For years, I lived with psoriatic disease that covered 60 to 70 percent of my body in painful, scaly plaques. It was more than a skin condition – it was a daily battle that affected everything from my physical comfort to my mental health. Then, about two decades ago, a breakthrough treatment changed my life. My symptoms became manageable, and for the first time, I could focus on living, not just coping.
Thanks to my health insurance, I was able to afford the treatment that gave me my life back. I paid a nominal amount out of pocket at the pharmacy counter, about $5 or $10 a month, and in return, I stayed healthy and the aching scaly plaques were a thing of the past. That balance worked, until the system shifted beneath my feet.
Five years ago, my insurance company implemented a copay accumulator adjustment program without warning. The insurer still took my out-of-pocket payments all year long, but they would no longer apply the value of the copay assistance I was using to afford my treatment in a way that got me closer to my deductible. Overnight, my treatment became unaffordable. After the value of the copay assistance ran out, I was hit with a $1,600 bill, which represented my entire deductible. The copay assistance did nothing to get me closer to it. On top of that, I had to start paying 50% of the medication’s cost every month, capped at $600, just to stay on the medication that kept me healthy. From then on, my health insurance would only cover alternative treatments – not the proven one that I had been taking for years.
It didn’t take long for the financial shock to hit. I had to pull money out of savings just to stay on the treatment – and I’m one of the lucky ones that has savings to pull from.
This isn’t just my scenario. It’s the reality of countless Americans who have fallen victim to this systemic failure. For years, health insurance companies and pharmacy benefit managers (PBMs) have gotten away with using so-called “copay accumulator” and “copay maximizer” schemes to manipulate the way that copay assistance works for patients. Insurers and PBMs do it for financial gain, and in one such instance skirt federal law in the process.
The “Essential Health Benefits” protections are found within a larger provision in federal statute that requires health insurance plans to cover ten categories of services, including prescription drugs. The EHB provision was created to help patients afford their life-changing and life-saving medications, among other critical preventive health services.
Under the EHB provision of federal law, health plans, PBMs, and third-party vendors can redesignate some prescription drugs as “non-essential” and are no longer required to provide cost-sharing protections to patients. What insurers, PBMs, and vendors are doing is harming and will continue to harm patients, as their prescribed medications, often specialty medications without generic equivalents, are no longer covered as an essential benefit.
That’s why Washington must step in.
In 2024, the Department of Health and Human Services (HHS) and Department of the Treasury took a first step to issue a rule protecting patients with individual or small group health plans from the “EHB loophole”. However, the rule HHS and Treasury issued does not protect patients with large group or self-insured health plans, leaving thousands of patients vulnerable to a scheme that no longer treats their medications as essential. HHS, Treasury, and the Department of Labor have promised to issue this second rule to extend protections to all patients, but we have yet to see any follow through.
Every day Washington fails to act on this promise, more patients suffer. In 2023 alone, insurers and PBMs siphoned nearly $5 billion in copay assistance through copay accumulators and copay maximizer policies. It allows middlemen to cash in and puts patients like me in tremendously difficult financial and health situations.
The Trump Administration must act to protect Americans from this deceptive insurer and PBM practice that leads to skyrocketing out of pocket costs. If this loophole is closed, patients like me could see thousands of dollars returned to our pockets each year. Washington has an opportunity to help patients across the country, and it involves acting quickly to close the EHB loophole in federal law that allows this to happen.
Larry Bahr is a psoriasis patient and volunteer for the National Psoriasis Foundation (NPF). Larry lives in Fairfield, California.
