My Co-Pay Accumulator Story

Brian Callanan headshot.PNG

“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 Callahan is founder and CEO of the Cystic Fibrosis Lifestyle Foundation.

This post is part of IfPA’s “By All Account” 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.

Should Medicaid Patients be Required to Work?

Patients covered by Medicaid in Kentucky and Indiana could soon find themselves in a difficult position. According to new rules, recipients must complete 80 hours of “community engagement” or risk losing their health coverage.


For those with cystic fibrosis who struggle to breathe, it’s a no-win situation.

Medicaid provides health insurance for about 45 percent of cystic fibrosis patients. Without access to regular medication, their lung function may decrease even more quickly than the 1-3 percent rate at which it already decreases, on average, each year. Not surprisingly, cystic fibrosis comes with debilitating symptoms, such as chronic coughing.

Read more from Institute for Patient Access.


Cystic Fibrosis Community Celebrates New Treatment Option

The cystic fibrosis community received news worth celebrating this week.


The Food and Drug Administration approved a new drug that helps address the underlying cause of cystic fibrosis, not simply its symptoms.  The drug, a combination of tezacaftor/ivacaftor, is for patients aged 12 and older with certain cystic fibrosis mutations.

 Read more from Institute for Patient Access

The Price and Value of Orphan Drugs

How do you put a price tag on a drug that offers life-altering results – but for a small group of patients? The question is becoming increasingly relevant with the rise of innovative, targeted medicine. And it’s at the heart of current debate about how the Institute for Clinical and Economic Review’s value framework applies to orphan drugs.

ICER, as it’s called, is a drug price analysis group. Using its trademark value framework, it assigns drugs a value benchmark price based upon long-term cost effectiveness and short-term budget impact. Recent ICER reports have generated price points for drugs that treat rheumatoid arthritischronic pain and other conditions.

This summer ICER released a proposal on how it might alter its framework when evaluating drugs for “ultra-rare” conditions. ICER defines the term as a disease impacting fewer than 10,000 people. Small populations make generating comprehensive clinical trials data difficult, ICER concedes. That requires the organization to tweak how it approaches these therapies.

 Read More at the Institute for Patient Access

Boomer Esiason: In search of a breakthrough for my son's cystic fibrosis

Former Bengals quarterback Boomer Esiason is co-chairman of the Boomer Esiason Foundation.

Just over 24 years ago, my son Gunnar was diagnosed with cystic fibrosis, a debilitating and unrelenting disease for which there is no cure. At the time of his diagnosis, CF was akin to a death sentence – there were no FDA-approved treatments and we could only hope that we might see a cure in time to save Gunnar’s life.

Learn more at 

***PRESS RELEASE*** New Cystic Fibrosis White Paper Defines Barriers to Treatment

White paper addresses why patients cannot access breakthrough treatments that treat the cause, not just the symptoms, of cystic fibrosis


WASHINGTON – Today the Cystic Fibrosis Engagement Network, a project of the Alliance for Patient Access, released a new white paper, “Making Treatment Accessible for Cystic Fibrosis Patients.” The white paper details what’s standing in the way of patient access to new treatments approved to target some of the genetic mutations that cause Cystic Fibrosis – and how addressing bureaucratic barriers could help the 30,000 Americans living with this rare disease. For the patients with specific mutations, these treatments can significantly improve lung function and quality of life.  

The white paper pinpoints two key barriers to treatment: 

1.     Medicaid barriers. Due to the expense of managing the disease, many patients with cystic fibrosis – about 45 percent – depend upon Medicaid. Criteria and processes for determining prescription drug coverage can vary by state, where Drug Utilization Reviews and Pharmacy and Therapeutics committees often decide which patients get access to certain drugs. Officials do not necessarily communicate with actual patients or confer with experts, leading to decisions that can be “outdated and inconsistent with current practices.”    

2.     Prior authorization requirements. This technique requires patients and their families to appeal to the health plan for permission to access the medication their physician prescribed. Insurers may require paperwork, tests, or proof that a patient has failed on a less expensive therapy before they approve the requested drug.

The delay can be painful, even damaging for patients with the progressive disease. 

These barriers can block vital access to advanced and long-awaited treatments. For decades, patients were able only to treat the symptoms of the disease using mucus-thinning drugs and vests that vibrate the chest cavity to help clear mucus buildup from the lungs and vital organs. 

The paper urges policymakers, advocates, patients and health care providers to work toward commonsense solutions that improve access to cystic fibrosis medications.  



Cystic Fibrosis Engagement Network                                 

Alliance for Patient Access