Rare Daily Staff

The National Organization for Rare Disorders is sounding the alarm on the introduction of new programs by health insurers that can shift thousands of dollars in annual drug expenses to patients.

Some health insurance plans have started to implement so-called “co-pay accumulator programs.” These programs prevent manufacturer-provided co-pay assistance from applying to patients’ out-of-pocket costs, including their insurance deductible. The consequence of this is that these programs increase the amount of money patients pay over the course of a year for prescription medicines.

“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,” NORD said in a statement it issued about these programs. “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.”

Because many patients in the rare disease community have not been made aware of these programs NORD is concerned that some patients will soon be faced with an entirely unexpected and exorbitant bill for their medication.

The organization does not how many plans are using co-pay accumulator programs, but believe it is limited at this time. It advises patients to contact their health plans to find out if they have implemented such programs or plan to do so. People with employer-based healthcare coverage can contact their human resources department. You can view NORD’s overview on co-pay accumulator programs and what they mean for patients on the organization’s website.

NORD said it is working with other patient organizations to advocate against the implementation of such programs and to propose solutions at the state and federal level.

June 4, 2018