Hello friends, as many of you know, I have Cystic Fibrosis and greatly benefit from the genetic protein modulator called Trikafta. 

It is imperative for those that benefit from Trikafta to not go without it, as a drastic and sudden regression to CF’s ruthless qualities are imminent. 

My insurance companies have always covered this medicine. Yes, they do request prior auths, but once those prior auth documents are completed and sent, my medicine is approved of.

Let me tell you what a prior auth process looks like.. doctors ask your insurance to pay for a medicine, your insurance companies say… wow! This medicine is pretty expensive- can I ask you a few questions about the patient’s health before we pay this much for the medicine? We want to make sure they don’t qualify for more affordable alternatives.

They send a sheet. The doctors office is supposed to answer each question in a way that thoroughly explains and advocates for your need of this drug, then they fax, email, or submit it on a portal. In urgent cases, clinics are encouraged to call the insurance company and speak to someone for a faster turn around time and for opportunity of additional explanation if needed.

There appears to be a disagreement amongst CF providers and the community, to whether running out of Trikafta is an emergency or warrants the time taken to do a peer to peer or verbal (called in prior auths request).

Let me tell you- it is urgent. You want your providers to call for you when you have maybe 2-3 days left of your trikafta without approval or certainty of coverage. Verbal authorizations don’t just serve the purpose of urgency, they offer clarity. 

Here’s what happened to me, recently. I let a clinic know I needed a prior auth about 2 months before I ran out. The clinic started the standard process with a form; it was submitted to the wrong pharmacy.. time taken up. Then it was resubmitted to the right pharmacy with missing information, claim denied.. It was submitted another time with the same question missing an answer- denied.. this went on for months… faxing and emailing like zombies-

All while I panicked and watched my supply of medication go to zero and stay at zero for a week.. I pleaded with the clinic to do a verbal auth when I had one day of medicine left and was told that I wouldn’t need to go to the ER for missing a dose or two. I was promised someone would do a verbal auth anyway and when the doctor called, they told me they didn’t give one because insurance said it wasn’t “required”. You can still do one when it is not required, by the way, and our clinics should insist on doing one in those situations to insure we don’t go without medicine. 

Having no Trikafta to help you is scary, now add the COViD pandemic without Trikafta, AND having a preschool age child who gets sick a lot from school… it’s unfair I had to go a week without my medicine and yes I did get sick during that time, unfortunately. My child and I both have pneumonia at the moment- we aren’t sure what it is as our COVID rapids were negative and we tested negative for common viruses.. we don’t know if we have a false negative for one of these tests or we just have something else. I had to battle this with my old CF BODY, needlessly. It’s depressing and a mockery, to spend years funding a cure you can’t obtain due to negligence. 

PS- I tried to get a non cf center doctor to approve it and order it and they weren’t able to, you have to be a CF specialist. 

All of that being said- I would like for CF Centers to be required to call and attempt a verbal auth for patients with they have 3 days left of Trikafta without approval or certainty of coverage. I would like the CF Foundation to make this a requirement for all centers that are accredited to care for Cf patients.