Drugs: Ultra-rare Diseases Debate
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Andrea Jenkyns
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Drugs: Ultra-rare Diseases
Andrea Jenkyns Excerpts(9 years, 5 months ago)
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Andrea Jenkyns (Morley and Outwood) (Con)
I thank and commend the hon. Member for Leeds North West (Greg Mulholland) for his work.
I find it heartbreaking that we have today heard about many constituents who have had access to drugs that have given them hope and improved their lives but which have then been taken away. Like the hon. Member for Leeds North West, I have a constituent who suffers from Morquio, Angela Paton. She is 35 years old; it has taken 35 years to find a drug that works, and it is now being taken away from her. Matthew Firth is another constituent, a young man with special needs who can no longer get a basic cream that he needs.
The case of Abi Longfellow is much in the news at the moment. She is a 12-year-old girl with a rare form of dense deposit disease. She needs a kidney transplant to live. Her father has been prepared in the past 12 months to give her his kidney. He should have had the operation on Friday, but for that to go ahead she needs the drug eculizumab. NHS England and NICE say that the drug will not work in Abi’s case—she has a very rare form of DDD—but there is research from the US, Canada and Italy indicating that the drug does work.
I thank the Prime Minister for intervening and asking NHS England to examine the case, and I ask my hon. Friend the Minister to ensure that that happens. There is research available; I find it difficult to understand whether, when the likes of NHS England and NICE say the drug will not work, that is just a tick-box exercise, or whether they look at research from outside this country. It is important to consider that. I would like a joined-up approach between NICE, NHS England and the Department of Health. I ask the Minister to consider the matter comprehensively, and to ensure that NHS England and NICE look into it.
Mr David Crausby (in the Chair)
I will now call the Front-Bench Members; there may be a vote, in which case I shall suspend the sitting for 15 minutes. The new rules allow Mr Mulholland to wind up the debate briefly, if there is time, but for that to happen, the Minister must be allowed enough time.