‘Lose-lose-lose’ scenario: ASCO seeks reduced out-of-pocket costs for cancer care
Key takeaways:
- Out-of-pocket costs for cancer care such as deductibles and copays dissuade individuals from undergoing treatment.
- ASCO recommends eliminating out-of-pocket expenses for people undergoing active therapy.
Out-of-pocket costs like deductibles and copays deter people with cancer from complying with treatment.
This creates a “lose-lose-lose” scenario for patients, payers and employers, Clifford A. Hudis, MD, FACP, FASCO, CEO of ASCO, told Healio.
ASCO called on stakeholders and Congress to make multiple changes to the current health care system to reduce the burden of out-of-pocket expenses on patients, including the elimination of out-of-pocket expenses for patients in active cancer treatment and the end of copay accumulator adjustment programs.
“When a person has cancer, they’re not trying to score some cisplatin or doxorubicin,” Hudis said. “They’re not trying to take advantage of the system by getting extra scans or anything else. They are trying to control or cure their disease. They are following expert advice about how best to do it, and copays and out-of-pocket expenses are a barrier to quality care. These are irrational policies that have lived on for decades only because nobody’s been willing to grapple with them.”
Contributors to financial toxicity
Deductibles, copays and coinsurance all can cause financial toxicity.
Deductibles got introduced in the 1940s to limit unnecessary health care utilization. However, high-deductible plans— at least $1,600 — became more common with the Affordable Care Act, according to ASCO.
A 2022 survey showed approximately 30% of workers have a high-deductible plan. In 2024, ACA plans had an average deductible of $3,000.
“Many patients, especially those on public insurance programs such as Medicaid, struggle to afford additional medical expenses on top of essential goods such as food and shelter,” an ASCO position approved by the society’s board of directors in December reads. “According to one estimate, the average total cost of medical care and pharmaceuticals exceeds $42,000 in the year following a cancer diagnosis.”
Another study showed monthly out-of-pocket costs for a patient’s cancer care ranged from $180 to $2,600.
Additionally, cancer care can cause work disturbances, and there can be a lengthy waiting period for Social Security Disability Insurance.
“A Health Affairs survey found that 30% of Americans with a cancer history reported having difficulty paying off medical bills, borrowing money or filing for bankruptcy,” the position statement reads. “Moreover, those patients with cancer who are forced to declare bankruptcy possessed a nearly 80% greater relative mortality risk.”
On top of deductibles are copays, which can range from $10 to thousands per visit, and can be more expensive than the cost of drugs.
One study that analyzed nearly 10 million claims showed roughly 23% involved overpayments.
Hudis described a study published in Journal of Clinical Oncology in 2014 that showed individuals prescribed imatinib (Gleevec, Novartis) who had high insurance copays had a 70% higher likelihood of discontinuing treatment and 42% greater odds of skipping doses.
Patients also can pay coinsurance. Instead of a copay, individuals pay a portion of a bill after a deductible is reached but before the annual out-of-pocket maximum. However, coinsurance costs can reach thousands of dollars, potentially draining a patient’s financial resources.
The cumulative effect deductibles, copays and coinsurance have can create significant financial toxicity, which forces patients to make difficult decisions.
“The cost sharing that we’re talking about here has a consistent, predictable, anticipated effect, and it is a feature, not a bug,” Hudis said. “Compliance goes down as the out-of-pocket cost goes up and outcomes are worsened. This has been reported going back at least a decade and every stakeholder in our complex system loses.”
ASCO recommendations
ASCO made seven recommendations to reduce the burdens of out-of-pocket expenses:
- Eliminate out-of-pocket expenditures for patients getting active cancer care.
- Get rid of copay accumulator adjustment programs, which “prevent assistance program funds (usually distributed via coupons or vouchers) from applying to a patient’s out-of-pocket maximum or deductible,” according to the position statement.
- A patient’s payment for a prescription drug should be based on the rebated cost payers get.
- A cap should be put in place on Medicare Part B.
- More cost-sharing reductions for patients undergoing active cancer treatment who have ACA plans.
- Lower the maximum out-of-pocket limits for ACA-covered plans for patients getting active cancer treatment to prevent cost-sharing.
- More support for programs that help patients access expensive anticancer therapies.
The ‘dream’
These changes will not happen overnight, Hudis said.
However, he has seen steps that give him hope for the future, including capped insulin prices and a limit on Medicare Part D patient charges, which helps patients pay for drugs.
“If I thought it was impossible, we wouldn’t be doing this to start with,” he said. “You can’t be an oncologist and not be an optimist.”
Stakeholders and Congress should continue to chip away at the problem to reduce financial burdens for all parties, Hudis said.
“When there’s a disincentive to compliance, utilization falls either a little or a lot, and when you have more and more effective drugs, the downstream effects of low compliance are paradoxically greater harm and expense for everybody concerned,” Hudis said. “That patient who doesn’t treat their chronic leukemia optimally, ends up progressing to a more serious, expensive situation with greater illness sooner. When you look at the system as a whole, neither the payer, the employer nor the patient benefits from this situation. It’s a lose-lose-lose.”
Expanding access to care can decrease financial issues all around.
“Our dream is the elimination of cost sharing in the context of cancer care,” Hudis said. “More broadly, cost sharing should be eliminated in cancer care and screening, and even more broadly, for other serious illnesses. Fundamentally, we don’t believe that the copay is rational in the context of effective evidence-based medicine.”
References:
- American Society of Clinical Oncology position statement: Out-of-pocket costs for cancer care. Available at: https://cdn.bfldr.com/KOIHB2Q3/as/m685rhhtkhk7h4nmhtrxm9hz/Out-Of-Pocket-Costs-Position-Statement. Published Jan. 23, 2025. Accessed Feb. 3, 2025.
- Dusetzina SB, et al. J Clin Oncol. 2014;doi:10.1200/JCO.2013.52.9123.
For more information:
Clifford A. Hudis, MD, FACP, FASCO, can be reached at clifford.hudis@asco.org.
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