Hello everyone,

 

As many of you know, I have Cystic Fibrosis and rely on a genetic protein modulator called Trikafta, which is critical for managing the disease. For those who benefit from Trikafta, missing doses can lead to a rapid and severe decline, as the symptoms of CF can quickly return.

 

My insurance has consistently covered Trikafta, though they require prior authorization (PA). Once my doctor’s office submits the PA documents, the medication is typically approved.

 

The PA process usually works like this: the doctor’s office requests that insurance covers a specific medication. The insurance company, seeing that it’s costly, asks a few questions to confirm it’s necessary and that there are no cheaper alternatives. The doctor’s office then answers each question, thoroughly advocating for the need for the medication. In urgent cases, clinics can speed up this process with a verbal PA request, where they call the insurance company to explain the situation in real time.

 

Unfortunately, there seems to be a debate among CF providers and in the community about whether running out of Trikafta qualifies as an emergency and whether it warrants the extra time to make a verbal authorization request.

 

Let me tell you—it is urgent. When you’re down to just a couple of days’ supply and still waiting on approval, you want your providers to call and advocate on your behalf. Verbal PAs don’t just speed things up; they provide much-needed clarity.

 

Recently, I experienced the consequences of delays firsthand. I informed my clinic two months before my supply ran out, but missteps slowed down the process. The form was initially submitted to the wrong pharmacy, then resubmitted with missing information, resulting in a denial. This happened multiple times, and as I watched my supply dwindle to zero, I begged the clinic to do a verbal PA. I was assured it wasn’t necessary and promised someone would handle it. When my doctor finally called, they opted not to pursue a verbal PA because insurance said it wasn’t “required”—despite the fact it could still be done to ensure I wouldn’t go without the medication.

 

Going without Trikafta was frightening. Add to that the ongoing COVID-19 pandemic, plus a young child who often brings home illnesses from preschool, and it was a stressful experience. I ended up going a week without Trikafta and, unfortunately, fell ill. My child and I both developed pneumonia. Despite negative tests for COVID-19 and other common viruses, we were left battling something. I had to go through it with my body in its old CF state, a situation that could have been avoided with more proactive advocacy.

 

To address situations like this, I believe CF centers should be required to initiate a verbal PA when a patient has three days of Trikafta left without approval or certainty of coverage. I urge the CF Foundation to make this a mandatory policy for all accredited centers caring for CF patients.

 

Thank you for reading and for supporting CF patients’ right to access the treatments we need.