As Senate Co-Chairs of the Pennsylvania Rare Disease Caucus, we plan to reintroduce Senate Bill 372 of last session. This legislation requires insurers or pharmacy benefit managers (PBMs) to count any amounts paid by the enrollee or paid on behalf of the enrollee by another party (i.e., drug manufacturer) when calculating an enrollee's overall contribution to the plan’s deductible or out-of-pocket limit.
 
In an effort to help individuals with a  rare and chronic illness afford special prescription medications to manage their health condition, drug manufacturers have offered co-pay assistance programs that alleviate a person’s out-of-pocket obligation. Individuals rely on co-pay coupons or discounts provided by manufacturers, which cover a significant amount of their deductible and coinsurance. Such co-pay coupons or discounts for chronic diseases (i.e., primary immunodeficiency diseases (PI), cancer, kidney disease, multiple sclerosis, HIV, rheumatoid arthritis) represent a lifeline by making medications more affordable for individuals and increases access to prescribed treatments.
 
Unfortunately, many health insurers and PBMs have implemented a practice commonly known as “co-pay accumulator programs,” which effectively prevents a drug manufacturer’s payments from counting toward an enrollee’s deductible, causing many to reach a “cost cliff” mid-year after using the entire amount of the co-pay card or coupon. Enrollees are then forced to choose between paying their full deductible and accessing their treatment or paying for food and rent. Co-pay accumulator programs shift the cost onto the enrollee while only benefiting the health insurers or PBM’s.
 
Unexpected costs imposed by co-pay accumulators can cause patients to delay treatment or forgo medication. According to the National Organization for Rare Disorders, “The evidence against co-pay 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 co-pay accumulators, regardless of the intent, will disproportionately impact rare disease patients and their families.”
 
This legislation seeks to end the discriminatory practice of co-pay accumulator programs being implemented by health insurers and PBMs. It requires them to count discounts enrollees get through drug payment assistance programs as paying off their out-of-pocket obligations. Fourteen states have already enacted similar legislation allowing drug discounts to count towards an enrollee’s deductibles and out-of-pocket limits.
 
Co-sponsors of Senate Bill 372 were Senators Bartolotta, Brooks, Cappelletti, Comitta, Costa, Haywood, Kearney, Pennycuick, Schwank and Tartaglione.

Please join us in co-sponsoring this important legislation.  If you have questions regarding this legislation, please reach out to Greg Beckenbaugh in my office at 717-787-5490 or gbeckenbaug@pasen.gov.