Washington, D.C., June, 4, 2018 —The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on the increasing use of copay accumulator programs in health plans:
“Recently, a number of health plans have started implementing, what are broadly known as, ‘copay accumulator programs.’ These programs prevent manufacturer-provided copay assistance from applying to patients’ out-of-pocket costs, including their insurance deductible. As a result, copay accumulator programs drastically increase the amount of money patients pay over the course of a year to acquire their prescribed medications.
The National Organization for Rare Disorders (NORD) strongly opposes the implementation of copay accumulator programs in order to protect rare disease patients from untenable increases in their health care costs. The evidence against copay accumulators is clear: numerous studies have demonstrated that substantial increases in prescription drug out-of-pocket costs leads to patients abandoning treatment and suffering worse health outcomes. Rare disease therapies tend to cost more than other classes of drugs because of their smaller patient populations. Therefore, the harmful effect of copay accumulators, regardless of the intent, will disproportionately impact rare disease patients and their families.
NORD is further troubled by the fact that many in our community have not been made aware of these programs and what they do, meaning some patients will soon be faced with an entirely unexpected and exorbitant bill for their medication. It is reprehensible that these programs secretly and entirely unnecessarily raise costs for our unsuspecting patients, leaving them bewildered as to what has happened.
In order to raise awareness of these programs and the harm they will cause to many in the rare disease community, NORD has created a short explanation of the issue for patients and their families (view the document here). In addition, NORD is partnering with organizations that represent other patient communities affected by copay accumulators to stop further implementation of these programs and identify solutions for those already affected. We will continue our efforts to educate our community and prevent these programs from inflicting harm on our patients and families.”