While it appears that the worst of the pandemic is behind us, as everyone in the medical community knows, there’s always a crisis looming on the horizon. One that was beginning to build pre-pandemic and is now threatening to crest is the unaffordability of prescription drugs.

Medical providers take several factors into account when prescribing treatments for patients: availability, ease of administration, and potential side effects. It’s infuriating, however, that we must consider a patient’s ability to pay for a treatment we know would be the most effective. This isn’t about generic vs. brand – this is about patients having to settle for older drugs vs. modern specialty medications with no generic alternative because insurers and pharmacy benefit managers (PBMs) have cooked up a new way to put innovative medicines out of reach: copay accumulator programs.

It’s no secret that many medications used to treat chronic diseases come with a high price tag. In the past, the cost has been shared between patients and insurers with patients often getting financial help from a third party (charities or even drug manufacturers sending coupons) to help defray the cost. But for plans with a copay accumulator, insurers don’t have to count any financial assistance towards a patient’s out-of-pocket obligations. So, insurers and PBMs have quietly inserted copay accumulators into more and more plans to a) force patients onto a medication that costs less, but isn’t as effective or b) allow them to pocket the patient’s financial assistance.

This practice has incredible implications for those living with chronic illnesses. Take, for example, someone living with cystic fibrosis (CF). For babies born with CF, it used to be that their treatment options were limited, and life expectancy topped out at puberty. Over the last few decades, more treatments were found that added a year here and there. Then, five years ago, CFTR modulators were discovered, which can not only increase life expectancy by more than a decade but also reduce the length and frequency of daily treatments needed to manage symptoms. It’s amazing. However, plans with copay accumulators don’t allow financial assistance to count toward any CFTR modulators. How can insurers be allowed to deny access to treatments that result in years more of life?

Living with and treating chronic disease is hard enough without having to worry that an insurer or PBM will make it difficult to access and afford effective modern treatment options.

We need to act now. That’s why the Rhode Island State Nurses Association has joined health providers and patient advocacy organizations across the nation to advocate for legislation – H.R. 5801, the Help Ensure Lower Patient (HELP) Copays Act – to require health plans and PBMs to apply co-pay assistance benefits to the patient’s deductible and out of pocket maximums. We are urging the Rhode Island delegation to support this vital fix. Let’s make sure that patients are getting the care they need and deserve.

Donna Policastro is the Executive Director of the Rhode Island State Nurses Association