Americans spend nearly $1 in every five on health care.
The U.S. health care system is facing rising prices for cutting-edge treatments like the cancer drug Keytruda, potentially raising overall costs.
It’s been nearly four years since doctors declared Mariel Santos McLeod free of colon cancer, but she still doesn’t feel free from the burden of medical bills.
McLeod, who lives near Charleston, South Carolina, is still paying off the costs of chemotherapy she received after her diagnosis in 2017. She now also faces an onslaught of out-of-pocket costs for follow-up and care, including regular visits to a pulmonologist and allergist.
McLeod, 45, said she has already spent $2,500 in the first two months of this year and owes another $1,300 for a colonoscopy in January. This is on top of the $895 monthly premium for her health insurance plan, which covers her family of six.
These costs allowed Ms. McLeod to make other care assignments. For example, she has been experiencing severe chest pain since February, but has been putting off getting a CT scan or seeing a cardiologist.
“We’re having to pick and choose what we really need to prioritize,” said McLeod, director of strategic programs and partnerships at Cancer Hope Network, a nonprofit organization that supports cancer patients. Even in that role, she struggles to overcome the financial aftermath of surviving her illness.
The cost of post-cancer treatment often “holds us hostage,” she says.
McLeod is one of about 19 million cancer survivors in the United States, many of whom still require prescriptions, doctor visits and treatments to monitor their condition and deal with post-treatment side effects. According to the American Cancer Society Cancer Action Network, of more than 1,200 cancer patients and survivors surveyed in 2024, about 47% had medical debt, and nearly half said they owed more than $5,000.
But health policy researchers and patient advocates say the experiences of cancer survivors reveal the limits of the Trump administration’s plan to lower premiums and that it may not help patients who face high medical costs each year. The proposal focuses on increasing the availability of high-out-of-pocket health insurance, which has low monthly payments but requires patients to pay thousands of dollars out of pocket before coverage begins.
Additionally, the administration has supported giving insurance companies more latitude to sell plans that are not compliant with the Affordable Care Act. Such plans could prohibit participation by people with pre-existing health conditions, such as those diagnosed with cancer, and exclude essential benefits that ACA plans must cover.
The administration did not respond to requests for comment on how the proposal would affect cancer survivors. But proponents argue that in general, people will have more flexibility to customize their coverage and will have more options for plans with lower monthly fees.
Michael Cannon, director of health policy research at the Cato Institute, a libertarian think tank, believes that if health plans are exempted from the ACA’s regulations, patients will have better control over their spending and will be able to choose the types of care they receive. For example, a cancer survivor may choose a plan that includes cancer treatment but not maternity care.
Jennifer Hawk, associate policy principal at the American Cancer Society’s Cancer Action Network, said history has shown that coverage is not that simple, especially for people with pre-existing conditions. Before the ACA, when health plans could “pick and choose” enrollees based on pre-existing conditions, those who needed the most expensive treatments often had trouble finding coverage, she said.
“They’re not going to pick on cancer survivors,” Hawk said of health insurance companies.
The same goes for Veronica Panagiotou, who said in September 2013 that her private insurance company refused to cover her because of her high BMI. Two months later, the 25-year-old uninsured graduate student was diagnosed with non-Hodgkin’s lymphoma. The hospital treated her and “sent me all the bills,” she recalled.
In January 2014, Panagiotou was able to purchase one of the first ACA plans to go into effect. This included chemotherapy and immunotherapy treatments, imaging tests, medications, hospitalization, weekly blood draws, transfusions, and emergency room visits.
Today, Panagiotou, 37, is cancer-free and works as director of advocacy and programs at Cancer Nation, a nonprofit advocacy group. Although she has coverage through her employer, Panagiotou said the costs associated with her treatment weigh on her life decisions.
“Every time I make a choice, I think about cancer,” she said.
Chris Bond, a spokesman for AHIP, a major health insurance trade group, said its members are working to improve access to insurance. But that can be difficult if doctors and drug companies are raising prices, he said. Bond said health plans are “trying to protect Americans from the full impact of these rising costs.”
Applications to the Lymphoma Research Foundation’s Patient Assistance Fund have increased 10% this year, CEO Megan Gutierrez said. “This trend suggests that financial safety nets, where they exist, are under strain,” she said. Brian Blades, president of the Republican-leaning think tank Paragon Health Institute, said rising prices are affecting everyone, regardless of the type of health insurance they have. “The biggest challenge for cancer patients is not the type of coverage,” he says. “That’s the fundamental cost of care.”
Blaise noted that President Donald Trump has focused on lowering drug prices as a potential benefit for cancer survivors. The Medicare Drug Price Negotiation Program, established by the Inflation Control Act of 2022, required the Department of Health and Human Services to negotiate prices on certain high-cost drugs to lower prices in the federal health insurance program for people age 65 and older. According to KFF, drugs to treat breast cancer, prostate cancer and kidney cancer are already on that list.
But Hoku worries that efforts to weaken the ACA’s protections and funding for marketplace programs will limit options for cancer survivors (who, she says, tend to “cling on to insurance for life”), especially when changing jobs or jobs.
Erin Jones, a 31-year-old food policy researcher in Fort Collins, Colorado, was diagnosed with Hodgkin lymphoma at a young age and is now cancer-free, but still sees two oncologists, visits a high-risk breast clinic, and undergoes annual breast MRIs. Jones has health insurance through the university where she works, but said she recently postponed enrolling in a doctoral program, in part due to uncertainty about affordability.
“I don’t have the freedom to easily do what I want because I’m always worried about health insurance,” she said.
According to a study published in 2020, costs associated with cancer survival, such as monitoring for recurrence and treating side effects, are expected to reach $246 billion by 2030, up from $183 billion in 2015.
According to the American Cancer Society, advances in both cancer detection and treatment have resulted in a higher percentage of people surviving five years or more after diagnosis. According to estimates, the number of survivors is expected to increase to more than 22 million by 2035.
Despite these advances, the cost of treatment could gain attention, said Ezekiel Emanuel, co-director of the Institute for Healthcare Transformation at the University of Pennsylvania and a former health policy adviser to former President Barack Obama.
Emanuel, the oncologist, said he has seen patients make difficult decisions about whether to delay or skip post-cancer treatment as a result.
“Even if we win, it looks like we won’t be able to have a celebration,” he said.
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