Gerald Jones MP

Putting Merthyr Tydfil and Rhymney at the Heart of Parliament

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Orkambi Debate - 19th March 2018

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During yesterday's Westminster Hall debate on access to cystic fibrosis medicine, Orkambi, I said:

It is a pleasure to serve under your chairmanship, Sir Roger, as we debate a petition to support patient access to Orkambi. I congratulate the hon. Member for Sutton and Cheam (Paul Scully) on making a powerful case. I also congratulate members of the Cystic Fibrosis Trust on all the work they have done to bring about this debate.

Cystic fibrosis is a hugely debilitating illness that has a massive impact on individuals’ quality of life. Research shows that Orkambi can slow down the decline in lung function, which is the main cause of death for people with cystic fibrosis. About 3,300 people in the UK could benefit from the use of that medication, including 118 people in Wales. Those research figures are from 2014, and I know they have been updated somewhat.

We have heard that many of our European neighbours, including Ireland, support the use of this medication, as do other countries across the world, such as the USA. I represent Merthyr Tydfil and Rhymney—a Welsh constituency. I am speaking for 170 of my constituents, including Mr and Mrs Bow, whose seven-year-old daughter, Sofia, lives with cystic fibrosis. At that tender age, she already takes 30-plus tablets a day. Over and above the personal impact on Sofia, that medication constitutes a cost.

CF is a debilitating condition that restricts individuals’ employment opportunities and their capacity to contribute to society. My hon. Friend the Member for Dudley North (Ian Austin), who has done so much to highlight the need for action, mentioned earlier in the debate that it is important for us to look at the bigger picture and the bigger cost, rather than only at the cost of the medication itself—at savings to the NHS in hospital admissions, treatment and medication, or reduction in tax revenue from restricting the opportunities for people with cystic fibrosis to contribute to society. The wider cost needs to be considered against the cost of not licensing this medication.

As a Welsh MP, I fully appreciate that a decision on the medication in Wales will depend on the view of the Welsh NHS and the All Wales Medicines Strategy Group. However, the outcome of today’s debate and any agreement between NHS England and Vertex will undoubtedly have an impact by setting the tone in the other regions and countries of the United Kingdom. In Wales, the strategy group has encouraged Vertex strongly to make a submission for appraisal. Apparently Vertex has agreed, but it has not yet agreed a date, which we hope will be soon.

As we have heard, the latest discussion between NHS England and Vertex, released on Friday, did not seem go well, which has left cystic fibrosis sufferers throughout the UK and their families hugely despondent. Progress and answers are needed to offer comfort and support to families. It is time for the Secretary of State, or indeed the Minister, to take hold of the situation and commit to making progress. This has gone on for far too long and time is of the essence. I hope the Minister achieves progress in this long-standing situation—it has been a good three years. It seems to have stagnated, and we need more urgency.

I agree with the hon. Member for Cheltenham (Alex Chalk) on the need for pricing to be realistic, but we are talking about life-saving, life-changing drugs, and the cost of research needs to be covered. We also need to ensure that the companies are not looking to profit unduly from their medication, because far too much is at stake. I hope progress can be made and that the Minister will commit to ensuring action sooner rather than later.

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