NHS England establishes national service to treat rare kidney condition aHUS

NHS England has today announced that a collaboration between Newcastle Upon Tyne Hospitals NHS Foundation Trust and Newcastle University has been awarded a contract to oversee the treatment of patients with aHUS, a rare, progressive condition which can lead to renal failure.

Atypical Haemolytic Uraemic Syndrome (aHUS) is an extremely rare chronic condition which causes severe inflammation of blood vessels and the formation of blood clots in the small blood vessels throughout the body.

Up to 70% of patients with the condition will progress to end stage renal failure within a year of diagnosis, requiring dialysis. Around 60% of aHUS cases are detected in children and, in 70% of cases, before the child reaches the age of two.

Around 90 patients in England were being treated for the condition as of 31 December 2015.

The drug Eculizumab is the only known effective treatment for this condition, as recommended by NICE in January 2015.

NICE stipulated a number of recommendations attached to its use, including the development of a national database for monitoring the use of the drug, as well as coordination of its prescribing through an expert centre.

Under the agreement, specialists at the Trust will provide expert diagnostic services, as well as advice to local hospitals on the ongoing treatment of patients with aHUS with the high-cost drug eculizumab.

The partnership between the Trust and the University’s Faculty of Medical Science will also help develop national policy and resources, including establishing a register of all patients, counselling services for those for whom treatment is not effective, and further research on eculizumab’s most-effective use.

NHS England initially appointed Newcastle Upon Tyne Hospitals NHS Foundation Trust as the interim expert centre in order to ensure that NICE’s directive could be implemented in the statutory timeframe of 90 days from publication. The award of this contract, which runs for up to five years, follows a competitive tendering process.

Experts at the centre will also be able to provide advice to other hospitals on the management of patients with conditions related to aHUS, such as bone marrow transplant associated thrombotic microangiopathy and C3 glomerulopathy, but for which eculizumab is not currently routinely commissioned.