1,000 days since Cystic Fibrosis medicine Orkambi was licensed in the UK, Portsmouth MP Stephen Morgan has again called for the Cystic Fibrosis medicine Orkambi to be made available on the NHS.
During the 1000 days that have passed, 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.
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 per cent – 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 per cent.
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 today it is 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
However, over the summer talks between the drugs manufacturer Vertex and NHS England broke down, shattering the hopes of thousands of people.
Stephen Morgan MP said:
“It is so disappointing that although Orkambi has been made available in the UK, sufferers of Cystic Fibrosis still do not have access to it.
“The Prime Minister said she wanted to see a quick resolution to the negotiations to ensure people can access these drugs however we are no further along than we were 1000 days ago.
“I will continue to campaign for those suffering with this debilitating condition in Portsmouth and across the UK.”
