Tami Seretti: My copay assistance no longer counts — yours may be next

In 1996 I was diagnosed with psoriasis, a chronic, immune-mediated disease that impacts more than 3% of the U.S. adult population. Early on in my journey, raised plaques and scales covered 85% of my body, and treatment options were limited. I later learned that I am also one of the 30% of people with psoriasis who has psoriatic arthritis. I eventually lost my hair, and my joint pain was unbearable. I finally started seeing a dermatologist who was determined to help me find a treatment to control my symptoms.

Between 2008 and 2019 I tried seven biologic medications. Some never worked for me, while others worked for a few years and eventually wore off, a common experience for many people with psoriasis. During this time, I developed joint damage in my spine and later both thumbs, which required surgery.

Eventually, through the darkness came a ray of light when I finally found a treatment that worked. My psoriasis has improved dramatically and now only covers a small portion of my body. My hair has grown back, and I’ve remained steady on the treatment for nearly two years.

Unfortunately, I worry that this treatment will soon be entirely out of my grasp, thanks to a health insurance practice called a copay accumulator adjustment program.

Under these programs, copay assistance is not counted toward a patient’s deductible or out-of-pocket maximum. Several states, including our neighbors in West Virginia, have banned the practice, as it basically requires that out-of-pocket costs get paid twice, first from the copay assistance and then from the patient’s own pocket. Unfortunately, it remains legal in Pennsylvania.

For people like me who rely on copay assistance to pay for medications, copay accumulator adjustment programs make it nearly impossible to afford the out-of-pocket costs.

My initial copay for my psoriasis treatment was $35 a month, a manageable sum for me and for most. But in 2019, that copay was increased to $250 a month, and then finally, in 2020, I received a letter from my insurance company stating that my copay would now be $1,250 a month. My disability payment, which I need due to my debilitating joint damage caused by psoriatic arthritis, is only $1,276 a month. With the new $1,250 copay, I would only have $26 for all my other medicines and monthly expenses.

Without copay assistance to help with that $1,250 bill, I’m not able to afford the treatment that keeps my psoriasis and psoriatic arthritis under control.

I have already had my basal thumb joints replaced, I’ve had carpal tunnel syndrome and psoriatic spondylitis in my spine, and I require nerve ablations every year and a half. Without treatment, psoriasis would cover 80% of my body, I would lose my hair, and my psoriatic arthritis would cause further joint damage. Where do I turn without an affordable treatment?

These changes are entirely out of my control, and I am not the only one. More and more, health insurance plans in Pennsylvania are implementing programs like these to exclude copay assistance from counting. This leaves people with chronic diseases with an impossible choice — come up with thousands of dollars they cannot afford or go without critical treatment.

Legislation has been introduced in Pennsylvania (Senate Bill 196 and its companion bill, House Bill 1664) that would require insurers or pharmacy benefit managers to count any payments made by or on behalf of the patient toward their deductible or out-of-pocket maximum. This bill would not only help me, but it would provide financial relief to so many who suffer from chronic conditions.

I want to sincerely thank Sen. Judy Ward and Rep. Barbara Gleim for introducing this legislation, and now it’s time for their colleagues to act and protect patients by ensuring all copays count.

Tami Seretti of Beaver County is co-chair of the National Psoriasis Foundation Eastern Advocacy Committee.