Have you ever experienced the frustration of going to the pharmacy to collect a prescription, only to be faced with the harsh reality that you cannot afford your copay? Sadly, this scenario is all too common and underscores the systemic challenges many patients face when accessing essential medications.
Reflecting on personal experience, my late father was born with hemophilia B, a hereditary disorder that requires regular infusions to control bleeding episodes. Without these infusions, he experienced severe pain, joint damage, and life-threatening complications. The treatments Californians living with bleeding disorders and other chronic conditions take aren’t a luxury, but a matter of survival, yet the associated costs can be out of reach for most patients.
Research shows that when faced with a copay as high as $250, more than 70% of patients find themselves unable to cover the cost of their medication. To help ease out-of-pocket costs, many rely on patient assistance programs. These assistance programs enable pharmaceutical manufacturers and nonprofits to help alleviate high copay costs for patients, which in turn helps them afford and adhere to their medications. A 2021 survey found that 69% of those who depend on patient assistance programs make less than $40,000 a year.
Unfortunately, health insurers and Pharmacy Benefit Managers are effectively blocking this assistance with the use of copay accumulator adjustment policies (CAAPs), which are prevalent in 83% of commercial health plans. The detrimental impact of CAAPs on those living with chronic and rare diseases cannot be overstated. These policies exclude any copay assistance from counting toward a patient’s deductible or out-of-pocket maximum, which makes it difficult or nearly impossible for them to get the medications they need.
Since many of these policies are hidden within health insurance coverage documents, most patients are caught off-guard several months into the plan year when their financial assistance has run out, and they learn that they have not met their annual deductible. When they attempt to refill a prescription or get other health care, they may be faced with a bill for thousands of dollars.
When patients are unable to adhere to their treatment, they risk worsening their health — in some cases, irreversibly. These practices undermine coverage for pre-existing conditions, hurt patient access to medicines, decrease drug adherence, and cost our health care system more money.
California has an opportunity to join 20 other states, plus Washington, DC, and Puerto Rico, in eliminating CAAPs by passing Assembly Bill 2180. Introduced by San Diego Assemblymember Akilah Weber, AB 2180 will ensure that health insurance plans and pharmacy benefit managers count the value of copay assistance toward a patient’s deductible. The goal of this bill is to safeguard vulnerable patients from unnecessary costs and ensure they can access the necessary treatments and medications their doctors prescribe.
We cannot expect to help improve care for Californians living with chronic and rare diseases without cutting barriers like CAAPs out of the picture. If it’s still hard to understand, imagine you or a loved one not only living with a persistent chronic disease, but also having to experience the choice between going into debt or surviving.
AB 2180 is the exact legislation we need to address these issues and to ensure fair, accessible, and affordable lifesaving care for patients. It’s time patients receive the full benefits of copay assistance without facing any roadblocks from insurers or pharmacy benefit managers. Their lives depend on it.
Lynne Kinst is the executive director of the Hemophilia Council of California and a steering committee member of the California Rare Disease Access Coalition.