A picture of Kate holding up an End the Deadlock on Orkambi sign
A picture of Kate holding up an End the Deadlock on Orkambi sign

Kate has criticised the continued lack of access to the potentially life-saving medicine Orkambi, for people with cystic fibrosis

Wednesday, 15 August marks 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 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, Kate attended a debate about making Orkambi available on the NHS, after constituents contacted her about the issue.

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.

Kate 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.”

 

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