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House of Representatives
Session of 2021 - 2022 Regular Session


Posted: May 3, 2021 03:40 PM
From: Representative Barbara Gleim and Rep. Mark Longietti
To: All House members
Subject: Co-Pay Accumulator Reform Measure (SB196 of 2021 Sen. Ward & Sen. Blake)
As House Co-Chairs of the Pennsylvania Rare Disease Caucus we plan to introduce legislation requiring insurers or pharmacy benefit managers (PBM) to count any amounts paid by the enrollee or paid on behalf of the enrollee by another person (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 rare and chronic illnesses 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 copay 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 PBM’s 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 copay card or coupon. Enrollees are then forced to choose between paying their full deductible and accessing their treatment or paying for food and rent. Thus, copay accumulator programs basically shifts the cost onto the enrollee while only benefiting the health insurers or PBM’s.
Unexpected costs imposed by copay accumulators can cause patients to delay treatment or forgo medication. According to the National Organization for Rare Disorders, “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. 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.”
The measure seeks to end the discriminatory practice of copay accumulator programs being implemented by health insurers and PBM’s by requiring them to count discounts enrollees get through drug payment assistance programs as paying off their out-of-pocket obligations. Virginia, West Virginia and Arizona recently enacted laws allowing drug discounts to count towards an enrollee’s deductibles and out-of-pocket limits.
The Immune Deficiency Foundation (IDF) is supportive of this measure. Click on the IDF link to watch a video and learn more about addressing co-pay accumulators.
Please join us in co-sponsoring this important legislation aimed at helping individuals with rare and chronic diseases maintain their access and affordability to specialty drugs that are critical to their health and well-being.