Clwyd West MS Darren Millar has raised with the First Minister the real fear that game changing Cystic Fibrosis (CF) therapies may not be available in the future and called for assurances that the individual patient funding request route to accessing these medications will still be available for patients in Wales.
On November 3rd, NICE published an update on their evaluation of CFTR modulator treatments, Orkambi, Symkevi and Kaftrio, stating that while they are clinically effective treatments, with important benefits for people with CF, they are too expensive at the list price for them to be able to recommend them for use on the NHS.
Calling for a Statement from Mark Drakeford on the future availability of Modulator Therapies for CF patients in Wales in yesterday’s meeting of the Welsh Parliament, Darren outlined the life-enhancing benefits of the therapies and called for their continued availability.
He said:
“There have been huge leaps forward in cystic fibrosis treatments in recent decades. We’ve seen life expectancy leap from being in the thirties to being in the fifties and now, thanks to the modulator therapies that are currently available to patients, many cystic fibrosis patients can expect a near-normal life expectancy.
“There is draft guidance from NICE in relation to a number of modulator therapies and there is a prospect potentially of them not being available in the future because of the significant cost of these particular medications.
“I appreciate the importance of balancing the public purse against the benefits that people might derive, but these are game-changing therapies that are available to hundreds of patients in Wales and may not be in the future.
“If NICE do make a decision not to recommend these treatments, what consideration has the Welsh Government given to continuing to have a commercial arrangement with the manufacturer of some of these modulator therapies? Can the First Minister confirm that the individual patient funding request route to accessing these medications may still be available?”
In his response, the First Minister said his hope is that the therapies will continue to be available.
He said:
“My hope is that, as a result of the consultation and the discussions that go on, we will reach a position where these drugs, life-saving in the way that the Member described, will continue to be available here in Wales.”
