Bury North MP James Frith has written to the Secretary of State for Health to call for a greater focus on the potential impact on patients in decisions on which medicines to fund on the NHS.
The latest intervention by James Frith follows months of meetings and representations to Ministers in support of a campaign by the Cystic Fibrosis Trust to get access to new medicines that could prolong and enhance the lives of patients suffering from cystic fibrosis in Bury.
James met the husband of a Bury woman suffering from cystic fibrosis at his first advice surgery as the town’s new MP back in July and has championed the cause ever since, attending a meeting in Parliament recently with other MPs hosted by the Cystic Fibrosis Trust to discuss putting further pressure on the Government.
Over 10,000 people in the UK suffer from cystic fibrosis - more than 400 here in Greater Manchester. A new drug called Orkambi has the potential to significantly improve the lives of nearly half of those living with the disease. It tackles the underlying genetic mutations which cause the condition, slowing the decline in lung function by over 40% and reducing the need for hospitalisation by over 60%.
Despite this, NICE, who determine which medicines will be made available to UK NHS patients, have refused to permit use of the drug, arguing that it is too expensive.
James Frith MP said:
"Having heard directly from a local family living with this horrible disease, I believe firmly that the Government have made the wrong decision and need to consider factors other than simply cost when determining which medicines to make available to NHS patients.
"It is unacceptable that hundreds of people across Greater Manchester and thousands of people across the UK continue to be denied a potentially life-saving drug. I have written to the Secretary of State to ask him to intervene and change the way medicines are assessed and I am also tabling a number of questions in Parliament.
"Drugs like Orkambi can make an enormous difference to thousands of people’s lives and the Government must do everything possible to make it available - and other potentially life-saving medicines being ruled out on cost grounds. We need some empathy and compassion in decision making."
Cystic fibrosis is a life-shortening, inherited disorder leading to severely reduced quality of life and life expectancy. Half of all people who died with CF last year were under the age of 31.
People living with this devastating condition experience a build-up of thick, sticky mucus that causes chronic lung infections and progressive lung damage. Daily life can be a struggle and people with the condition face a huge burden of daily treatments, with the most basic tasks causing such breathlessness that oxygen is required to help them breathe.