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 area along her hairline had grown from a 2-inch circle to cover almost her entire forehead. It was oozing liquid and it was painful.
“Honestly, I was just 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.
Adcox had first met doctors at the University Medical Center in late 2020, after a biopsy diagnosed basal cell carcinoma. The operation to remove the cancer would require multiple doctors, she was told, including a neurosurgeon, due to the proximity to her brain.
But Adcox was uninsured. She had lost her job at a car factory at the start of the pandemic and, at the time of her diagnosis, was also panicked by the complex surgery and the prospect of a hefty bill. Instead of continuing with treatment, she attempted to camouflage the growing cancerous area for over a year with hats and long bangs.
If Adcox had developed breast or cervical cancer, she likely would have qualified for insurance coverage under a federal law that extends Medicaid eligibility to low-income patients diagnosed with those two. malignant tumors. For patients with other types of cancer, as well as almost all men, options are few, especially in South Carolina and the 11 other states that have yet to implement the expansion. of Medicaid, according to cancer doctors and health policy experts who study access to care.
Faced with potentially disheartening bills, uninsured adults sometimes delay care, which can lead to worse survival outcomes, research shows. The chances of patients getting insurance to cover the cost of treatment are a bit like a game of roulette, depending on where they live and what type of cancer they have.
“It’s very random – that’s, I think, the heartbreaking part about it,” said Dr. Evan Graboyes, head and neck surgeon and one of Adcox’s physicians. “Whether you live or die from cancer shouldn’t really have to do with what condition you live in.”
The Affordable Care Act gave states the ability to expand Medicaid eligibility and cover more people. Shortly after the law was passed, according to a study published in JAMA Oncology in 2018, only 2.6% of adults ages 18-64 with a new cancer diagnosis were uninsured in the states. expanding Medicaid, compared to 7.8% in non-expanding states. Researchers from the American Cancer Society, who conducted the analysis, estimate 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 can have another route to coverage, even if they don’t otherwise 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, thanks to advocacy efforts and to federal legislation that began more than three decades ago.
In 2019, 43,549 breast and cervical cancer patients were enrolled, according to a Government Accountability Office report published in 2020.
“If you’re lucky enough to be diagnosed with breast or cervical cancer, you’re fine,” said Dr. Fumiko Chino, a radiation oncologist at Memorial Sloan Kettering Cancer Center in New York, who studies access and affordability of cancer treatments. “But if not, you could have significant obstacles.”
The total amount billed to the insurer in the year following a cancer diagnosis can be 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 in privately insured patients.
Since uninsured adults may struggle to afford preventative care, their cancer may not be identified until it is more advanced, making it more costly for the patient and the healthcare system. health, said Robin Yabroff, author of the study in JAMA Oncology and vice president of science for the American Cancer Society.
Patients who can’t get financial help through a safety net sometimes rack up medical debt, use credit cards or initiate fundraising efforts through online sites, Yabroff said. “We hear stories of people mortgaging their homes to pay for cancer treatment.”
Cancer patients can purchase insurance through the ACA health insurance marketplace. But they often have to wait for the regular enrollment period toward the end of the year, and those health plans don’t go into effect until the beginning of the following calendar year.
That’s because federal law was designed to encourage people to enroll when they’re healthy, which helps control costs, said MaryBeth Musumeci, associate professor of health policy and management. at George Washington University in Washington, D.C. If a new diagnosis was a qualifying event for new coverage, she said, “then it would cause people to stay uninsured as long as they were healthy and they didn’t think they would really need a blanket.”
Meanwhile, the rise of Medicaid coverage for low-income patients with breast and cervical cancer is a story of successful advocacy, dating back 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 underserved people, said Katie McMahon, director of policy at the American Cancer Society Cancer Action Network, the advocacy arm of the organization.
But research has shown that some uninsured adults struggle to seek treatment for cancers detected through the screening program, 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 the GAO’s 2020 report.
For other cancer patients, one of the other avenues for coverage, according to Chino, is to qualify for disability through the Social Security Administration, after which they can apply for Medicaid. The federal agency has a long list of criteria for cancer patients. It also has a compassionate care allowance program, which provides faster checkups for patients with certain serious medical conditions, including advanced or aggressive cancers.
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. This presents an inherent catch-22 for people who are uninsured but have curable types of cancer, she said.
“To get Medicaid, I have to wait until my cancer is incurable,” she said, “which is very depressing.”
For example, the compassionate care allowance program does not list basal cell carcinoma and only covers head and neck cancer if it has spread elsewhere in the body or cannot be surgically removed.
Adcox said that before his 12-hour surgery last June, his application for financial aid from the Medical University of South Carolina was still pending. Someone at the hospital, she recalls, estimated the bill would be $176,000 and asked how much Adcox could deposit. She cobbled together $700 with the help of her loved ones.
But she was eligible for financial assistance and received no bills except from an outside lab service provider. “It’s over,” Adcox said. She has since undergone radiation therapy and will undergo further reconstructive surgeries. But she is cancer free. “It didn’t kill me. It didn’t kill me.”
Yet not everyone finds a safety net.
Brian Becker, of El Paso, Texas, was uninsured and not working when he learned he had chronic myeloid leukemia in the summer of 2021, said Stephanie Gamboa, his ex-wife and the mother of their young daughter. Her cancer doctor demanded an upfront payment, she said, and it took several months to borrow enough money.
He started chemotherapy the following year and over the months lost weight and got weaker, returning to the emergency room with infections and worsening kidney function, Gamboa said. When their daughter last saw her father, “he couldn’t get out of bed. He was just skin and bones,” Gamboa said.
Becker began the process of applying for disability benefits. The text he sent to Gamboa, which she shared with KHN, said the review of his candidacy began in June 2022 and was expected to take six months.
The denial letter, dated February 4, 2023, came more than a month after Becker died in December at the age of 32. It said in part: “Based on a review of your medical condition, you are not eligible for benefits from this claim.”