Tag Archives: rare diseases

Greg Mulholland’s row with the Speaker – the obvious solution

Yesterday, Leeds MP Greg Mulholland tried to ask a question about the availability of a drug to treat a constituent’s rare disease – and was prevented from doing so by the Speaker for being “long-winded.”  ITV News has the story:

Speaker John Bercow had warned Mr Mulholland to be quick in his statement but after referring to missed decision dates given to families by health authorities, the Lib Dem was told to resume his seat.

Six-year-old Sam Brown from Otley. Sam, who has Morquio syndrome needs Vimazim treatment, mentioned by Mr Mulholland, but NHS England deferred a decision over whether to provide the drug, then last week announced it would wait for guidance from NICE, the health body consulting on the drug.

There is a video of the exchange on the ITV site and, to be honest, I’m quite annoyed with John Bercow. Greg was no more long-winded than many of the other questions that day – Hansard has the details so you can see for yourself. All Greg had said before he was interrupted was this:

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LibLink: Greg Mulholland MP: Drugs for ultra-rare diseases

Yesterday, Greg Mulholland held a Westminster Hall debate after constituents told him that the provision of drugs for their son was under threat because he has a very rare condition. You can read the transcript here.

People with rare conditions not only have to fight their illness, but also, because it’s rare, there is unlikely to be much in the way of research. Friends of mine have raised tens of thousands of pounds for research and to support other families after their baby son died of a rare neurological condition. Another friend set up a charity that brings together sufferers of her daughter’s rare disease from around the world every year and has worked to bring together specialists from various parts of the world.

There are huge question marks over funding for drugs for rare conditions after NHS England’s system was found to be discriminatory. Greg wrote for Politics Home explaining the issues and setting out what he wants the minister to do:

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Eric Avebury writes: Rare disease Day – a new report on care co-ordinators

rare-disease-day-logoTomorrow is International Rare Diseases Day, and I shall be asking in the Lords what contribution the Government are providing for the International Rare Diseases Research Consortium.

The EU defines a rare disease as one that affects no more than 5 in every 10,000 persons. But since between 6,000 and 8,000 such diseases have been identified, about 3.5  million patients are affected in the UK. Three quarters of these diseases can affect children, and nearly a third of the youngest patients die before their fifth birthday.

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