30th June 2016

NHS Begins National Service to Treat aHUS

In 26th May 2016, National Health Service (NHS) has announced a plan to launch a national service to treat the rare kidney condition atypical Haemolytic Uraemic Syndrome (aHUS), and the administration of Alexion's high-cost Soliris.

A contract in a partnership between Newcastle Upon Tyne Hospitals NHS Foundation Trust and Newcastle University has been granted by the NHS England to oversee the treatment of patients with the aHUS condition. Under the agreement, Newcastle upon Tyne Hospitals NHS Foundation Trust will be the provider of a specialist service for aHUS and it will also supervise the treatment of patients in their local hospitals and provide expert advice to local clinicians.   

aHUS is an extremely rare prolonged condition. It causes severe inflammation of blood vessels and the development of blood clots in the small blood vessels throughout the body. It is caused by a deficiency in the immune system which can lead to irreversible kidney damage.

Within a year of diagnosis, up to 70% of patients with the aHUS condition will progress to end stage renal failure. Since, 31 December 2015, around 90 patients in the England were treated for the aHUS. About 60% of aHUS cases are detected in children and, in 70% of cases the child before the age of two.

In last year, National Institute for Health and Care Excellence (NICE) recommended the use of Alexion's Soliris (Eculizumab), which is the only proven treatment for the condition. The drug Eculizumab is very expensive, it is likely around £340,000 per patient.

A number of endorsement will be specified by NICE to the use of Eculizumab which include suggesting advice through an expert centre, as well as development of a national database for monitoring the use of the drug.

The collaboration between the Newcastle Foundation Trust and the University’s Faculty of Medical Science will help to advance national policy and resources, as well as counsel service for those for whom the treatment is not effective. It will establish a register of all patients and enhance investigation on eculizumab’s most-effective use.  

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