Why some cancer patients will fall off a Medicaid coverage cliff this summer

Laura Santhanam Laura Santhanam

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Less than a year after she enrolled in Medicaid, recovering cancer patient Kelly Oldfield will likely lose her coverage this summer after the COVID-19 public health emergency expires next month, leaving her – and other medically vulnerable patients like her – to struggle alone once again.

Oldfield, a single mother of seven, had lived uninsured for most of her 56 years, delaying care she could not afford and ignoring worsening health problems. Then in 2017, a sharp abdominal pain sent her to the emergency room. A doctor showed Oldfield an X-ray of a 3-centimeter tumor on her right ovary, but without insurance, she said, the hospital sent her home. Fear of medical debt and lack of funds for things like travel and staying overnight near a hospital that could remove the tumor left Oldfield to do what so many uninsured people must – gamble with her health.

For three years, Oldfield watched her abdomen swell as if she were “pregnant with twins.” Looking back, she compared herself to a frog in a pot of boiling water, unaware the temperature was slowly rising – and becoming increasingly deadly.

In 2020, she called an ambulance when she began vomiting a clear, mucus-like liquid and could not stop. At nearby North Alabama Medical Center, staff were unable to help her, but they recognized she was in danger. Oldfield recalled a doctor who took one look at her scans and said, “‘This thing is going to kill you if we don’t get it out of you.’”

Within two weeks, Oldfield met with a gynecologist and underwent emergency surgery at the University of Alabama at Birmingham. She needed routine care and regular checkups to ensure the cancer did not return. But state officials repeatedly denied her Medicaid applications. At one point, the state said she did not qualify because she received $700 in monthly child support from her ex-husband – too much household income to warrant coverage. She felt as if she were stuck “in no man’s land,” Oldfield said.

“I didn’t feel like I was in America. How can this be?” she said.

A few months later, while talking to a financial aid officer at her youngest child’s college, Oldfield learned she qualified for Medicaid as a caregiver to someone under age 19. Her card showed up in the mail in under two weeks.

“I was shocked,” she said. “I thought it was magic.”

WATCH: What happens when U.S. COVID emergency measures end in May?

Nationwide, an estimated 15 percent of cancer patients under age 64 are enrolled in Medicaid, along with another 5 percent of cancer patients who are age 65 or older, according to the American Cancer Society. Continuity of care is extremely important for recovery and remission.

Unfortunately for Oldfield, the relief of getting that care may be temporary, as she could soon become uninsured once again. When her youngest turns 19 in July, Oldfield will lose her Medicaid eligibility. By then, the pandemic-era provision that allowed for continuous enrollment in the public health insurance program already expired on April 1, ahead of the end of COVID’s public health emergency.

Some states say they will take up to 18 months to check people’s status as Medicaid recipients, but Alabama – a state that has not expanded Medicaid – is giving most people 60 days to confirm they still qualify before it begins shedding names from its rolls in June. Children will be allowed to keep continued coverage for 12 months, but research shows that when adults lose health insurance, that often trickles down to their kids. Overall, more than 60,000 Alabamans are expected to lose Medicaid by June 2024, said Jennifer Harris, who sits on the state’s Medicaid Unwinding Task Force and works as a health policy advocate with Alabama Arise.

Megan McGrew/ PBS NewsHour

“There is a fear that a number of people are going to be lost, and fall through the cracks,” she said.

Barring further guidance from the federal government, which is in charge of funding, and action from states, which administer the program, Oldfield fears she may be once again on the losing end of her wager with the health care system.

For three years, Medicaid recipients have gotten to keep their coverage uninterrupted, contributing to one of the lowest periods of uninsurance in modern U.S. history – 8 percent. That started back in March 2020, when President Donald Trump declared the coronavirus pandemic a public health emergency, allowing the U.S. government to move in a faster, more coordinated way as nations around the world scrambled to fight COVID. It also mandated that people who were on Medicaid before or during the public health emergency be allowed to keep that coverage rather than undergo the typically annual redetermination process to see if they still qualified for the program.

Health care providers, systems and agencies – all overwhelmed by the pandemic – could postpone bureaucratic paperwork and focus on treating patients. At the same time, Medicaid recipients could access COVID tests, vaccines and treatment, in addition to normal care, without fear of losing their health insurance and incurring medical debt – a major reason why people postpone getting timely care.

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In December’s congressional negotiations that produced an omnibus spending bill to keep the government open, lawmakers severed further funding for COVID-related health care. Then, in January, the Biden administration announced plans to end the public health emergency on May 11.

As a result, as many as 15.8 million people nationwide could lose their coverage, in what advocates call the most significant turnover in health insurance since the Affordable Care Act became law. While some of those people, like Oldfield, will no longer qualify for Medicaid due to not meeting income eligibility or other requirements, advocates warn that as many as 7 million eligible recipients may lose their Medicaid coverage due to administrative churn – that is, not re-enrolling due to a host of accessibility barriers. Their renewal letter may have been sent to an old mailing address, they may encounter language barriers or lack reliable internet access, or maybe they have disabilities and require additional support. Those hurdles can lead them to miss deadlines and their coverage lapses.

Megan McGrew/ PBS NewsHour

“The uninsurance rate will go up,” said Daniel Tsai, deputy administrator and director of the Center for Medicaid and CHIP Services in the Centers for Medicare and Medicaid Services, during an April 5 call with reporters.

States have started going through Medicaid rolls, checking that recipients remain eligible based on income and other criteria, a process called redetermination. But this step marks a return to a nation of two health care systems – one where 40 states and the District of Columbia have expanded Medicaid, and another 10 states where residents no longer qualify for Medicaid and do not earn enough to pay for their own health insurance, thus falling into the coverage gap.

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“States have a lot of tools but it’s up to them whether they use them,” said Lucy Dagneau, senior director for state and local campaigns for the American Cancer Society. “That’s one of our biggest concerns.”

On Monday, President Joe Biden signed a resolution passed by Congress ending the COVID national emergency — distinct from the public health emergency — that had granted care providers blanket waivers on things like reporting and facility requirements.

Tsai said his agency’s “best bet” is to assist states in helping preserve as many people’s coverage as possible, and that they will be on the lookout for people not receiving benefits they are entitled to from states administering the program. “We will take action based on what we have federal authority that requires us to,” he said.

Most Americans – 83 percent – view health care coverage as a basic human right, according to the latest PBS NewsHour/NPR/Marist poll, and nearly two-thirds think the federal government is responsible for providing that coverage.

For months, care providers at the nation’s network of federally qualified community health centers have been preparing for Medicaid’s unwinding, said Dr. Julia Skapik, a physician in Mount Vernon, Virginia, and chief medical information officer for the National Association of Community Health Centers. While community health centers can take anyone regardless of their ability to pay, oncologists who are willing to see patients without health insurance typically have long waitlists for care, Skapik said. That will only worsen.

She is especially concerned that people will miss pap smears, mammograms and screenings in order to avoid medical debt, increasing the likelihood that once-treatable masses will grow undetected, eventually becoming inoperable and fatal.

“Things are going to rapidly spin out of control,” Skapik said.

Dr. Michael Sarap, a surgeon in Cambridge, Ohio, shares her concerns. His rural, short-staffed practice works with cancer patients who travel far to receive care they normally cannot afford. His staff calls research hospitals and clinics within nearly a 100-mile radius to ask on behalf of his patients for rebates, discounts and access to clinical trials that might make a difference and improve someone’s chances at survival and remission. He fears that Ohio’s brief redetermination window will translate to more people losing coverage, care and ultimately their health and lives, primarily because patients “are afraid to pay.”

Pessimistic about narrow redetermination windows, Sarap warned, “There’s no way it’ll get done in an orderly fashion. it’s gonna be a disaster.”

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Oldfield is also in a race against time. She said she is “making as many appointments as I can” before she loses her Medicaid this summer.

After her car recently caught on fire, she now relies on others to drive her to get care and may have to pay for gas money for the trip, assuming people do not suddenly cancel on her. In recent years, the state has lost rural hospitals, translating to longer travel times for emergency care or special procedures and making care for people in those parts of Alabama even more precarious.

Some days, occasional but terrible abdominal pains remind Oldfield of cancer’s ever-looming threat: “I don’t know where it’s coming from.” But cancer is not the only health issue she wrestles with. She also suffers from depression and diabetes, and recently found out she has glaucoma.

Across Oldfield’s state of Alabama, Harris said, more workers have been hired to enroll people on marketplace insurance plans and to help people complete sometimes complicated paperwork.

“Everyone should be able to see a doctor, pick up a medication, have a test done that can be preventative,” Harris said. “That shouldn’t depend on you being outside the coverage gap.”

Correction: This story originally stated that the Medicaid continuous enrollment provision would end on May 11; it ended April 1, while the public health emergency will expire in May.

Left: As many as 15.8 million people in the United States could lose health care coverage under Medicaid after the COVID pandemic's public health emergency expires. This move leaves medically vulnerable individuals, including cancer patients, at risk for losing access to health care when they need it most. Photo by Getty Images

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Laura Santhanam Laura Santhanam

Laura Santhanam is the Health Reporter and Coordinating Producer for Polling for the PBS NewsHour, where she has also worked as the Data Producer. Follow @LauraSanthanam