Additional information
Good morning! I thought it to be helpful to provide you with details regarding this petition, as someone appointed by the CF Foundation is re-reviewing this request.
In November of 2020, I tried to be proactive with my trikafta preserving by reaching out to Vertex Pharmaceuticals patient support line. I called to request that they advocate for this clinic to write me 3 months worth of Trikafta on my scripts; other patients were getting this and my insurance company said they would pay. My only barrier was the clinic just wouldn’t write them and would not explain why. The “patient advocate” at vertex said she would ask, but didn’t get back to me for months; I called and left messages, I emailed her, I heard nothing. .. oddly by some large error- the pharmacy shipped me a 3 month supply in the fall. They just had to lie to my insurance and tell them they filled one month supplies for each of those months.
Feb 2nd of this year- i proactively called my insurance company and we went down the list of medications that will require a prior auth. We faxed the clinic the forms- they were received by Feb 3rd and I followed up with the clinic to make sure they had them.
The clinic sent this form back March 12. Insurance denied it and informed them March 13. The clinic left proof that I carry a faulty copy of CFTR off of the prior auth.
The clinic sent it again March 21st but still with a missing piece of evidence.
On March 22nd, the claim was denied. Later this day on the 22nd, the clinic called the insurance company to do a peer to peer review; the verbal auth was no longer available as the claim was denied twice and required a doctor to speak to a doctor to only be told that they submitted the forms repeatedly with a missing answer or supported document to a question.
When I had 5 days left of it, Walgreens called the clinic for me to let them know the fill was urgently needed.
When I had 1 day left of it, it was a Sunday, and I called the on call doctor to request an urgent fill. They told me that they would call on Monday but they were annoyed and said that missing doses would not place me in the emergency room… I knew they wouldn’t follow through for me. They called and turned down the opportunity to provide a verbal on that Monday because the insurance told them it was not required.
Compass advocate was calling them too to try to help the insurance company and the clinic communicate and to advocate for me to stop missing doses; it did not help.
In fact, the social worker called me to “convey frustration on behalf of the nursing and doctors staff” from the calls they were getting- referencing one call I made when I had one pill left, and an email I sent when I had zero pills left. I assured them that any calls the clinic are getting are coming from the CF Foundation rep, my insurance company, the pharmacy, and 1 phone call from my husband who was very concerned about their processes or lack there of, and my health.
The social worker also told me that a few days after the doctor called on Monday, they and another doctor called to do a verbal auth but, again, because it was not “required” they declined- they only wanted to do one if it was for a peer to peer.
My medication was not delivered to me until the 26th; so for 9 days I had no medication.
Also, I called the vertex patient support group to follow up in March and the person told me they didn’t call me because the clinic never returns their calls so they had nothing to report to me..
im not saying the people of the clinic are bad. I’m saying that this can’t happen and the only person that pays is me- with my health- does it matter? Does it matter to anyone other than me, my child and my family?.. I shouldn’t have to write these things, find solutions for healthcare, fear for my well-being because of poor communication in paperwork.
And the craziest thing is I’m offering a solution. I am fixing a problem and proposing a protocol to help everyone; but it is 1. Not quickly accepted and 2. They aren’t offering any other solutions or open conversation. You know what the compass rep said? “Well.. they clinic will find out they’re doing something wrong when all their patients start leaving…” is that how long it takes? I have to wait for a bunch of patients to leave?
the CFF and the clinics should be more compassionate to patients- they should be mad this happened- they should be brainstorming ways to prevent such things and talking with me about plans to move forward and fix it. I assure you that this is not happening and this is why the petition exists, patient safety and accountability.