MP Kate Green says that people living with cystic fibrosis ‘deserve better’ due to the fact that a lifesaving drug still isn’t available on the NHS.
Despite being licensed in the UK 1,000 days ago, the drug Orkambi is still not an option for NHS patients.
During this time more than 200 people who would have benefitted from the life-enhancing medicine have died.
Green – the MP for Stretford and Urmston – is now criticising this decision and the affect it could have on sufferers across Greater Manchester.
She said: “It is unacceptable that thousands of people across the UK continue to be denied a potentially life-saving drug.
“People with cystic fibrosis deserve better. That’s why I’ll continue to campaign for Orkambi to be made available on the NHS.”
Cystic fibrosis is a debilitating life-shortening condition caused by an inherited faulty gene.
This gene controls the movement of salt and water in and out of the body’s cells, clogging the lungs and digestive system with mucus, which makes breathing and digesting food difficult.
While conventional cystic fibrosis treatments target the symptoms, precision medicines like Orkambi tackle the underlying genetic defects that cause the disorder.
Orkambi has been found to slow the 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 November 20, 2015 and in June 2016 the National Institute for Health and Care Excellence recognised the drug as an important treatment.
Nearly half of the more than 10,000 people in the UK with cystic fibrosis – including children aged six or over – could benefit from taking it.
When asked about the issue during Prime Minister’s Questions, Theresa May hoped for a quick resolution to the negotiations to ensure access to the drug.
However, over the summer talks between NHS England and drugs manufacturer Vertex broke down, devastating thousands suffering from cystic fibrosis.