After years of campaigning, children and young people in England with the life-shortening disease cystic fibrosis will soon get access to the new drug Orkambi.
Chris Matheson, Chester’s local Labour candidate has worked closely with Zoey Jones and her 12-month old daughter Eve from Chester who has cystic fibrosis, to raise awareness about this vital drug.
He said: “I am delighted that Eve and sufferers of cystic fibrosis across the country can finally be treated with Orkambi on the NHS.
“This announcement ends the wait for thousands living with the life-threatening condition.”
“Orkambi targets a mutation that around 50 per cent of people with cystic fibrosis in the UK have.
“This drug can make a real difference to the life expectancy and quality of life for thousands of people.
“The drug can slow decline in lung function which is the primary cause of death among people with cystic fibrosis.”
Back in May, as Member of Parliament for Chester, Chris handed in 65 yellow roses to 10 Downing Street, calling on former Prime Minister Theresa May to take urgent action over Orkambi.
It was the anniversary of her commitment to resolve a financial stalemate between the Government and drug companies which was preventing access to the drug.
At the start of this month Chris asked the Secretary of State for Health Matt Hancock whether patients with other forms of cystic fibrosis and long-term conditions would have to wait four years to access vital medication on the NHS.
Chris said: “Ten per cent of cystic fibrosis sufferers are still waiting for the approval of another critical cystic fibrosis therapy called Elexacaftor.
“We must not see the same four-year wait, as we did with Orkambi.”
“The assessment process for rare long-term conditions must be changed.
“The longer patients go without precision drugs, the longer they go on suffering irreversible damage.”
“For too long Orkambi negotiations were about the price of the drug instead of about Eve and the other children like her.”