Chronically ill patients facing a lack of insurance coverage — by law

Managing autoimmune arthritis that causes painful, swollen joints and daily fatigue is almost like having a full-time job. The medication I need to prevent further joint damage also suppresses my immune system, which means running through PTO (paid time off)  for sick days instead of fun days. Regardless, biologic medications allow me to function and keep my hands from swelling like balloons. Living with chronic illness is taxing enough without having to decode insurance hurdles to receive these life-altering medications.

I incorrectly thought that moving from New Jersey to California would alleviate some of my struggles, but this year I ran face-first into one of those insurance hurdles.

How could patients receive any benefit from a copay assistance program when insurance companies usurp the funds?

Chronic illness requires both specialized medication and specialized doctors, which requires a high-tier PPO insurance plan to provide access to the necessary specialists. Inevitably, the only option for these parameters is a High Deductible PPO. Starting a high-deductible plan in 2018 was a stressful change, but I knew about manufacturer assistance programs and quickly realized my copay assistance would offset the initial expense of a high-deductible. I had heard of copay accumulator adjustment programs, which meant insurance would take the assistance money from the drug company but not count it towards your cost limits.

Charmed by California’s progressive landscape and blinded by my personal success, I assumed California already had laws to protect us from this scam-like policy.

This illusion shattered in September when I received a surprise bill close to $1,000 for a specialist visit. I could not understand how this happened; each plan year, I meticulously coordinate prescriptions and prior authorizations to ensure a medication fill immediately, utilizing my assistance from the drug company and fulfilling my deductible prior to any other health expense. Doing this means all subsequent charges are subject to coinsurance instead of full-negotiated rates. I spent hours calling customer service being sent in circles until an agent finally shared the Evidence of Coverage document. Sure enough, there was a copay accumulator adjustment clause (not provided during enrollment).

I filed a grievance with my insurance company including the following questions: How could patients receive any benefit from a copay assistance program when insurance companies usurp the funds? Why would it matter if a drug company paid, if I paid with HSA money from my employer, or if my aunt Sally paid as a gift to me? In any case, insurance receives payment.

Patients, caregivers, friends, and families of those struggling with their medication fills: you can make a difference.

Through the copay accumulator adjustment program, insurance gets paid from copay assistance programs, gets their contracted rate per medication fill, and keeps getting paid upwards of five times what they should receive because my deductible never tracks. Consequently, each fill is a full retail price, and drug manufacturer assistance runs out well before the end of the year. I am left scrambling to pay for these unplanned bills, stressing about my medication costs (causing my disease to flare), and wondering if I can stay on the medication that keeps my joints from deteriorating into a painful, swollen mess. I don’t have many options to prevent joint damage and any medication in the appropriate class carries this identical burden.

If you wonder, “How can this be legal?” you are not alone. Shockingly, as written, the federal guidelines provide an ambivalent gray area allowing lawmakers to deny responsibility for this burden. In response, as many as 15 states have enacted legislation to combat the predatory behavior insurance companies directed at chronically ill patients. California is not one of these states. We must enact legislation that requires insurers to count third-party payments, including copay assistance, towards patient cost-sharing limits. Patients, caregivers, friends, and families of those struggling with their medication fills: you can make a difference. Visit All Copays Count Coalition (allcopayscount.org) to share your own story and learn how to advocate in your area.
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Editor’s Note: Alyssa R. Dykstra, 30, lives in Orange County. She was diagnosed with auto-immune arthritis at the age of 2.