Thread by @MasriAhmadMD, In this letter we summarize our experience prescribing #tafamidis at @OHSUSOM @OHSUCardio [...]

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
https://jamanetwork.com/journals/... href="https://twtext.com//hashtag/cardiotwitter"> #cardiotwitter @walidgellad

#cardiotwitter @walidgellad" title="In this letter we summarize our experience prescribing #tafamidis at @OHSUSOM @OHSUCardio in @JAMACardioGoal:summarize the out of pocket cost of tafamidis to patients and raise awareness about utilizing available resources https://jamanetwork.com/journals/... href="https://twtext.com//hashtag/cardiotwitter"> #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">https://www.ahajournals.org/doi/10.11... ). 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& #39;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& #39;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& #39;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">https://www.nejm.org/doi/full/...

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

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