MARION TALKS OF FAMILY EXPERIENCE OF CYSTIC FIBROSIS IN PARLIAMENT
Marion Fellows, MP for Motherwell and Wishaw, spoke of her family’s experience in a Parliamentary debate on Cystic Fibrosis (CF) and the drug Orkambi last week and called on Scottish and UK Government Ministers to ensure drugs to treat CF are more readily available to sufferers.
The MP’s 16 month-old granddaughter, Saoirse, was born with CF and requires physiotherapy twice a day. Her parents were told after her birth not to comfort her during physiotherapy as she “needs to get used to it”.
Marion paid tribute to the families of those with CF saying they were “amazing people” and that it was proof of the solidarity they have with each other that over 100,000 signatures were given to secure the debate and the large number of MPs taking part.
Marion called on the UK Government to follow the steps taken by the Scottish Government who use individual patient treatment requests to assess peoples’ suitability for certain drugs and ensure they “access the right treatment at the right time”.
Commenting, Marion said:
“I am glad that I was able to offer my personal experiences on the illness and offer my support to all families locally and across the world who have also been affected. My granddaughter would not benefit from Orkambi, but we must all support each other.
“It is essential Governments ensure CF sufferers get the treatment they deserve. We are a wealthy and advanced country, people should not be going without.
“Thankfully, the Scottish Government does ensure that particular treatments can be made available on a case by case basis to those suffering.
“They are also encouraging patient representatives to participate in Scottish Medicine Consortiums that inform medical professionals of the difficulties undergone by people who cannot access these drugs.
“Everyone deserves to play a productive role in society and it is for that reason that we are and must continue to ensure that treatment is available now and to contribute to research in the long term.”