In this letter we summarize our experience prescribing #tafamidis at @OHSUSOM @OHSUCardio in @JAMACardio

Goal:summarize the out of pocket cost of tafamidis to patients and raise awareness about utilizing available resources
https://jamanetwork.com/journals/jamacardiology/article-abstract/2766889
#cardiotwitter @walidgellad

Tafamidis is an expensive medication and this has been published on with a cost-effectiveness analysis in @CircAHA ( https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.119.045093 ). The goal of our letter is to describe the cost to patients and spread awareness of the financial assistance programs out there

From May through Nov
50 consecutive patients (100% men - not by design just our wtATTR demographics, 76+-8 y)
86% got the drug successfully
7 didnt obtain tafamidis (3 couldn't afford it, 2 declined going through assistance paperwork,1 died, and 1 decided to enroll in an RCT)

All prescriptions required PA and 6% required an appeal.

The median time from writing prescription to mailing tafamidis was 26 (12, 78) days

1st month list price $23,485 pre insurance.

Prior to assistance and after insurance, mean cost was $3,082+-5,216 and median $1,909 ($250, $3,144).

30% got assistance from a foundation

26% assistance from Vyndalink

All patients who got assistance paid $0

Patients who did not get assistance but after applying insurance, paid out of pocket mean $1,683+-$858 and median $250 ($39, $1763)

We are fortunate to have a dedicated pharmacist on our team, Hongya Chen, who spends an average of 1 hour per patient helping them navigate this complex web

Here is a summary of the programs/foundations we use to help patients. This is dynamic and may change at any time

Since Nov, we had a 100% success rate of obtaining the medication to patients. Some initially don't qualify but through appeals and detailing their financial circumstances and fixed retirement income, they get approved

Why there has to be financial thresholds for assistance? Why aren't these "fixed"?

Hopefully this helps others navigate the complexities of these processes. The ATTR-ACT trial showed mortality benefit and reduction in HF hospitalizations. And in our experience patients stabilize on tafamidis and at times improve (anecdotes, noted).
https://www.nejm.org/doi/full/10.1056/NEJMoa1805689

Finally - we have disclosures as detailed above in the letter and personally I have investigator initiated grants with Pfizer.

And thanks to @HeitnerStephen as well as @walidgellad for their insights on pharmacoeconomics and drug policy