Copay Assistance is Not Going Towards Patient Deductibles Thus Leaving People With Out-of-Pocket Costs

Wendy Dann was diagnosed with MS in 2009. She has had varying symptoms such as weakness in her left leg, issues with cognitive functioning, swallowing, and grasping with her hands. She is a theater professor at Ithaca College and playwright, and despite her ongoing health issues, she still feels fortunate. She has been stable on her therapy for several years.

As someone who has a chronic condition, Wendy has been on a number of treatments including glatiramer acetate injection (Copaxone), Fingolimod (Gilenya), and most recently, ocrelizumab (Ocrevus), which is a twice-a-year infusion and costs $78,000 annually without insurance. She also takes duloxetine (Cymbalta) for nerve pain.

Her out-of-pocket costs are significant. To help patients like Wendy, there are copay accumulator programs, which were developed by pharmaceutical manufacturers, and are supposed to go towards patients' deductibles. However, a more recent development has medical insurers collecting this copay assistance from pharmaceutical manufacturers, but the insurers are now not counting the copays towards deductibles, leaving patients with high out-of-pocket costs.

"I think that anyone who lives with a chronic illness can tell you there's all kinds of costs associated with being ill or disabled,” said Wendy.

For patients like Wendy who have chronic conditions and rely on medicines on a regular basis, the rise in prescription pricing continues, and people are being asked to share more of the costs with these aforementioned programs. In the 2026 Notice of Benefit and Payment Parameters rule proposed last fall, the Biden administration failed to include new regulations on whether copay assistance will count as part of patient cost-sharing.

The patient advocacy organization, the HIV+Hepatitis Policy Institute, asked the Biden-Harris administration to comply with the US District Court ruling that struck down the rule that allows insurers not to count copay assistance towards a patient’s out-of-pocket costs. In extensive comments submitted on the 2026 Notice of Benefit and Payment Parameters Proposed Rule (Proposed NBPP Rule), the patient organization, which was the lead plaintiff in the successful litigation against the US Department of Health and Human Services, argued that not only must the federal agencies comply from a legal standpoint, but that it is the right thing to do for the American people as they struggle to afford their prescription drugs.

In a previous interview with Contagion, Carl Schmid, executive director of the HIV+Hepatitis Policy Institute discussed the federal courts 2022 decision on copay assistance, and the Biden administration’s decision to not enforce the court's ruling.

“I guess they're getting pressure from the big insurers and the big PBMs. And you know what I'm hearing is that the insurers are saying this leads to higher drug prices. And you know, the Biden administration has really prided itself on taking on Big Pharma and lowering drug prices. Well, this is the perfect example to lower drug prices. And I don't think they understand it,” Schmid said.

Read more: Patients Left to Cost-Sharing for Therapies Without Federal Government Intervention

In terms of resolving this issue, there are two approaches, both from the state and federal levels that Wendy would like to see done.

"Let me start at the state level, because at the state level, a lot of states have already banned copay accumulator programs. I live in New York State, and New York State has actually banned this practice statewide,” Wendy said. “However, that doesn't actually solve the problem entirely, because a lot of these large employer sponsored insurance plans are regulated by the federal government rather than the state government, so my employer doesn't have to abide by state law. So I'm falling into this loophole, even though New York State has banned it.”

From the federal level she mentions the aforementioned adjudicated ruling that the federal court decided on but is not being enforced. In addition, there is a prospective bill in Congress called the HELP Copays Act.

"The HELP Copays Act would basically ensure that the copay assistant payments that patients receive have to count toward the employee's annual cost sharing requirements. So if I got that help, it has to apply. That act has stalled out, and I think we really need some help moving that forward.”