National Survey Finds that Charitable Copay Assistance is a Critical Safety Net for Patients with Cancer and Autoimmune Disease

Even with Medicare, High Costs Impact Access to Treatment, Research Finds 

GERMANTOWN, Md — March 26, 2025 — The largest survey yet to examine seriously ill patients receiving charitable copayment assistance found high out-of-pocket costs impact access to health care, adherence to medication, and quality of life even for those on Medicare. 

The independent research, funded by the HealthWell Foundation, found that 31 percent of the 1550 respondents from across the United States said they would be forced to go without treatment if they lost their charitable copay support. Nearly all the patients in the study, published in Cancer, a journal published by the American Cancer Society, were insured by Medicare. 

“Many older Americans assume that Medicare will shield them from exorbitant costs if they become seriously ill,” said Jeffrey Peppercorn, MD, MPH, an oncologist at Massachusetts General Hospital, Associate Professor of Medicine at Harvard Medical School, and principal author of the study. “Yet many of the people we surveyed were not aware of the potentially catastrophic cost of care — or that cost could be a barrier to receiving medication prescribed by their doctor for a serious illness like cancer or autoimmune disease.” 

The survey focused on patients with cancer or serious autoimmune diseases such as multiple sclerosis (MS). It showed deep financial distress, with many patients with Medicare saying they had delayed important aspects of care because of the costs or were paying nearly 10 percent of their income on health costs, meeting the definition of being “underinsured.” Some skipped medical visits, scans or x-rays, and 37 percent reported reducing spending on food because of their health costs.  

Of those surveyed, 53 percent reported mild financial distress and 31 percent reported moderate to severe financial distress even after receiving charitable copayment assistance. 

Dr. Peppercorn said the survey shows that charitable copay assistance plays a critical role in enabling many Medicare patients with serious illnesses to gain access to treatment. Ninety percent of recipients worried about what would happen if they lost copay assistance.  

The research surveyed HealthWell grant recipients who consented to being surveyed and met HealthWell’s financial eligibility requirements. Sixty‐nine percent of respondents in the survey reported annual income of less than $60,000 per year; and 42 percent reported income less than $40,000. 

The survey helps illuminate the role of charitable copay assistance foundations in providing a safety net for patients with serious chronic illness. These foundations are non-profit and are regulated by the U.S. Department of Health and Human Services, Office of Inspector General (OIG), and are supported largely by donations from pharmaceutical manufacturers. The pharmaceutical funding has led some critics to question the impact of charitable copay assistance on overall costs of health care.  

Dr. Peppercorn said the survey was conducted to provide a better understanding of the experience of people receiving charitable copay assistance to inform the ongoing public policy. He is a consultant for HealthWell and receives research grant support to his institution. 

Suzanne Miller, Ph.D., an author of the study and Professor of Cancer Prevention and Control and Director of the Patient Empowerment and Decision-Making Department at Fox Chase Cancer Center/Temple University Health System, said little has been known about the role charitable copay assistance plays in access to care and financial distress. 

“The experience of patients needs to be part of the public discussion about charitable copay assistance,” said Dr. Miller. “This research adds considerably to the still sparse literature describing recipients of charitable copay assistance grants and shows the important role this assistance plays for patients in the American health care system.” Dr. Miller serves as the Vice Chair and Secretary to the HealthWell Board. 

HealthWell Foundation President and Chief Executive Officer, Michael Heimall, FACHE, called the research valuable. 

“This research shows in a powerful way what we at HealthWell regularly hear from our grant recipients: that without our support they would not be able to pay for the life-sustaining, and often lifesaving, medications they need,” Heimall said. “We are a critical safety net for underinsured Americans facing financially and emotionally challenging times.” 

Since 2003, HealthWell has provided over $2.4 billion in financial assistance to nearly 400,000 cancer patients. In addition to providing support for medications, HealthWell has a fund to help cancer patients with the costs of home care services and durable medical equipment, and one to support behavioral health services for oncology caregivers. The Foundation has provided more than $4.8 billion in financial support for cancer and other serious illnesses, including MS, since its founding. 

To learn more about HealthWell programs and our robust portfolio of disease funds, visit HealthWellFoundation.org. 

About the HealthWell Foundation  
A nationally recognized, independent non-profit organization founded in 2003 and a resource to the White House Cancer Moonshot Initiative, the HealthWell Foundation has served as a safety net across over 90 disease areas for more than 1.1 million underinsured patients. Since its inception, HealthWell has provided over $4.8 billion in financial support through more than 1.8 million grants to access life-changing medical treatments patients otherwise would not be able to afford. HealthWell provides financial assistance to adults and children facing medical hardship resulting from gaps in their insurance that cause out-of-pocket medical expenses to escalate rapidly; HealthWell assists with the treatment-related cost-sharing obligations of these patients. HealthWell ranked 24th on the 2024 Forbes list of America’s Top 100 Charities and was recognized for its 100 percent fundraising efficiency. For more information, visit HealthWellFoundation.org. 

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