Kidney Research UK welcomes reversal of NICE decision on sparsentan for patients with rare IgA nephropathy
Kidney Research UK is celebrating a reversal of the draft decision by NICE (the National Institute for Health and Care Excellence) not to back sparsentan, a treatment for patients with IgA nephropathy (IgAN), following a negotiated commercial agreement with the drug’s manufacturer.
The revised decision published today (23 May 2025) on NICE’s website means that the new treatment will now be recommended for patients in England with the condition.
Good news for kidney patients
“This is very welcome news; it’s only the second treatment tailored specifically for IgAN patients that has been made available and could potentially revolutionise lives,” explained Alison Railton, director of policy and public affairs at Kidney Research UK.
“We’re really pleased to have been part of the consultation process helping toward this. This is a common-sense decision that may enable future patients diagnosed with the disease to continue working, being active in their family life, community, maybe enjoying sports and hobbies and so much more.”
What is sparsentan?
Sparsentan works by blocking two hormone receptors involved in processes that damage the kidney, reducing the high levels of protein that otherwise leak into the urine, and slowing down the progression of the disease. Treatment could therefore slow down, or even prevent, disease progression and mean that patients with IgAN – most of whom are under 40 years old when diagnosed – could be spared the need for gruelling dialysis or a kidney transplant.
A life-changing decision
IgAN patient Ben Stokes who gave evidence to the NICE committee said: “I am delighted NICE has reversed its original decision on sparsentan. This could be a life changing decision for patients living with the disease.
“I was only 24 years old when I was diagnosed, and I vividly remember being told there were no treatments available. I wouldn’t wish that moment on anyone. Sparsentan could have delayed, or possibly even removed, the need for the kidney transplant I had in 2023.
“Having more treatment options available for IgAN patients will have an enormous impact on their mental and physical wellbeing, hopefully enabling them to lead more normal lives.”
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