Ian Austin

Independent for Dudley North

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Austin calls for debate on drugs for rare diseases

Dudley MP speaks up for local people needing new drugs


Dudley MP Ian Austin is calling for a Parliamentary debate on removing obstacles to access treatment for rare conditions Muscular Dystrophy, Phenylketonuria (PKU) and Cystic Fibrosis.

Austin has been pushing for changes to the way that the NHS assesses new drugs that promise improved quality and length of life for people suffering from PKU and Cystic Fibrosis for many years after being contacted by residents in Dudley.

Under the current system new treatments are assessed based on short clinical trials, but organisations like the Cystic Fibrosis Trust are arguing that these short trials do not take account of the long-term benefits of new treatments.

Cystic fibrosis and PKU are both rare but have a debilitating effect on the everyday life of sufferers. New drugs such as Orkambi can change the life of Cystic Fibrosis sufferers, a life-shortening inherited disease which causes the lungs and digestive system to become clogged with mucus, making it hard to breathe and digest food. Orkambi is not available on the NHS, although campaigners have been calling for it to be accessible after trials show it could improve the life of Cystic Fibrosis sufferers.

Ian Austin said:

“This is exactly how politics should work. It’s my job to listen to my constituents and stand up in Parliament to push for changes to help them. When campaigners in Dudley contacted me about PKU and Cystic Fibrosis I promised to campaign for change.

“I’ve held meetings and debates in Parliament, tabled questions and written a cross-party letter to the Department of Health, urging the Government to make sure new drugs such as Orkambi are made available much more quickly. A Parliamentary debate is the next step to get the change people deserve.

“I want changes to the NHS rules on commissioning new treatments so they take account of the longer and more productive lives that these drugs offer who are suffering from rare diseases.”

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