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View from the House: New cystic fibrosis drug needs approval

PUBLISHED: 08:00 01 April 2018

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I spoke in the House last week in a debate about cystic fibrosis and the availability of a new drug, Orkambi, to ameliorate the symptoms in sufferers.

I have met many cystic fibrosis sufferers and two in particular come to mind, Megan and Amelia.

Against a background of a constant, considerable daily struggle to live with the condition, their stoic determination and desire to prevail in life is immensely uplifting.

Equally humbling is the diligent care provided by their families, notably their respective mothers Gill and Lucie, one of whom came to the House for the debate.

There was a large amount of agreement amongst all members present and all of us spoke of cases in our constituencies.

As we live longer and more and more resources are committed to later life care, it is a sad fact that cystic fibrosis denies its sufferers the opportunity ever to reach an “old age”.

The significantly curtailed life expectancy it imposes means we should endeavour to help sufferers be able to make the most of a shortened lifespan, to allow them to fulfil their potential and achieve their aspirations.

Like any drug, there is a cost and NHS England has a duty to spend budgets judiciously.

However, sustained research from the manufacturer suggests that Orkambi not only provides a significant improvement in the patient’s quality of life but also it has a positive outcome from a cost-benefit analysis as it reduces the cost of related, ancillary treatments.

I hope that the debate highlighted the importance of this drug’s approval.


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