Every day, thousands of Americans depend on co-pay assistance programs to access life-saving specialty medications. As the mother of four children, all of whom suffer from a chronic and rare bleeding disorder that impairs their bodies’ ability to clot blood, I am one of those Americans whose only lifeline to accessing my children’s treatments is with the help of co-pay assistance dollars.
Due to the rare nature of many chronic conditions like bleeding disorders, there are rarely any generic or biosimilar-equivalent drugs available. Instead, patients rely on brand-name specialty medications, which typically have costs that will exceed the maximum annual out-of-pocket ($8,550 individual or $17,100 for a family) during the first month of the calendar year. Additionally, many families are paying soaring health insurance premiums to ensure they have access to important health care services.
Co-pay assistance programs are savings programs offered by drug makers that help patients cover the costs of these vital medications by reducing their out-of-pocket costs. When using co-pay assistance, an insurer typically pays their set proportion of the drug’s cost and the co-pay card covers part, or all, of the portion that the patient is responsible for.
Unfortunately, families like mine have fallen victim to schemes implemented by commercial health insurance companies and pharmacy benefit managers (PBMs) designed to take that savings for themselves. These schemes are called “co-pay accumulator adjustment programs” and “co-pay maximizer programs.” Rather than applying the co-pay assistance dollars to the members’ annual cost share, they allow health plans or PBMs to pocket the money instead. Once the annual co-pay assistance is drained, families’ out-of-pocket costs are reset as if they were never touched.
My family’s co-pay assistance will reach its limit in March — which means we will be forced to meet the entire out-of-pocket share again, before gaining access to my children’s treatments.
Remember, the maximum out-of-pocket cost in 2021 is $8,550 for an individual or $17,100 for a family.
It goes without saying that co-pay accumulator adjustment programs and co-pay maximizer programs can have swift and severe consequences for families that have been subjected to these practices in our state and across the nation. These policies do not serve the best interest of patients and families who struggle under the weight of the costs, especially with the current economic impact from COVID-19. In fact, the most vulnerable populations are placed at risk, while pharmacies and health plans profit from the money.
But there is hope.
The Oregon Legislature is considering bipartisan legislation to protect patients — particularly those with rare and chronic diseases — from co-pay accumulator schemes. Senate Bill 560, sponsored by Sens. Sara Gelser (D-Corvallis) and Tim Knopp (R-Bend), would ensure that co-pay assistance supports the needs of patients by ensuring those resources count toward out-of-pocket maximums and other cost-sharing requirements.
Oregonians would be well served if others join them to ensure patients have affordable access to life-saving treatments by prohibiting PBMs and health insurers from profiting off vulnerable families suffering from chronic diseases.
Madonna McGuire Smith is the executive director of Pacific Northwest Bleeding Disorders (formerly the Hemophilia Foundation of Oregon) and lives in Corvallis.