By Tami Seretti
In 1996, I was diagnosed with psoriasis, a chronic immune-mediated disease that affects more than 3% of the American adult population. At the start of my journey, raised plaques and scales covered 85% of my body and treatment options were limited. I later learned that I was also one of the 30% of people with psoriasis who have psoriatic arthritis.
I ended up losing 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 biological drugs. Some never worked for me, while others worked for a few years and eventually faded. a common experience for many people with psoriasis. During this time I developed joint damage in my spine and later in 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 part of my body. My hair grew back and I was stable on treatment for almost two years. Unfortunately, I fear that this treatment will soon be entirely out of my reach, thanks to a health insurance practice called the Copay Accumulator Adjustment Program.
In the context of these programs, the co-payment is not taken into account in the deductible or the maximum disbursement of a patient. Several states, including our neighbors in West Virginia, have banned this practice because it essentially requires out-of-pocket expenses to be paid twice, first from co-pay assistance and then from own patient pocket.
Unfortunately, it’s still legal in Pennsylvania. For people like me who rely on copayment assistance to pay for medications, copayment accumulator adjustment programs make it nearly impossible to pay out-of-pocket expenses.
My initial co-pay for my psoriasis treatment was $35 a month – a manageable amount for me and most. But in 2019, that co-pay was increased to $250 per month, and then finally, in 2020, I got a letter from my insurance company that my co-pay would now be $1,250 per month.
My disability benefit, which I need because of my debilitating joint damage from psoriatic arthritis, is only $1,276 a month. With the new $1,250 co-pay, I would only have $26 for all my other medications and monthly expenses.
Without assistance to pay this $1,250 bill, I am unable to afford the treatment that controls my psoriasis and psoriatic arthritis. I’ve had my basal joints in my thumb replaced before, had carpal tunnel syndrome, psoriatic spondylitis in my spine and need 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 more joint damage. Where do I turn without an affordable treatment? These changes are entirely beyond my control, and I am not the only one. Increasingly, health insurance plans in Pennsylvania are implementing programs like these to exclude co-pay assistance from counting.
This leaves people with chronic conditions with an impossible choice – find thousands of dollars they can’t afford or go without critical treatment. Legislation has been introduced in Pennsylvania (SB-196 and its accompanying invoice, HB 1664) that would require insurers or pharmacy benefit managers to count all payments made by or on behalf of the patient against their maximum deductible or out-of-pocket.
Not only would this bill help me, but it would provide financial relief to so many people with chronic conditions. I want to sincerely thank Senator Ward and Representative Gleim for bringing this bill forward.
The Pennsylvania Legislature must act now to protect patients and pass SB 196/HB 1664 to make sure all copays matter.
Tami Seretti is co-chair of the National Psoriasis Foundation’s Eastern Advocacy Committee.