Many Medicare Enrollees Can’t Afford Cancer, Specialty Drugs

Large numbers of Medicare beneficiaries who are ineligible for low-income subsidies and have been prescribed high-price prescription drugs for conditions such as cancer don’t initiate their treatment, likely because they can’t afford it, according to new research published in Health Affairs. One of the study’s authors tells AIS Health that severe illness is a possible outcome of noninitiation in the studied clinical areas and adds that proposals under consideration in Congress to cap out-of-pocket spending for Medicare beneficiaries would make a big difference to the affected patients.

According to the paper, “among beneficiaries without subsidies, we observed noninitiation for 30 percent of prescriptions written for anticancer drugs, 22 percent for hepatitis C treatments, and more than 50 percent for disease-modifying therapies for either immune system disorders or hypercholesterolemia.”

Financial Assistance Is Critical

The study’s authors reviewed over 17,000 prescriptions for treatment in those clinical areas issued between 2012 and 2018 that were written for Medicare Part D beneficiaries, and defined noninitiaton as “failure to start treatment with a newly prescribed drug, as evidenced by failure to fill the prescription.” The study indicates that seniors living near but above the poverty line, who do not qualify for Medicaid or another public program that subsidizes their drug costs, do not have the means to pay for drugs that they would be able to afford if they did have assistance.

As the study put it, “despite their higher incomes and assets, beneficiaries without low-income subsidies more frequently failed to initiate treatment as prescribed than those with low-income subsidies. That differential is likely due to the stark difference in expected out-of-pocket expense for treatment among those with versus without a low-income subsidy. For example, under the 2021 standard benefit…a single fill for the cancer drug lenalidomide would cost more than $3,000 out-of-pocket for a person without a low-income subsidy, but less than $10 out of pocket for a person with a full low-income subsidy.”

Stacie Dusetzina, Ph.D., an associate professor at Vanderbilt University Medical Center, tells AIS Health that a similar phenomenon also affects members of commercial insurance plans.

“The pattern of non-initiation that we observed is likely to also occur for people who have very high drug deductibles on their commercial health plans or who have very high out-of-pocket spending limits. That said, the existence of an out-of-pocket cap may make it more likely that people initiate treatment since they have an upper limit on how much they will spend each year,” Dusetzina tells AIS Health, a division of MMIT, via email. “There is a paper from a few years ago that looks at abandonment of cancer drugs and shows that about half of people will leave their drugs behind at the pharmacy if their out-of-pocket costs exceed $2,000. That study included commercially insured people, so we know that the general phenomenon — when the price is very high people will not fill — is true for both Medicare beneficiaries and commercially insured beneficiaries.”

Patients Are Harmed by Noninitiation

When asked, Dusetzina said that the research group was unable to determine whether noninitiation caused patients to die sooner than they should. She tells AIS Health that “we couldn’t test this directly in our study, but many of the drugs that we include are used for very serious illnesses and are known to either improve survival or to modify disease progression. Given the very high rates of patients not starting drugs prescribed for them, we assume that some people are harmed by not being able to start the large number of products we studied.”

Some participants in the drug price reform debate, particularly plan sponsor trade groups, have argued that capping out-of-pocket spending in Medicare won’t address the problem of rising drug prices. Dusetzina agrees, but says those arguments miss the point.

“I agree that we need to address prices overall and prices for consumers; capping out-of-pocket spending alone would shift those costs to consumers in the form of higher premiums in the long run,” Dusetzina says. “That said, recent proposals to fix the Medicare Part D benefit include significant changes to the benefit that should help to lower Medicare spending and, at the same time, make drugs more affordable for patients. The benefit today doesn’t provide nearly enough protection for people who need very high cost drugs. These types of illnesses are why we all have health insurance in the first place — to make sure that if we need these expensive treatments that we can afford them.”

Contact Dusetzina at

Many Medicare Part D Beneficiaries Fail to Obtain Specialty Drugs Due to Costs

By Jinghong Chen

Fee-for-service Medicare beneficiaries who received low-income subsidies were almost twice as likely to initiate treatment with expensive Part D drugs newly prescribed within 90 days as those without subsidies, according to a study published in Health Affairs. The rate of noninitiation — patients not filling drugs that were prescribed to them — averaged 39.4% across four conditions studied. Among beneficiaries without a subsidy, one in three did not fill their anti-cancer drugs and over half did not fill treatments for immune system disorders or hypercholesterolemia. The study’s findings suggest the need for “legislative efforts to increase the accessibility of high-price medications by reducing out-of-pocket expenses,” researchers concluded.


NOTES: “Social Deprivation Index” captures ZIP code–level markers of lower socioeconomic status (SES) and ranges from 0 to 100, where higher scores represent greater deprivation. “Combined Comorbidity Score” is a validated measure that combines conditions in the Charlson and Elixhauser measures for predicting short- and long-term mortality among Medicare beneficiaries. The study designates each patient’s first observed prescription of a high-price specialty drug as the index prescription.

SOURCE: “Many Medicare Beneficiaries Do Not Fill High-Price Specialty Drug Prescriptions,” Health Affairs 41, NO. 4 (2022): 487–496.

This story and infographic were reprinted from AIS Health’s biweekly publication RADAR on Drug Benefits.

© 2024 MMIT
Peter Johnson

Peter Johnson

Peter has worked as a journalist since 2011 and has covered health care since 2020. At AIS Health, Peter covers trends in finance, business and policy that affect the health insurance and pharma sectors. For Health Plan Weekly, he covers all aspects of the U.S. health insurance sector, including employer-sponsored insurance, Medicaid managed care, Medicare Advantage and the Affordable Care Act individual marketplaces. In Radar on Drug Benefits, Peter covers the operations of (and conflicts between) pharmacy benefit managers and pharmaceutical manufacturers, with a particular focus on pricing dynamics and market access. Before joining AIS Health, Peter covered transportation, public safety and local government for various outlets in Seattle, his hometown and current place of residence. He graduated with a B.A. from Colby College.

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