Eighteen months after April Adcox learned she had skin cancer, she finally returned to the Medical University of Charleston in South Carolina last May for treatment.
By then, the reddish spot along her hairline had grown from a 2-inch circle to covering almost her entire forehead. It oozed fluid and was painful.
“Honestly, I was waiting for it to kill me, because I thought that was what was going to happen,” said the 41-year-old mother of three, who lives in Easley, South Carolina.
After the biopsy diagnosis, Adcox first met with doctors at the academic medical center in late 2020.. The operation to remove the cancer would require several doctors, he was told, including a neurosurgeon, because of how close it was to his brain.
But Adcox was uninsured. He lost his job at an automotive plant in the early days of the pandemic and was equally apprehensive about the prospect of complicated surgery and a hefty bill at the time of his diagnosis. Instead of going ahead with treatment, she tried to disguise the enlarged cancerous area for more than a year with hats and long bangs.
Andrew J. for KHN. Whittaker
If Adcox had breast or cervical cancer, she likely would have qualified for insurance coverage under a federal law that expands Medicaid eligibility to low-income patients diagnosed with those two malignancies. According to cancer doctors and health policy experts, options for female patients with other types of cancer, as well as nearly all male patients, are few, particularly in South Carolina and the 11 other states that have not yet implemented Medicaid expansion. Access to Care Study.
Faced with potentially daunting bills, uninsured adults sometimes delay care, which can lead to worse survival outcomes, research shows. Patients’ chances of getting insurance to cover their treatment costs play a bit like a game of roulette, depending on where they live and what type of cancer they have.
“It’s so random — that, I think, is the heartbreaking part about it,” said Dr. Ivan Grabois, a head and neck surgeon and a physician at Adcox “Whether you live or die from cancer really shouldn’t be related to what state you live in.”
The Affordable Care Act gave states the option to expand Medicaid eligibility and cover more people. Shortly after the law passed, only 2.6% of adults ages 18 to 64 with new cancer diagnoses lacked insurance in Medicaid expansion states versus 7.8% in nonexpansion states, according to a 2018 study published in JAMA Oncology. Researchers from the American Cancer Society, who conducted the analysis, estimated that about 30,000 uninsured people are diagnosed with cancer each year.
But in all states, low-income uninsured patients with breast or cervical cancer may have another path to coverage, even if they don’t qualify for Medicaid. Adults with cancer detected through the National Breast and Cervical Cancer Early Detection Program can enroll in Medicaid for the duration of their cancer treatment, the result of advocacy efforts and federal legislation that began more than three decades ago.
According to the Government Accountability Office report published in 2020, 43,549 breast and cervical cancer patients were registered in 2019.
“If you’re lucky enough to get breast or cervical cancer, you’re fine,” said Dr. Fumiko Chino, a radiation oncologist at Memorial Sloan Kettering Cancer Center in New York City who studies access to and affordability of cancer treatments. “But otherwise, you may have some significant obstacles.”
The total amount billed to insurers in the year following a cancer diagnosis can be very high. For example, costs in 2016 averaged $168,730 for lung cancer and $137,663 for colorectal cancer, according to a 2022 study that calculated insurance claims for several common malignancies diagnosed among privately insured patients.
Because uninsured adults may struggle to get preventive care, their cancer may go undetected until it’s more advanced, making it costly for patients and health systems, said Robin Yabroff, study author and a scientific vice president at JAMA Oncology. American Cancer Society.
Patients who can’t get financial help through safety-net benefits sometimes collect medical debt, use credit cards or start fundraising efforts on online sites, Yabroff said. “We hear stories of people who mortgage their homes for cancer treatment.”
Cancer patients can purchase insurance through the ACA health insurance marketplace. But they often have to wait until the regular enrollment period near the end of the year, and those health plans don’t go into effect until the start of the next calendar year.
That’s because the federal law was designed to encourage people to sign up when they’re healthy, which helps control costs, said Marybeth Musumesi, an associate professor of health policy and management at George Washington University in Washington, DC, if a new diagnosis is made. . Qualifying events for the new coverage, he said, “so it would encourage people to stay uninsured when they were healthy and didn’t think they really needed coverage.”
Meanwhile, the on-ramp to Medicaid coverage for low-income patients with breast and cervical cancer is a story of successful advocacy, related to a 1990 law that created the National Breast and Cervical Screening Program. Mammography began to be widely recommended in the 1980s, and advocacy groups pushed to reach more underprivileged people, said Katie McMahon, policy chief for the American Cancer Society’s Cancer Action Network, the organization’s advocacy arm.
But studies have shown that some uninsured adults struggle to get care for cancers detected through screening programs, McMahon said. A 2000 law allowed states to expand Medicaid to them, and by 2008 all 50 states and the District of Columbia had done so, according to a 2020 GAO report.
For other cancer patients, Chino said, one of the remaining avenues for coverage is to qualify for disability through the Social Security Administration, after which they can apply for Medicaid. Federal agencies have a long list of criteria for cancer patients. It also has a compassionate allowance program, which offers expedited review for patients with certain serious medical conditions, including advanced or aggressive cancer.
Although the rules vary, many patients don’t qualify until their disease has spread or the cancer requires at least a year of intensive treatment, Chino said. That presents an inherent Catch-22 for people who are uninsured but have curable types of cancer, he said.
“To qualify for Medicaid, I have to wait for my cancer to be curable,” she said, “which is very frustrating.”
For example, the Compassionate Allowance program does not list basal cell carcinoma, and it covers head and neck cancer only if it has spread elsewhere in the body or cannot be surgically removed.
Adcox said that before his 12-hour operation last June, his financial aid application with the Medical University of South Carolina was still pending. Someone at the hospital, he recalled, estimated the bill would be $176,000 and asked how much Adcox could put down. He raised $700 with the help of loved ones.
But he qualified for financial aid and received no bills except from an outside lab service provider. “It’s over,” Adcox said. He has since undergone radiation and will have further reconstructive surgery. But she is cancer free. “It didn’t kill me. It didn’t kill me.”
Still, not everyone finds a safety net.
Brian Baker of El Paso, Texas, was uninsured and not working when he learned he had chronic myelogenous leukemia in the summer of 2021, said Stephanie Gamboa, his ex-wife and the mother of their young daughter. Her cancer doctor required an upfront payment, she said, and it took several months to borrow enough money.
He began chemotherapy the following year, and for months lost weight and became weak, returning to the emergency room with infections and worsening kidney function, Gamboa said. The last time their daughter saw her father, “he couldn’t get out of bed. He was literally skin and bones,” Gamboa said.
Baker began the process of requesting disability benefits. The text he sent Gamboa, which he shared with KHN, said the review of his application began in June 2022 and was expected to take six months.
The denial letter, dated Feb. 4, 2023, came more than a month after Baker’s death in December at the age of 32. It read in part: “Based on a review of your medical condition, you are not eligible for benefits on this claim.”
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Along with policy analysis and polling, KHN is one of the three main operating programs of the KFF (Kaiser Family Foundation). KFF is a non-profit organization that provides health information to the nation.