Insurance companies deny rare disease drugs to 54% of patients, survey finds
More than half of patients report that their medical plans have denied coverage for critical medications, particularly those required to treat chronic or rare illnesses.
In a poll by the PAN Foundation, a nonprofit that advocates for affordable healthcare, 54% of adults covered by commercial health insurance reported being informed at some point that the drugs they take for these conditions would no longer be covered.
Further, nearly half (48%) of respondents reported that their plans “referred them to work with an external company to obtain their medications,” resulting in treatment delays that led to negative health consequences.
These companies, often referred to as alternative funding programs (AFPs), are commonly used by payers to offset the cost of expensive drugs by allowing plans to deny coverage and steer members toward purchasing what is ostensibly supplementary insurance.
PAN said it conducted its surveys to better understand how often AFPs are deployed and how these programs impact patients' lives.
“AFPs are programs designed by companies and offered to employer-sponsored, self-funded health insurance plans to save the insurance company money,” the group noted. Adding that the programs are only used by commercial plans, such as those obtained through an employer or purchased on health insurance marketplaces.
Once referred to an AFP, fewer than half of individual respondents (39%) chose to work with them. Of those who did, approximately 40% reported experiencing a delay of a month or longer in accessing their medication. Additionally, several respondents noted that these delays affected their mental and physical health, ultimately disrupting their daily lives.
“It is deeply troubling that a significant number of people with a chronic or rare condition report a loss of health insurance coverage for a medically necessary medication and are being referred to work with external companies to gain access to their treatment, often causing significant delays,” Amy Niles, Chief Mission Officer at the PAN Foundation said in a statement.
Some patients advised to leave the country for treatment
When asked what AFPs did to alleviate the cost of expensive drugs, respondents told PAN that the programs attempted to obtain medications through manufacturer patient assistance programs, import drugs from outside the country or collaborate with charitable organizations that provide financial assistance.
In some cases (7%), patients reported being advised to travel to another country to receive treatment.
Responses were collected and analyzed from a cohort of 2,080 adults in the U.S., 1,033 of whom had commercial insurance. The full report from PAN is available here.
Chad is an award-winning writer and editor with over 15 years of experience working in media. He has a decade-long professional background in healthcare, working as a writer and in public relations.