doctors to keep battling his cancer, using a different treatment with fewer side effects than chemotherapy.

“I believe in prayer,” he said. “But I believe in science and medication, too.”

Moreno Ramirez is one of the roughly 1.6 million Californians enrolled in both Medicare, which covers people who are 65 and older or have disabilities, and Medi-Cal, which kicks in to cover the costs and benefits that Medicare doesn’t.

He also relies on his Medi-Cal insurer to help him navigate the byzantine system. L.A. Care, the largest Medi-Cal plan with nearly 2.6 million members, connected him with a care manager who worked with him to identify a different treatment called Tagrisso and advocated for him to get it. 

Even with the new medication, Moreno Ramirez’s coughing fits returned last year, and his symptoms grew so painful he suspected the cancer was growing. He asked to see his pulmonologist but was told the first appointment would be in June 2023. So he switched doctors and scored an appointment nearly six months sooner.

“My old doctor didn’t help me. I didn’t trust him,” Moreno Ramirez said. “He was always too busy for me. I told my doctors, ‘Give me a chance.’”

Having taken his care into his own hands, he says he’s not in pain, his cough has subsided, and he feels hopeful for the future. “Now I feel good,” he said.

He has also sought more attention for his diabetes and received a continuous glucose monitor to measure his blood sugar. It’s better controlled now than it has been in decades, he said.

“You have to stand up for yourself and advocate,” said Joann Pacelo, the care manager who helped Moreno Ramirez change doctors, get quicker referrals to specialists, and get approved for in-home nursing visits.

“A lot of times it’s difficult with Medi-Cal because the doctors are busy and the reimbursements are so low, but no one should be denied the care they deserve.”

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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PERRY, Iowa — Fran Ruhl’s family received a startling letter from the Iowa Department of Human Services four weeks after she died in January 2022.

“Dear FAMILY OF FRANCES RUHL,” the letter began. “We have been informed of the death of the above person, and we wish to express our sincere condolences.”

The letter got right to the point: Iowa’s Medicaid program had spent $226,611.35 for Ruhl’s health care, and the government was entitled to recoup that money from her estate, including nearly any assets she owned or had a share in. If a spouse or disabled child survived Ruhl, the collection could be delayed until after their death, but the money would still be owed.

The notice said the family had 30 days to respond.

“I said, ‘What is this letter for? What is this?’” said Ruhl’s daughter, Jen Coghlan.

It seemed bogus, but it was real. Federal law requires all states to have “estate recovery programs,” which seek reimbursements for spending under Medicaid, the joint federal and state health insurance program for people with low incomes or disabilities. The recovery efforts collect more than $700 million a year, according to a 2021 report from the Medicaid and CHIP Payment and Access Commission, or MACPAC, an agency that advises Congress.

States have leeway to decide whom to bill and what type of assets to target. Some states collect very little. For example, Hawaii’s Medicaid estate recovery program collected just $31,000 in 2019, according to the federal report.

Iowa, whose population is about twice Hawaii’s, recovered more than $26 million that year, the report said.

Iowa uses a private contractor to recoup money spent on Medicaid coverage for any participant who was 55 or older or was a resident of a long-term care facility when they died. Even if an Iowan used few health services, the government can bill their estate for what Medicaid spent on premiums for coverage from private insurers known as managed-care organizations.

Supporters say the clawback efforts help ensure people with significant wealth don’t take advantage of Medicaid, a program that spends more than $700 billion a year nationally.

Critics say families with resources, including lawyers, often find ways to shield their assets years ahead of time — leaving other families to bear the brunt of estate recoveries. For many, the family home is the most valuable asset, and heirs wind up selling it to settle the Medicaid bill.

For the Ruhl family, that would be an 832-square-foot, steel-sided house that Fran Ruhl and her husband, Henry, bought in 1964. It’s in a modest neighborhood in Perry, a central Iowa town of 8,000 people. The county tax assessor estimates it’s worth $81,470.

Henry Ruhl, 83, wanted to leave the house to Coghlan, but since his wife was a joint owner, the Medicaid recovery program could claim half the value after his death.

Fran Ruhl, a retired child care worker, was diagnosed with Lewy body dementia, a debilitating brain disorder. Instead of placing her in a nursing home, the family cared for her at home. A case manager from the Area Agency on Aging suggested in 2014 they look into the state’s “Elderly Waiver” program to help pay expenses that weren’t covered by Medicare and Tricare, the military insurance Henry Ruhl earned during his Iowa National Guard career.

Coghlan still has paperwork the family filled out. The form said the application was for people who wanted to get “Title 19 or Medicaid,” but then listed “other programs within the Medical Assistance Program,” including Elderly Waiver, which the form explained “helps keep people at home and not in a nursing home.”

Coghlan said the family didn’t realize the program was an offshoot of Medicaid, and the paperwork in her file did not clearly explain the government might seek reimbursement for properly paid benefits.

Some of the Medicaid money went to Coghlan for helping care for her mother. She paid income taxes on those wages, and she said she likely would have declined to accept the money if she’d known the government would try to scoop it back after her mother died.

Iowa Medicaid Director Elizabeth Matney said that in recent years the state added clearer notices about the estate recovery program on forms people fill out when they apply for coverage.

“We do not like families or members being caught off guard,” she said in an interview. “I have a lot of sympathy for those people.”

Matney said her agency has considered changes to the estate recovery program, and she would not object if the federal government limited the practice. Iowa’s Medicaid estate collections topped $30 million in fiscal year 2022, but that represented a sliver of Medicaid spending in Iowa, which is over $6 billion a year. And more than half the money recouped goes back to the federal government, she said.

Matney noted families can apply for “hardship exemptions” to reduce or delay recovery of money from estates. For example, she said, “if doing any type of estate recovery would deny a family of basic necessities, like food, clothing, shelter, or medical care, we think about that.”

Sumo Group, a private company that runs Iowa’s estate recovery program, reported that 40 hardship requests were granted in fiscal 2022, and 15 were denied. The Des Moines company reported collecting money from 3,893 estates that year. Its director, Ben Chatman, declined to comment to KHN. Sumo Group is a subcontractor of a national company, Health Management Systems, which oversees Medicaid estate recoveries in several states. The national company declined to identify which states it serves or discuss its methods. Iowa pays the companies 11% of the proceeds from their estate recovery collections.

The 2021 federal advisory report urged Congress to bar states from collecting from families with meager assets, and to let states opt out of the effort altogether. “The program mainly recovers from estates of modest size, suggesting that individuals with greater means find ways to circumvent estate recovery and raising concerns about equity,” the report said.

U.S. Rep. Jan Schakowsky introduced a bill in 2022 that would end the programs.

The Illinois Democrat said many families are caught unawares by Medicaid estate recovery notices. Their loved ones qualified for Medicaid participation, not realizing it would wind up costing their families later. “It’s really a devastating outcome in many cases,” she said.

Schakowsky noted some states have tried to avoid the practice. West Virginia sued the federal government in an attempt to overturn the requirement that it collect against Medicaid recipients’ estates. That challenge failed.

Schakowsky’s bill had no Republican co-sponsors and did not make it out of committee. But she hopes the proposal can move ahead, since every member of Congress has constituents who could be affected: “I think this is the beginning of a very worthy and doable fight.”

States can limit their collection practices. For example, Massachusetts implemented changes in 2021 to exempt estates of $25,000 or less. That alone was expected to slash by half the number of targeted estates.

Massachusetts also made other changes, including allowing heirs to keep at least $50,000 of their inheritance if their incomes are less than 400% of the 2022 federal poverty level, or about $54,000 for a single person.

Prior to the changes, Massachusetts reported more than $83 million in Medicaid estate recoveries in 2019, more than any other state, according to the MACPAC report.

Supporters of estate recovery programs say they provide an important safeguard against misuse of Medicaid.

Mark Warshawsky, an economist for the conservative American Enterprise Institute, argues that other states should follow Iowa’s lead in aggressively recouping money from estates.

Warshawsky said many other states exclude assets that should be fair game for recovery, including tax-exempt retirement accounts, such as 401(k)s. Those accounts make up the bulk of many seniors’ assets, he said, and people should tap the balances to pay for health care before leaning on Medicaid.

Warshawsky said Medicaid is intended as a safety net for Americans who have little money. “It’s the absolute essence of the program,” he said. “Medicaid is welfare.”

People should not be able to shelter their wealth to qualify, he said. Instead, they should be encouraged to save for the possibility they’ll need long-term care, or to buy insurance to help cover the costs. Such insurance can be expensive and contain caveats that leave consumers unprotected, so most people decline to buy it. Warshawsky said that’s probably because people figure Medicaid will bail them out if need be.

Eric Einhart, a New York lawyer and board member of the National Academy of Elder Law Attorneys, said Medicaid is the only major government program that seeks reimbursement from estates for properly paid benefits.

Medicare, the giant federal health program for seniors, covers virtually everyone 65 or older, no matter how much money they have. It does not seek repayments from estates.

“There’s a discrimination against what I call ‘the wrong type of disease,’” Einhart said. Medicare could spend hundreds of thousands of dollars on hospital treatment for a person with serious heart problems or cancer, and no government representatives would try to recoup the money from the person’s estate. But people with other conditions, such as dementia, often need extended nursing home care, which Medicare won’t cover. Many such patients wind up on Medicaid, and their estates are billed.

On a recent afternoon, Henry Ruhl and his daughter sat at his kitchen table in Iowa, going over the paperwork and wondering how it would all turn out.

The family found some comfort in learning that the bill for Fran Ruhl’s Medicaid expenses will be deferred as long as her husband is alive. He won’t be kicked out of his house. And he knows his wife’s half of their assets won’t add up to anything near the $226,611.35 the government says it spent on her care.

“You can’t get — how do you say it?” he asked.

“Blood from a turnip,” his daughter replied.

“That’s right,” he said with a chuckle. “Blood from a turnip.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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