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:

Posted in Op-eds | Also tagged , , , and | 16 Comments

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:

Posted in News | Also tagged and | 5 Comments

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.

Posted in News | Also tagged | 2 Comments
Advert



Recent Comments

  • User AvatarConor McGovern 23rd Jul - 9:54pm
    Gordon, the question is if industry thrives, will people necessarily?
  • User AvatarGordon 23rd Jul - 9:39pm
    In my first comment on this thread I said there are many strands to the problem Edwin raises so let me pull at one of...
  • User AvatarMick Taylor 23rd Jul - 8:53pm
    Actually Germany and many other countries have a threshold (often 5%) below which you cannot get seats when they use PR. The system favoured by...
  • User AvatarDavid Warren 23rd Jul - 8:38pm
    Congratulations and good luck.
  • User AvatarDevon Lib Dem 23rd Jul - 8:32pm
    Good results, again, and hopefully we have started to regain our local mojo. However, I am concerned about the propensity of local lib dem campaigns...
  • User AvatarSimon Banks 23rd Jul - 8:29pm
    First I've heard of that Forum, though I'm pleased to say our local party, which could have been near to collapse if the new member...
Sat 23rd Jul 2016
Sun 24th Jul 2016
Tue 26th Jul 2016
Thu 28th Jul 2016
Sat 30th Jul 2016
Mon 1st Aug 2016
Sat 6th Aug 2016
Wed 10th Aug 2016
Fri 12th Aug 2016
19:00
Thu 18th Aug 2016