MP pleads with Government to fund rare disease medicine in emotional debate

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Bury North MP James Frith has used an emotional debate in Parliament to call on the Government to intervene in a dispute about the provision of a potentially life-changing drug to patients with Cystic Fibrosis.

The drug Orkambi has the potential to significantly improve the lives of nearly half of the UK’s 10,000 cystic fibrosis sufferers. It tackles the underlying genetic mutations which cause the condition, slowing the decline in lung function by over 40% and reducing the need for hospitalisation by over 60%.

Despite this, NICE and NHS England have so far refused to make it available as a treatment on the NHS, citing cost concerns.

Speaking in the debate with Bury resident Graham Little in the audience, whose wife Clare has cystic fibrosis and brought the matter to James’s attention last year, James said:

“The transformative, life-prolonging impact of the drug is tantamount to life-saving. Used early enough, it can ensure that people fulfil their potential. It can prolong life and lung capacity, enabling those with the disease to contribute to the economy and wider society, as well as providing extra decades with family and loved ones.”

James called on the drug provider, Vertex, to come to the table with a realistic price offer and for NHS England and NICE to take account of the impact this drug will have on the quality of life of people like Clare who are living with cystic fibrosis. He also called for a new decision-making body for medicines to treat rare diseases like cystic fibrosis which often appear to be overlooked.

At least 70 MPs, from all parties, attended the debate following a petition on access to Orkambi signed by over 115,000 people, including several hundred from Bury.

Following up the debate, James put a question on Orkambi to the Health Minister in Parliament.

Watch James's speech

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