Cystic Fibrosis Patients’ Annual Fight for Access to Treatment

Most patients with cystic fibrosis are just wrapping up an annual hassle of the new year – that of confirming their insurance will still cover the medications they need. It’s a process known as insurance reauthorization.

The Daily Ritual

Reauthorization is inane because cystic fibrosis is a lifelong disease that requires constant treatment. Cystic fibrosis patients’ daily medical regimen and breathing treatments can take up to three hours. Yet patients and their caregivers have made time for it every day since early childhood.

Most people with cystic fibrosis are diagnosed before age two, setting them up for a lifetime of medications. Some medications, like bronchodilators, allow for increased air flow to improve breathing, while others, like mucus thinners, help break up the mucus in their lungs.

“Reauthorizations are a super frustrating and stressful process,” explains Emily Schaller, a patient with cystic fibrosis and founder of the Rock CF Foundation. “I have to engage my care team and the specialty pharmacy just to prove to the insurance company that I still have cystic fibrosis. It’s time consuming and I always worry my necessary medications won’t be covered.”

Adding Years to Life

While insurers are stuck imposing the same redundant paperwork requirements year after year, research is moving ahead at lightning speed. 

Breakthrough therapies and medical advances have prolonged life expectancy for people with cystic fibrosis. The predicted survival age is now 50. But reaching that milestone requires that patients have steady access to necessary medications.

Shorting doses or skipping treatments can have dire consequences for the 30,000 people living with the condition. For them, a day without medication can lead to infections, hospitalization, even premature death.

Despite the risks of missing treatments, patients or their parents and their doctors must spend countless hours working through reauthorization processes for every prescription every year.

Reforming Reauthorization Requirements

The need to reform reauthorization requirements has never been more apparent. The health care delivery system continues to feel strained from the pandemic, yet cost-cutting policies are making it harder than ever for chronic patients to stay well.

The hardships caused by prior authorization and reauthorization are being discussed at the federal level, though no changes have been committed to yet. State-based Rare Disease Advisory Councils are also urging policy change closer to home.

At both levels of government, policymakers would be wise to address these barriers to care. Anyone who has been through the reauthorization process knows it’s ripe for patient-centered reform.


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