There must be a better way to help those living with cystic fibrosis
Marion with granddaughter Saoirse who lives with CF MP Marion in plea to transform health care
Commons that more than 100,000 signatures on a petition to secure the parliamentary debate – including 371 from her constituents in Wishaw and Motherwell – are proof of the solidarity shared by people with CF.
She is calling on the UK Government to follow the steps taken by the Scottish Government which uses individual patient treatment requests to assess people’s suitability for certain drugs at the right time.
Marion wants an end to what she calls a “postcode lottery for treatment”.
And she says there is an overarching need for a change in the way new drugs are approved for use.
Although Marion accepts that there is currently no cure for the condition, she says drugs like Orkambi, developed by Vertex Pharmaceuticals, can help people with CF lead better lives.
“Pharmaceutical companies are not there for charitable purposes but there must be a better way of pricing the cost of new drugs,” said Marion, who has written to the Prime Minister urging her to get the NHS and Vertex around the table.
“Cost-benefit analysis needs to be used to calculate the true costs. For example, we should look at reductions in hospital care costs and include the benefits to the economy from the use of these drugs.
“CF sufferers are people whose lives are shortened and deeply affected. It is difficult for me to think beyond my granddaughter and it is also difficult to listen to stories of what might happen.
“I know she is lucky but I also know and am passionately concerned about other children who are even more affected by CF than she is. As a politician I am very aware that everything comes down to money in the NHS. But as a grandmother, I am like everyone else – I love my granddaughters beyond reason and want everything for them.”
CF affects 3500 people in the UK and 70,000 worldwide.