Last reply 2 months ago
Choosing a DMT – Roles of Dr + Patient

Hi all. It has been a while in the writing. I was moved to write a quite long (4 part) article about the experiences of newly diagnosed people in choosing a DMT.

Many of the remarks made here really made me start thinking and reading around it. My view is that although it should be a shared process, far too often the patients feel as if they bear the burden of responsibility and they don’t receive the leadership they’d like.

It has been published in the Barts Research Blog. 2 part a week for the next four weeks.

https://multiple-sclerosis-research.org/2019/04/guest-post-a-patients-point-of-view-choosing-a-dmt/

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grandma
2 months ago

Hi @dominics read the ‘story so far’ but I’m interested to know, as I was on the original trial for beta- Inferon 25 years ago when, I believe, it was the first and only DMT available, trial was 3 years, extended to 4 , and when it was over, much jubilation when NICE said yes, queue outside hospitals demanding treatment which the hospitals couldn’t afford and one had to join the waiting list. Drug company kindly said they would supply it free of charge to all those who had taken part as a ‘thank you’ but change was not mentioned until 18 mths ago when I was changed to Tecfidera. Wondering if the lack of change was in any way due to the fact that it wasn’t costing the NHS a thing. I must stop being a cynic🥊😜


dominics
2 months ago

There was a shared cost model, not free if not on trial. That is called Post Marketing Surveillance, Phase 4.


stumbler
2 months ago

@dominics , nice piece of work. Do provide a link when part 2 (and 3 and 4) are available?


dominics
2 months ago

@stumbler – there are 4 parts, going up on 4 consecutive weeks.

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