For nearly three agonizing years, Mariah Freschi and her husband have been trying to have a second baby. The California mother recently underwent surgery to remove her blocked fallopian tubes, leaving in vitro fertilization as her only option to get pregnant. But the cost quoted by her Sacramento-area clinic was $25,000 — out of reach for Freschi, a preschool teacher, and her husband, a warehouse worker.

“When we first found out IVF was our only option, it just felt so overwhelming,” said Freschi, who has insurance through the California marketplace. “No one sets aside 20, 30 grand to grow your family.”

The Freschis are far from alone in requiring medical assistance to have children: About 13% of women and 11% of men in the U.S. experience infertility, while others are in a same-sex relationship, single, or want to preserve their eggs or sperm before undergoing various medical treatments.

And, like the Freschis, many Americans do not have health insurance that pays for IVF.

During his campaign, President Donald Trump vowed that the government would cover IVF or require insurers to cover it. In February, he signed an executive order seeking policy recommendations on expanding IVF access, dubbing himself the “fertilization president” a few weeks later.

Whether the administration’s efforts will change policy remains unknown, but state-level attempts to mandate fertility coverage reveal the gauntlet of budgetary and political hurdles that such initiatives face — obstacles that have led to millions of people being left out.

“There are economic opponents, and there are ideological opponents,” said Sean Tipton, a lobbyist for the American Society for Reproductive Medicine. “It is a tough lineup of opponents. And that’s very consistent from state to state.”

Twenty-two states have passed legislation requiring insurers to cover at least some fertility care, and 15 of those require coverage for IVF. The laws vary widely, though, when it comes to who and what gets covered, largely because of debates over cost. Fertility services can range from diagnostic testing and ovulation-enhancing drugs to IVF, widely considered the most effective but also the most expensive treatment, during which one or more lab-fertilized eggs are transferred to a uterus.

It’s mostly those footing the bill amid rising health care costs and state deficits that have voiced opposition. State insurance mandates “factor in significantly” when it comes to whether employers continue to provide coverage at all because of financial concerns, according to Chris Bond, a spokesperson for AHIP, which represents health insurers, who also said employers “want to have flexibility with how these benefits are structured.”

States cite concerns about higher premiums and the budget impact of having to cover government workers. In the past few years, infertility coverage bills in Minnesota, North Dakota, and Louisiana, for example, failed largely over cost.

IVF advocates, however, cite data from a decade ago showing that fertility care in states with mandates has accounted for less than 1% of total premium costs, a figure similar to estimates for newer mandates. And advocates often argue that building a family is a human right, though fertility care is disproportionately used by wealthy, white women. Covering IVF for the Medicaid population, which includes more than 70 million Americans, rarely works its way into legislative proposals.

The California Example

California is a case study in how many of these conversations play out. Cost concerns sank IVF legislation in the state for several years before lawmakers approved a mandate last year. SB 729 goes into effect July 1 and requires large employers with state-regulated health insurance to cover infertility diagnosis and treatment, including IVF. State employees will get coverage in 2027.

California’s mandate is considered one of the most comprehensive and inclusive in the country, said Barbara Collura, president of Resolve: The National Infertility Association, making same-sex couples and single parents eligible for coverage. But it still leaves out most of the state’s insured population, including those covered by Medicaid, the Affordable Care Act marketplace, and self-insured companies, which account for the majority of workers and are federally regulated.

Mimi Demissew, executive director of Our Family Coalition, an LGBTQ+ rights nonprofit that co-sponsored SB 729, said her group envisioned the broadest possible mandate, which would have included people covered by small employers, the marketplace, and other privately purchased plans. “We dreamed big,” she said. “But the pushback and the whittling down was because of the budget.”

Gov. Gavin Newsom’s finance department opposed SB 729 over concerns about the state’s budget and higher premiums. And groups representing the state’s health plans and employers cited costs in their opposition, with the California Chamber of Commerce calling health care “one of the most formidable expenses a business experiences,” per a legislative analysis.

The law going into effect this year is estimated to cover around 9 million people, 5 million fewer than originally proposed. Annual premiums, whose cost is typically shared by employers and employees, are projected to increase for people with state-regulated health insurance by approximately $40 per person covered in the first year.

Mandates Vary Widely by State

More than 10 states — including California — have what fertility experts call “comprehensive” coverage, which requires some insurers to cover IVF with minimal restrictions. But even in those states, large swaths of the population miss out.

In Massachusetts, which has one of the country’s oldest, broadest mandates for infertility coverage, including IVF, only about 30% of women were eligible as of 2019.

Those covered by these mandates, however, are grateful. Luisa Lopez, a nonprofit executive, credited the three IVF cycles that New York’s mandate covered with allowing her and her husband to have a baby after 10 years of trying.

“I feel very lucky to live in a state that prioritized this,” Lopez said. Still, she said, she was on the hook for thousands of dollars in copays and other costs.

In states with narrow mandates, coverage is elusive. With limited exceptions, only state employees have qualified for IVF coverage through Utah’s mandate, for example. Joseph Letourneau, a University of Utah fertility specialist who successfully lobbied for fertility preservation coverage for Medicaid patients and state employees with cancer, said he couldn’t recall ideological opposition to fertility coverage but that some legislators were concerned about raising costs.

Oklahoma and Kentucky limit coverage requirements to patients who wish to preserve their fertility because of specific medical conditions.

Pushback Beyond Costs

Some opponents of IVF coverage say life begins at the moment of conception and have expressed concerns about the disposal of embryos during the IVF process.

Chieko Noguchi, a spokesperson for the U.S. Conference of Catholic Bishops, said the Catholic Church teaches that IVF is morally wrong because it “involves the death or freezing of embryonic children and treats human beings like products that can be bought and ordered.”

In Republican-controlled-Georgia, some advocates say the proposal of abortion restrictions has distracted from efforts to mandate fertility coverage. SisterSong, a reproductive justice nonprofit, supports two bills that would require private insurers and Medicaid to cover IVF in Georgia. But, the organization’s director of maternal health and birth equity initiatives, Leah Jones, acknowledged a steep uphill battle given the costs and anti-abortion legislation that some advocates fear could criminalize IVF. Having to fight just for the legality of IVF, she said, detracts from expanding access.

“We’re always on the defense,” Jones said.

Several states, including Georgia, are weighing or have passed bills that would protect access to IVF after Alabama’s state Supreme Court ruled that embryos created through IVF should be considered children, leading to temporary suspension of those services. Zemmie Fleck, executive director of Georgia Right to Life, said the Georgia anti-abortion bill would not make IVF illegal.

This fissure in Trump’s base over protecting versus restricting or even prohibiting IVF has raised questions about how his executive order will play out. Letourneau of Utah said some of his patients have asked if the order will cover their treatment costs.

The White House did not respond to requests for comment.

An Uncertain Road Ahead

While a growing number of companies provide IVF coverage as a health benefit, most patients are left to find ways to pay on their own. Some have turned to loans — IVF financing startups such as Gaia and Future Family have raised millions in venture funding.

The Freschis have applied for grants, are crowdfunding, and have put their upcoming cycle on a credit card.

“It’s so scary,” said Freschi, describing worries about potential unexpected IVF costs. “It just feels like you’re constantly walking around with a weight on you.”

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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SACRAMENTO, Calif. — Medi-Cal, California’s complex, $174.6 billion Medicaid program, provides health insurance for nearly 15 million residents with low incomes and disabilities. The state enrolls twice as many people as New York and more than three times as many as Texas — the two states with the largest number of Medicaid participants after California.

Enrollment is high because California goes beyond federal eligibility requirements, opening Medi-Cal to more low-income residents. The state also provides a broad range of benefits, such as vision, dental, and maternity care — some of which is largely paid for by federal dollars but which also affects state spending.

But lately, Medi-Cal has found itself in political crosshairs.

Democrats say the biggest threat to Medi-Cal is $880 billion in GOP budget cuts being mulled in Washington, D.C., which health experts say would require eligibility restrictions, such as work requirements, or program cuts to yield enough savings over a decade. Republicans argue that Medicaid costs have spiked due to fraud and abuse and they criticize state Democrats for making the benefit available to immigrants regardless of legal status.

In March, Gov. Gavin Newsom’s administration borrowed $3.4 billion to cover an unexpected overrun in Medi-Cal, and lawmakers in April appropriated an additional $2.8 billion for the rest of the fiscal year. Although the Democratic governor acknowledged a need for adjustments, he has defended the state’s efforts to get more people covered. In 2022, California’s uninsured rate for residents under age 65 hit a record low of 6.2%, according to the California Health Care Foundation.

As lawmakers debate funding for the safety net program, here’s what’s at stake for California’s largest health program.

Who’s Covered?

More than a third of Californians depend on Medi-Cal or the closely related Children’s Health Insurance Program to see a doctor, therapist, or dentist. They rely on the program to get medicine and access treatment. It can also be a lifeline for families by allowing people with disabilities and seniors to stay in their homes and providing coverage to their caregivers. It also funds nursing care for seniors.

The overwhelming majority of enrollees qualify because they earn 138% or less of the federal poverty level: $21,597 annually for an individual person or $44,367 for a family of four. While that’s low for a state where the median household income tops $96,000, it’s far more generous than Alabama’s family eligibility limit, which is 18% of the federal poverty level, or Florida’s, at 26%.

Unlike Alabama or Florida, California extends coverage to low-income adults without dependents. The state also covers more people with disabilities who work, inmates, and other residents who wouldn’t qualify for the benefit program if California lawmakers hadn’t expanded the program beyond what the federal government requires.

According to state estimates, Medi-Cal covers about 7.3 million low-income families and an additional 5 million adults, most of whom don’t have dependents. An additional million people with disabilities rely on the program.

Medi-Cal also picks up the tab for 1.4 million residents 65 and older for benefits not covered by Medicare, such as long-term care and dental, hearing, and vision care.

The majority of adult Medi-Cal recipients under 65 work, according to a KFF review of March 2024 census data. In California, about 42% of nondisabled adults on Medi-Cal work full time and an additional 20% work part time. Those not employed were most commonly caring for a family member, attending school, or ill.

Just over half of Medi-Cal recipients are Latino, about 16% white, 9% Asian or Pacific Islander, and 7% Black, according to state enrollment data. That differs from the nation as a whole, where about 40% of people under age 65 who use Medicaid are white, 30% Hispanic, 19% Black, and 1% Indigenous people.

Where Does the Money Come From?

The federal government pays for about 60% of the Medi-Cal program. Of its nearly $175 billion budget this fiscal year, Washington, D.C., is expected to contribute $107.5 billion.

An additional $37.6 billion comes from the state’s general fund. The final $29.5 billion comes from other sources including hospital fees, a managed-care organization tax, tobacco tax revenue, and drug rebates.

California receives 50% in matching federal dollars for core services, such as coverage to children and low-income pregnant women. But it gets a 90% match for the roughly 5 million Californians it has added to rolls under the Medicaid expansion authorized by the Affordable Care Act.

Where Does It Go?

On average, Medi-Cal costs $8,000 per recipient, but costs vary widely, according to a March analysis by the California Legislative Analyst’s Office.

For instance, people with disabilities account for 7% of enrollees but 19% of Medi-Cal’s spending, with an average annual cost of $21,626.

Meanwhile, the cost to cover seniors averages roughly $15,000. And senior enrollment, at 1.4 million, has skyrocketed, increasing 40% since 2020 as lawmakers eased the rules for how many assets people 65 and older could have and still qualify for the program.

California also foots much of the bill to cover about 1.6 million immigrants without legal status — roughly $8.4 billion of the $9.5 billion, Department of Finance program budget manager Guadalupe Manriquez said during a recent Assembly Budget Committee hearing.

What Could Get Cut?

President Donald Trump in March said that he would not “touch Social Security, Medicare, Medicaid” but focus on getting the “fraud out of there.” However, health experts say Medicaid services would be gutted if Congress follows through on massive spending reductions to pay to extend Trump’s tax cuts.

Congressional Republicans have discussed implementing work requirements for nondisabled adults, which could affect at least 1 million Medicaid enrollees in California, the most of any state, according to an analysis by the Urban Institute.

Lawmakers also could roll back the Medicaid expansion under the Affordable Care Act, also known as Obamacare, which passed in 2010 and allowed more people to qualify for Medicaid based on income. California, 39 other states, and Washington, D.C., have chosen to adopt “Medicaid expansion,” in which the federal government pays for 90% of coverage for those enrollees.

Such a move would cost California billions each year if it opted to continue coverage for the roughly 5 million additional enrollees who have gained coverage under the expansion.

Republicans could also make it tougher for states such as California to continue to draw federal aid through provider taxes such as the MCO tax, something the first Trump administration proposed but later dropped. The tax on managed care plans brings in about $5 billion a year and was endorsed by voters in a ballot initiative last fall, but the federal government has been complaining for years about how states levy such taxes on insurance plans and hospitals. If it restricts how states collect these taxes, it would likely cause a funding gap in California.

If federal cuts occur, Newsom officials acknowledge, the state couldn’t absorb the cost of existing programs. Republicans are pressuring Democrats who control the legislature to end Medi-Cal coverage of residents without legal status — something neither Newsom nor Democratic legislative leaders have expressed a willingness to do.

State leaders also could be faced with cutting optional benefits such as dental care and optometry, trimming services aimed at enhancing recipients’ quality of life, or reducing payments to managed care plans that cover 94% of Medi-Cal recipients.

That’s what California lawmakers did during the Great Recession, cutting reimbursement rates to providers and eliminating benefits including eye and dental care for adults. The governor at the time, Republican Arnold Schwarzenegger, went a step further, chopping $61 million from counties’ Medi-Cal funding in a budget bloodletting that he said contained "the good, the bad, and the ugly."

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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They’re the fixers, the ones who step in when Affordable Care Act enrollees have a problem with their coverage, like a newborn incorrectly left off a policy or discovering that a rogue broker had signed them up or switched their plan without consent.

Specially trained caseworkers help resolve such issues, which might otherwise cause consumers to rack up large doctors’ bills or prevent them or their family members from getting care. Now, though, the broad federal reduction in force set in motion by the Trump administration has cut the ranks of those caseworkers, slashing two out of six divisions of caseworkers, according to one affected worker and a former Centers for Medicare & Medicaid Services official familiar with the situation, Jeffrey Grant.

Currently, the number of ACA enrollees is at an all-time high of 24 million. The ACA — known as Obamacare — has long drawn disfavor from Republicans and Trump himself. The health law faces additional changes next year that, if adopted, could sow confusion and more problems. Consumers would face a new learning curve with extra paperwork and rules. And the caseworker cuts might extend the time needed to resolve any difficulties.

“It impacts not only our jobs, but all these people we serve,” said one New York City-based caseworker, who was let go in a Feb. 14 purge affecting federal employees in their probationary periods. “Usually, we would have on average 14 days to take care of a case that was very difficult, although the urgent cases would be solved within two to three business days. It will now be delayed so much more. Whole teams got wiped out completely.”

NPR and KFF Health News are not naming the two affected workers in this article because they fear professional or personal repercussions for speaking to the media.

The two teams of caseworkers were dismantled in a haphazard fashion that left some workers without an official notice but locked out of their computers.

The cuts have demoralized caseworkers, whose jobs demand a grasp of complex and arcane health insurance rules in a little-known government department that most consumers don’t interact with — CMS’ Exchange Customer Solutions Group — until they need help.

“The loss in staffing is going to reduce the ability for people to get through” to caseworkers after contacting the marketplace or other organizations for help, said Jackie Kiger, executive director of Pisgah Legal Services, a nonprofit that provides legal and ACA help for North Carolina consumers and is facing a budget reduction under a separate effort by the Trump administration to cut “navigator” funding by 90%. Navigators are government-funded nonprofits that help people enroll in the ACA or resolve problems with coverage.

The federal force reduction aims to decrease the number of employees at agencies within the Department of Health and Human Services from 82,000 to 62,000, including the Centers for Disease Control and Prevention, the Food and Drug Administration, the National Institutes of Health, and CMS.

CMS, which oversees the ACA and other government health programs, will lose about 300 workers, including about 30 caseworkers scattered nationwide. The cuts come amid thousands of other federal job losses, including front-line workers across an array of agencies, from Social Security field offices to the National Park Service.

In a press release, HHS estimated its reduction in force will save taxpayers $1.8 billion a year. No one from CMS responded to KFF Health News’ questions about the caseworker reductions.

What Will Be Affected?

When consumers have a problem with their ACA plan, their first step is usually to call the federal or state marketplace on which they purchased coverage.

Those call centers can handle basic questions about plans purchased on the federal exchange, which serves 31 states. (State marketplaces handle their own complex cases and don’t rely on federal caseworkers.)

When someone calls the federal marketplace 800 number with coverage problems, the inquiry probably winds up on a caseworker’s desk, said one affected caseworker. That employee received a reduction-in-force notice several days after losing access to their work computer on April 1.

Caseworkers usually don’t speak directly with consumers, the worker said. Using information sent over by the federal marketplace — including notes taken when consumers called in with problems, as well as ACA applications — they handle or oversee consumer requests, such as canceling a plan or adding a member.

One of the last problems handled by that caseworker involved a child born in November who was not added correctly to the family’s plan for 2024, meaning any care the child received during the last two months of the year was not covered and the family risked being stuck with the bills.

“This person did everything right, including calling the marketplace within 60 days to report the birth and add the newborn to their coverage,” said the worker, who was quickly able to resolve it because it was a marketplace error.

The worker, who is now soured on federal employment and will look for a new job in the private sector, said caseworkers handled an average of 30 issues a day, but that in recent months the number kept climbing, heading past 45, and grew even more intense after the Feb. 14 dismissal of probationary employees.

“It’s not an easy job,” the worker said, noting the challenge of constantly evolving rules and policies governing health plans.

Ferreting Out Fraud

In the past year, caseworkers have dealt with cases involving unauthorized enrollments or switching, a problem that ticked up in late 2023, according to KFF Health News investigations, and continued through much of last year, resulting in at least 274,000 complaints to CMS through August. The complaints centered on practices by rogue brokers who enrolled or switched coverage for consumers without their express knowledge. That could leave them without access to their health provider networks or drug coverage, or even facing a tax bill.

Though it is unclear how many such complaints fell to a federal caseworker, some improperly switched consumers want to be restored into plans they had originally chosen, while others want them canceled.

“I have seen people who were enrolled and every two or three months a broker would switch them to a different plan,” said the caseworker who was locked out in early April. “The more health plans they were enrolled in, the more difficult it was to handle on the back end.”

New hires spend months learning the ropes.

The New York-based worker let go in February during her probationary period said she had joined CMS in October and spent three months in training. Just about a month after completing that training, she was let go — a bitter irony, she said, because she had sought stability in a job with the federal government, having experienced a layoff during her private-sector career.

“I took a huge pay cut — over $40,000 — when I went from the private sector into the government,” said the mother of three whose husband serves in the military. Her federal salary was about $76,000, which is not high for an expensive market like the New York metropolitan area. “But I took it as an opportunity to get in the door and move up. Then, boom, I get hit with another layoff.”

“I can only imagine how hard it is for people with 10 to 15 years with the government who are banking on it for retirement,” she said.

Starting next year, the Trump administration has proposed several changes to the ACA, including ending year-round eligibility for very low-income applicants, requiring additional financial and eligibility documentation, and charging some people a monthly $5 fee when auto-reenrolled in coverage until they confirm their eligibility.

Such changes will “make things harder, so there you will have more things that go wrong,” said Grant, the former CMS official, who founded Schedule F Healthcare Strategies after leaving CMS. “You will then also have fewer caseworkers to handle the work.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

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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PBS News Weekend’s Ali Rogin spoke with KFF Health News contributor Michelle Andrews about what some people with missing limbs consider a disparity in health insurance coverage: Though a knee replacement likely would be covered, a prosthetic knee isn’t always. A prosthetic device can be subject to cost caps and an amputee may be required to prove medical necessity for coverage. Andrews recently explored these issues in her article “Health Insurers Limit Coverage of Prosthetic Limbs, Questioning Their Medical Necessity.”

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

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This story can be republished for free (details).