My Co-Pay Accumulator Story

“Important Prescription Plan Change,” the letter announced.  “We’re writing to inform you of an important upcoming change to your specialty prescription benefits.”

My stomach turned.  My heart sank. It was the letter I had hoped I wouldn’t receive.

My health insurer was changing its rules about co-pay cards—discount cards used by people who need high-cost drugs to manage complex diseases.  That can include people who, like me, live with cystic fibrosis.

A contact at the Cystic Fibrosis Engagement Network had forewarned me about insurers’ new “co-pay accumulator adjustment programs.” The pharmacy still accepts your co-pay card so you can get your medicine.  But the insurer doesn’t count those payments toward your annual deductible. Once you’ve used up the co-pay card, you’re on the hook for your entire deductible balance.

Some patients get blindsided.  They don’t even know their insurer has changed its policy.  Then they face a huge out-of-pocket tab just to get the medicine they need.  Some simply can’t afford it. Looking at the letter from my health insurer, I wondered if I would be one of those patients who leaves the pharmacy emptyhanded, panicked about how I would survive cystic fibrosis without medicine.  

I was frantically working out the math in my head.  This particular medication cost $6,600 per month. I was responsible for half.  Come spring, after I had used up my co-pay assistance, I would have a $3,300 bill each month until I met my deductible.  There would also be co-pays for doctor visits, and other medical expenses.

How much did I have in my checking account?  In savings? Would I need to ask family or friends to loan me money?

I was terrified.  But then again, fear and anxiety are facts of life when you live with cystic fibrosis.

Just consider, when I was born and diagnosed with cystic fibrosis in 1976, my parents were told I probably wouldn’t live past age 10.  I’m sure they were scared. But they committed to giving me as normal a childhood as possible. That included sports; skiing was my favorite.  Here I found the physical, psychological and social benefits that helped me stay positive about living with my disease.

I decided to dedicate my adult life to giving this experience to other people with cystic fibrosis.  Some families, I knew, were cash-strapped from the financial toll of treating the disease. So I founded an organization, the Cystic Fibrosis Lifestyle Foundation, that provides grants for the swimming lessons, summer camp, horseback-riding lessons and ski passes that families can’t always afford for their kids.  Last year we awarded over 1,200 grants worth more than $550,000. The demand is unbelievable.

My point is just this: I am a person who’s committed to staying hopeful, and to finding solutions.

So, when I got the letter about my health plan, I called my insurer.  Help me understand how this new program impacts me, I told them.  I can’t stop taking my medicine.

Their answer was an enormous relief.  Their program, they explained, applied to co-pay cards only.  The aid I have comes directly from a needs-based assistance program run by the medicine’s manufacturer.

In other words, I was exempt. I could continue using the assistance, and it would continue paying down my annual deductible, the insurance rep explained.  I could still get my medicine.

My story has a happy ending, and I’m grateful for that.  But I remain concerned about other patients who are not so lucky.  Patients whose health plans do not exclude needs-based assistance from their co-pay accumulator adjustment programs.  Or patients who do depend upon co-pay cards.

I also know that nothing is forever.  The rules of insurance coverage are always changing, and it’s entirely possible that 2020 could bring changes to the accumulator program that do affect me.

That’s why I urge people with cystic fibrosis, their families and, honestly, all patients, to educate themselves and others about these programs.  Talk with your insurers. Let them know how these affect your ability to access vital medicine.

But don’t stop there.  Talk with state officials, insurance commissioners, members of Congress.  

Don’t stop, until we can stop co-pay accumulator adjustment programs.  I know we can.

Brian Callanan is founder and CEO of the Cystic Fibrosis Lifestyle Foundation.

This post is part of IfPA’s “By All Accounts” blog series.  Each month, a different guest author – and a different story – adds a new piece to the common narrative of how insurance practices meant to control costs are instead hurting patients.

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