After living with constant sickness since I was 12, finally being diagnosed with a form of autoimmune arthritis called ankylosing spondylitis at 19 marked the beginning of my chronic illness journey. Managing my symptoms is a constant challenge that is compounded by red tape that patients encounter when trying to afford necessary medications. Thankfully, drug manufacturers offer patient assistance programs that can help patients like me afford our annual health plan copays to pay for our medications. That is, unless your health insurance plan has hidden a copay accumulator in the fine print of your contract.
In 2022, I carefully reviewed the contract of my insurance plan only to discover, buried in complicated language, that my patient assistance funds were not being applied to my copayment cost obligation because my health plan had a copay accumulator policy. Copay accumulators prevent patient assistance funds from counting towards patient’s deductibles, copays, or co-insurance, which extends deductibles and out-of-pocket expenses beyond patients’ expectation.
The effect of copay accumulators on chronically ill patients is devastating. Instead of insurance coverage kicking in after patient assistance funds are applied, I found myself responsible for more out-of-pocket expenses than I anticipated. The insurer essentially claimed that, despite paying for my medication using funds from my patient assistance program, I still owed money for medications out of my own pocket until I met my deductible. This surpassed what should have been my annual maximum out-of-pocket spending limit. For patients like me, this situation could lead to a financial crisis and potential delays in receiving necessary medications.
Millions of Americans with chronic illnesses share this struggle. Copay accumulator policies disproportionately impact those relying on specialty, brand-name medications without generic or biosimilar alternatives. When I discovered that my patient assistance program funds were not applied to my out-of-pocket maximum cost obligation, I had to find additional money in my budget, forcing me to cut back on beneficial complementary therapies, which reduced my overall quality of life.
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To ensure patient assistance programs benefit patients as intended, 20 states, Washington, D.C., and Puerto Rico have passed laws mandating that all payments made by patients – whether funded by patient assistance programs or not — count toward the patient’s out-of-pocket maximum cost.
Insurers and PBMs oppose these bills, claiming that if they become law then state insurance premiums will rise at a higher rate for everyone. However, new research from the Global Healthy Living Foundation demonstrates that this claim isn’t true.
Legislation banning accumulators has not resulted in increases to state health insurance premiums beyond what has been seen in states without this legislation.
In California, Assemblymember Akilah Weber introduced AB 2180 to ban accumulators and keep patient assistance funds as intended—to benefit patients, not insurance company bottom lines. Please join me in advocating for AB 2180.
Victoria Killian, a resident of Canoga Park, California, is a member of the Patients Rising Patient Senate and sits on the Advocacy Committee at the Spondylitis Association of America.