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A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

aHUSUK members taking petition to David Cameron right now

Right now desperate patients and families call on Prime Minister at Downing Street to commission a life-saving drug.

At this moment Six desperate atypical Haemolytic Uraemic Syndrome (aHUS) patients, family and carers today (Tuesday, March 26th 2013) presented a petition to the Prime Minister to ask him to direct the NHS National Commissioning Board to give all aHUS patients access to the only treatment available to cure this rare and often fatal disease, eculizumab (known as Soliris), immediately.

They have been forced to bring their plight to the attention of the Prime Minister because his government’s Health Ministers have chosen to ignore a recommendation by the Advisory Group for National Specialised Service (AGNSS) to provide eculizumab to all in England who need it.

AGNSS came to this positive conclusion after nearly eighteen months of study during which it found that eculizumab is clinically effective in preventing death or kidney failure in those with aHUS. It also enables those who have survived an episode in the past, but are facing a life on dialysis, to have a successful transplant.  AGNSS also recognised that without the availability of Soliris 25% of patients will die and about 60% of those who survive will develop end-stage renal failure requiring lifelong dialysis.  As a result AGNSS decided that the provision of Soliris would be a wise use of NHS resource.

Commenting of the urgent visit to Downing Street, aHUSUK Trustee Ian Woodward says: “The Department of Health Ministers have condemned sufferers of aHUS to frightening and uncertain future.  In the time it will take for NICE to get its protocols and evaluation methodologies set up, children and adults will die.  There is only one treatment for this rare and horrific disease.  It is available now, it works and it saves lives.   We hope the Prime Minister will encourage his Ministers to do the right thing and ensure that those with rare diseases are treated fairly and promptly by our national health service”

The six patients, family and carers are appealing on behalf of all patients and the members of the public who are supporting them in their thousands.

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