Addressing the Root Cause: Live on Talk TV
Written by Marc Cotterill
Introduction
On Saturday the 11th of November 2023, I received a call offering the opportunity to discuss the issue of CFTR (Cystic Fibrosis Transmembrane Conductance Regulator) modulator therapies and their accessibility on Talk TV, interviewed by Dr David Bull. A medical doctor by training and a prominent television presenter, Dr Bull has a history of demonstrating his commitment to CF following the loss of a close friend to the condition. He's been a driving force in various campaigns, notably advocating for newborn screening in CF, and it was refreshing to hear how knowledgeable, but also how supportive he is towards the issue of access to CFTR modulator therapies worldwide.
I was asked to join live for Dr David’s ‘Sunday Surgery’ segment at 9 am on Freeview channel 237. It was my first live TV appearance, so, as you can imagine I was a little nervous—particularly in light of my disappointment with recent media coverage following the announcement from NICE and its draft recommendation not to fund CFTR modulators for new users in the UK.
[To learn more about the NICE funding issue, visit my article here.]
I felt a whole side of the story was being missed, and this felt like a great opportunity to draw attention to it. The problem is, when you’re asked to take part in media gigs like this, you are often at the mercy of its producers who have a clear view of the story THEY want to tell, regardless of the story YOU want to tell. But this is live TV, and if there’s one great thing about it, it’s that they can’t edit you out.
So, intent on addressing the root cause of the matter, I got out of bed nice and early, got through my morning CF treatments, made a fresh cup of coffee and joined the show via Zoom.
What to expect
During our live discussion on Talk TV, we delved into a range of topics surrounding CF and access to modulator therapies. We covered the following:
The complexities of CF and its impact on daily life.
My personal transformation story with CFTR modulators.
The cause-and-effect relationship between Vertex pricing and NICE.
The patent strategies of Vertex and the consequences for global drug accessibility.
Stories of families crowdfunding for life-saving generics from Argentina.
The methods families then use to stretch their supply.
And why Vertex's R&D costs are a poor excuse for pricing.
Finally, as the segment drew to a close, I faced a profound question posed by Dr David Bull: “What price do you put on a human life?”.
I felt quite emotional as I hit the red button to end the Zoom call. Our conversation did more than just share information; it highlighted parts of the story that in many cases have been overlooked by mainstream media.
I gave a sigh of relief, made another brew, and posted the conversation to my Instagram channel. You can check out the video below.
As always, thank you for your support.
Marc x
