A health insurance policy

More than half of insured adults were told by their health insurance plan in the past year that their medication for a chronic or rare disease was no longer covered, and 48% were referred to an external company to help them obtain the needed drugs.

“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,” said Amy Niles, chief mission officer at the PAN Foundation, a national charitable foundation and health care organization

According to a recent poll by the foundation’s Center for Patient Research, the most common methods that external companies used to obtain the medication include:

  • Importing the medication from an international pharmacy (44%); 
  • Securing the medication through a manufacturer’s patient assistance program (43%); and
  • Securing the medication through a charitable patient assistance foundation (40%).

Working with an external company led to significant delays for more than one-third of respondents. These include delays of between one and less than two months (13%); two to less than four months (15%); four to less than six months (3%); and six months or more (7%). These delays adversely affected the health of more than nine in 10 respondents, including both mental (36%) and physical health (32%). Delays resulted in unplanned visits to their health care professional (30%); other challenges in their day-to-day lives (29%); and having to visit the emergency room or urgent care (25%).

Slightly fewer than half of adults who worked with an external company to obtain their medications said their drugs eventually were covered through their health insurance plan. In other cases, the patient received support for the medication from a manufacturer's patient assistance program (42%); the medication was imported from outside the United States (32%); or the patient received financial assistance through a charitable foundation (32%). 

“The findings of our research indicate how prevalent these practices are, often referred to as alternative funding programs,” Niles said. “They can lead to increased out-of-pocket costs, adverse health effects and significant and even life-threatening delays in care. That's why we’re committed to educating policymakers and the public about the impact of these harmful policies and ensuring all patients can access the treatment they need.”

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