They’re in Remission, but Their Medical Bills Aren’t: Cancer Survivors Navigate Soaring Costs

Practically 4 years after docs declared Marielle Santos McLeod freed from colon most cancers, she has but to really feel liberated from the burden of medical bills.

McLeod, who lives close to Charleston, South Carolina, continues to be paying off chemotherapy payments that adopted her 2017 prognosis. She additionally now faces an onslaught of out-of-pocket prices for follow-up monitoring and care, together with common visits to a pulmonologist and allergist.

McLeod, 45, stated she had already spent $2,500 within the first two months of the 12 months and owes an extra $1,300 from a January colonoscopy. That’s on high of the $895 month-to-month premium for a medical health insurance plan that covers her household of six.

These prices have led McLeod to ration her different care. Regardless of feeling intense chest ache since February, for instance, she is laying aside a CT scan and a go to to a coronary heart specialist.

“You’re compelled to select and select as to the place your priorities actually must be,” stated McLeod, director of strategic applications and partnerships on the Most cancers Hope Community, a nonprofit that helps most cancers sufferers. Even in that position, she struggles to navigate the monetary aftermath of surviving the illness.

The price of postcancer care usually “retains us hostage,” she stated.

McLeod is certainly one of almost 19 million U.S. most cancers survivors, lots of whom proceed to want prescriptions, physician visits, and procedures to observe their situation and handle posttreatment unintended effects. Of greater than 1,200 most cancers sufferers and survivors surveyed in 2024, about 47% stated they’d carried medical debt, with almost half having owed greater than $5,000, in line with the American Most cancers Society Most cancers Motion Community.

But well being coverage researchers and affected person advocates stated the experiences of most cancers survivors reveal the boundaries of the Trump administration’s proposals to decrease premiums, which can not assist sufferers who accumulate giant medical payments 12 months after 12 months. The proposals heart on growing the supply of high-deductible well being plans, which have decrease month-to-month funds however require sufferers to pay hundreds of {dollars} out-of-pocket earlier than protection kicks in.

As well as, the administration has supported permitting insurers extra leeway to promote plans that aren’t compliant with the Inexpensive Care Act. Such plans might bar individuals who have preexisting well being circumstances, like a most cancers prognosis, and exclude important advantages that ACA plans are required to cowl.

The administration didn’t reply a request for touch upon how its proposals would have an effect on most cancers survivors. However its supporters say, usually, folks would have extra flexibility to personalize protection and extra choices for plans with decrease month-to-month charges.

Michael Cannon, director of well being coverage research on the Cato Institute, a libertarian assume tank, believes sufferers would have higher management over spending, and the choice to decide on what sort of care will get coated, if well being plans had been exempted from the ACA’s rules. An individual might go for a plan that features most cancers remedy however not maternity care, for instance.

Historical past proves insurance coverage protection will not be that straightforward, particularly for folks with preexisting circumstances, stated Jennifer Hoque, an affiliate coverage principal with the American Most cancers Society Most cancers Motion Community. When well being plans might “decide and select” enrollees based mostly on preexisting circumstances previous to the ACA, folks needing the most costly care usually struggled to search out protection, she stated.

“They’re not going to decide on a most cancers survivor,” Hoque stated of well being insurers.

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That was the case for Veronika Panagiotou, who stated personal insurers refused her protection again in September 2013 as a result of she had a excessive physique mass index. Two months later, as a 25-year-old uninsured graduate pupil, she was identified with non-Hodgkin lymphoma. The hospital handled her, she recalled, “and despatched me all of the payments.”

In January 2014, Panagiotou was in a position to purchase one of many first ACA plans that went into impact. It coated chemotherapy and immunotherapy remedy, imaging, drugs, hospital stays, weekly blood attracts, a blood transfusion, and emergency room visits.

Now Panagiotou, 37, is cancer-free and works as director of advocacy and applications at Most cancers Nation, a nonprofit advocacy group. Though she is roofed by her employer, Panagiotou stated treatment-related bills weigh closely on her life selections.

“Each alternative I make, I take into consideration most cancers,” she stated.

Chris Bond, a spokesperson for AHIP, the primary medical health insurance commerce affiliation, stated its members are working to enhance entry to protection. However that may be a problem when docs and drugmakers are mountaineering costs, he stated. Well being plans try to “defend Individuals from the complete affect of these rising prices,” Bond stated.

The Lymphoma Analysis Basis has seen a ten% enhance in purposes to its affected person assist fund this 12 months, CEO Meghan Gutierrez stated. “This trajectory means that monetary security nets, once they exist, are straining,” she stated.

Rising costs are affecting everybody, whatever the type of medical health insurance they’ve, if any, stated Brian Blase, president of Paragon Well being Institute, a Republican-aligned assume tank. “The largest problem for most cancers sufferers isn’t the kind of protection,” he stated. “It’s the underlying value of care.”

Blase pointed to President Donald Trump’s give attention to decreasing drug costs as doubtlessly useful to most cancers survivors. The Medicare Drug Worth Negotiation Program, established by the Inflation Discount Act of 2022, required the Division of Well being and Human Providers to barter costs for sure high-cost medicine, to decrease costs for the federal medical health insurance program for folks ages 65 and older. Medication for breast, prostate, and kidney cancers are already on that listing, in line with KFF.

But Hoque fears efforts to weaken ACA protections and monetary assist for market plans will give most cancers survivors — who she stated are likely to “dangle on to insurance coverage for expensive life” — fewer choices, particularly between jobs or throughout profession modifications.

Erin Jones, a 31-year-old meals coverage researcher residing in Fort Collins, Colorado, who was identified with Hodgkin lymphoma as a younger grownup, is now cancer-free however nonetheless sees two oncologists, visits a high-risk breast clinic, and will get a breast MRI yearly. Jones will get medical health insurance by the college the place she works, and stated she just lately deferred acceptance to a PhD program partly as a consequence of uncertainty over inexpensive protection.

“I don’t have the liberty to do the issues I need to do as simply,” she stated, “as a result of I’m continually apprehensive about medical health insurance.”

Prices associated to surviving most cancers, together with monitoring for recurrence and remedy of unintended effects, had been anticipated to succeed in $246 billion by 2030, up from $183 billion in 2015, in line with analysis revealed in 2020.

Developments in each detecting and curing most cancers have resulted in a better proportion of individuals surviving 5 years or extra after prognosis, in line with the American Most cancers Society. The variety of survivors is anticipated to develop to greater than 22 million folks by 2035, estimates present.

Regardless of these developments, the price of remedy can steal the highlight, stated Ezekiel Emanuel, a co-director of the Healthcare Transformation Institute on the College of Pennsylvania and a onetime well being coverage adviser to former President Barack Obama.

An oncologist, Emanuel stated he had noticed sufferers make the tough determination to delay or skip postcancer care in consequence.

“Even after we triumph,” he stated, “we don’t appear to have the ability to have a celebration.”

Are you struggling to afford your medical health insurance? Have you ever determined to forgo protection? Click on right here to contact KFF Well being Information and share your story.