James speaking up for Cystic Fibrosis patients in Parliament
James speaking up for Cystic Fibrosis patients in Parliament

James Frith called for renewed efforts and intervention by ministers to reach a deal on Orkambi access for cystic fibrosis patients as 1,000 days passed since the drug was licensed for use.

Wednesday, 15th August marked 1,000 days since the cystic fibrosis medicine Orkambi was licensed in the UK – but it is still unavailable on the NHS.

During that time, more than 200 people who may have benefited from this life enhancing and potentially life prolonging drug have sadly died.

Cystic fibrosis is a terrible and debilitating life-shortening illness that leads to a severely reduced quality of life.

It causes a build-up of thick, sticky mucus, chronic lung infections and progressive lung damage.

Daily life itself can be a struggle and people with the condition face a huge burden of daily treatments.

Orkambi is a precision medicine that nearly half of the more than 10,000 people in the UK with cystic fibrosis, including children aged six or over, could benefit from.

While conventional cystic fibrosis treatments target the symptoms, precision medicines such as Orkambi tackle the underlying genetic defects that cause the condition.

Orkambi has been found to slow decline in lung function by up to 42% – the most common cause of death for people with cystic fibrosis.

It has also been shown to reduce chest infections requiring hospital treatment by up to 61%.

Orkambi received its European license on 20 November 2015 and in June the following year the UK government agency the National Institute for Health and Care Excellence (NICE) recognised Orkambi as an important treatment.

Yet despite this it is unavailable to most people with cystic fibrosis across the UK. And 15th August marked 1,000 days since it was licensed for use in Europe and therefore the UK.

Earlier this year, MPs debated making Orkambi available while hundreds of children wrote personal, heartfelt letters to the Prime Minister pleading for it to be made available. Bury North MP James Frith spoke in that debate on behalf of those living with cystic fibrosis in Bury.

When asked about the issue during Prime Minister’s Questions, Theresa May said she wanted to see a quick resolution to the negotiations to ensure people can access the drugs.

However, over the summer talks between the drugs manufacturer Vertex and NHS England broke down, shattering the hopes of thousands of people.

James said:

“With each passing day the government defers, NHS England delays and Vertex denies Orkambi, cystic fibrosis patients are drowning in their disease. It has now been 1,008 days since Orkambi was licensed for use here in the UK and 439 days since I was elected and began campaigning in Parliament to secure access to it for those living with cystic fibrosis in Bury. Ministers now need to intervene to force a deal between NHS England and drug company Vertex. Patients don’t have more days to waste. We need Orkambi now.”

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