Victory for People Living with ALS on Drug Copay Assistance

Federal Government Drops Appeal Challenging D.C. Court's Decision to Make All Copays Count

WASHINGTON, D.C. (January 17, 2024) -- The Biden administration will drop its challenge of a recent court ruling on copay assistance. This is an important victory for all patients, including people living with ALS. The ALS Association has been a vocal advocate and mobilized grassroots support in favor of allowing the court ruling to stand so that patients are able to afford care they desperately need.

“This announcement is very welcome news for people living with ALS and their families as well as for other patients,” said Melanie Lendnal, Senior Vice President of Advocacy for the ALS Association. “Patients have been forced to pay thousands of dollars more because of predatory policies benefiting insurance companies. We are grateful to everyone who helped us advocate on behalf of people living with ALS and their families.” 

A 2021 federal rule allowed health insurers to not count drug manufacturer copay assistance towards a beneficiary’s out-of-pocket costs, known as “co-pay accumulator” policies, which could make it harder for patients to afford care they need. On September 29, 2023, the U.S. District Court for the District of Columbia struck down that rule. Just a few weeks later, the federal government appealed the decision, but reversed course on Tuesday after criticism from patient advocacy groups, including the ALS Association.

The ALS Association is part of a large coalition of patient advocacy organizations supporting estate laws prohibiting copay accumulator policies, which allowed health insurers to pocket the copay assistance patients receive, rather than allowing it to count toward deductibles. These policies force all patients to pay more for prescription drugs.

Ensuring coverage of ALS treatments is one of our top advocacy priorities. Since 2022, the ALS Association has been on the frontlines advocating against copay accumulator policies at both the federal and state level. As of Fall 2023, 19 states (along with D.C. and Puerto Rico) have enacted prohibitions on the use of copay accumulator policies.