Madeleine Moon MP for Bridgend spoke very supportively for aHUS patients during the Queens Speech Debate in Parliament.The following is an extract from Hansard …..
Mrs Madeleine Moon (Bridgend) (Lab): We also need to look at the availability of treatment and medication that make a difference to people’s lives. I want to talk briefly about a condition that really shocks me and the carers of those who have it: aHUS, or atypical hemolytic uremic syndrome. I am the co-chair of the all-party kidney group. A few weeks ago I chaired a meeting of people with aHUS. There is a drug available for the condition that is called—excuse me, Madam Deputy Speaker, but it is a dreadful drug to pronounce—eculizumab. It sounds like some sort of African tribe, but that is what it is called. Taking eculizumab can virtually cure someone with aHUS. They get their life back. We are talking about a very small number of people who have the condition—less than 170. The typical form is triggered by a bacterial infection such as E. coli; the atypical form is genetic. We heard tragic evidence from families in which perhaps three or four generations of children and adults carried the genetic trigger. More importantly, the only treatment other than taking eculizumab is to have dialysis on a virtually daily basis. We heard from carers who have to place the extremely painful and long needles needed for dialysis into their children’s arms. Those children cannot have a kidney transplant because the transplant would almost certainly have the same condition. Even if they had a transplant, they would continue to need dialysis.
I am appalled to learn that the Government have agreed that those who are taking the drug on a trial basis may continue to take it, while those who have already been diagnosed but refused access to the drug on a trial basis will not be allowed access to it. Newly diagnosed patients will, however, have access to it. That is nonsense. We could save a large amount of money, and we could save those patients the trauma of daily dialysis. The drug was recommended for use by the Advisory Group for National Specialised Services and it has now been submitted to the National Institute for Health and Clinical Excellence for further appraisal. Sufferers of the condition might therefore have to wait until 2014 to get access to it, which is totally unacceptable.
Madam Deputy Speaker, I am sorry that I shall not be able to stay for the winding-up speeches, but I hope that the Minister will consider whether it might be possible for access to this drug to be extended to all sufferers of aHUS, so that they and their carers can once more have a decent quality of life, and so that the NHS can save money.
Here is a link to her full speech which also addresses the issue of “caring” which will be interesting to aHUS families and carers( scroll to column 442)