Kidney Advocacy Groups Disappointed by Draft NICE Decision
A recent draft decision by the National Institute for Health and Care Excellence (NICE) has caused frustration among kidney patients and advocacy groups. On March 4, 2025, NICE announced that it would not approve Sparsentan, a promising new treatment for IgA nephropathy (IgAN), for NHS funding at this stage.
This decision comes as a setback for patients living with IgA nephropathy, a progressive form of chronic kidney disease (CKD), who had hoped that Sparsentan could provide a new treatment option to slow kidney damage and delay dialysis or transplant.
While the decision is not yet final, it raises concerns about how new treatments for kidney disease are assessed and made available on the NHS.
What Is IgA Nephropathy and Why Is Treatment Important?
IgA nephropathy (IgAN) is a rare autoimmune kidney disease where immunoglobulin A (IgA) builds up in the kidneys, causing inflammation and long-term damage. Over time, this can lead to kidney failure, requiring dialysis or a kidney transplant.
Current kidney disease treatment for IgAN includes blood pressure medications, steroids, and lifestyle changes, but they do not work for everyone. Many patients have been waiting for new kidney disease medications that can more effectively slow the progression of the condition.
Why Was Sparsentan Rejected?
Sparsentan is a dual endothelin and angiotensin receptor antagonist (DEARA) that has been shown in clinical trials to reduce proteinuria (protein in urine)—a key sign of kidney damage—and slow the progression of IgA nephropathy.
Despite its potential benefits, NICE’s draft guidance states that the drug does not currently meet NHS cost-effectiveness thresholds. This means that, as things stand, sparsentan will not be made available through NHS kidney treatment pathways.
However, kidney patient advocacy groups like Kidney Research UK have urged NICE to reconsider, highlighting the urgent need for more effective kidney disease treatments and the lack of options currently available for IgA nephropathy patients in the UK.
What Happens Next?
NICE will review further evidence and feedback before making its final decision. Kidney charities and patient representatives will continue to advocate for improved access to kidney disease medications like Sparsentan.
For now, patients with IgA nephropathy should continue working with their renal consultants to explore available kidney disease treatment options.
MRIKPA will continue to monitor updates on NICE’s decision regardingSparsentan and provide information on new developments.
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For more kidney health research and to stay updated on IgA Nephropathy treatments, visit our Latest News & Updates page
What is Sparsentan?
Sparsentan is a medication for IgA nephropathy (IgAN) that works by reducing proteinuria (protein in urine)and protecting kidney function. It has shown promise in slowing the progression of chronic kidney disease (CKD).
Why is sparsentan important for IgA nephropathy patients?
Unlike many other kidney disease medications, Sparsentan directly targets both endothelin and angiotensin receptors, which play a key role in IgA nephropathy progression. Clinical trials showed it could significantly slow kidney damage.
Why are NICE considering rejecting Sparsentan?
NICE’s draft decision states that the drug’s cost-effectiveness does not currently meet the NHS’s funding criteria. However, further reviews and kidney patient advocacy efforts may influence the final decision.
Is the NICE decision final?
No, this is a draft ruling. Further consultation and advocacy efforts may impact NICE’s final recommendation.
Visit the NICE webpage about the project to read the committee papers HERE
Can I still access sparsentan in the UK?
At this stage, sparsentan is not available through NHS kidney treatment pathways. Some patients may be able to access it through clinical trials or private healthcare.
What should I do if I have IgA nephropathy?
If you have IgA nephropathy, talk to your renal consultant about the best available kidney disease treatments. You can also support advocacy efforts to help improve access to new kidney medications in the UK.
Learn more about IgA Nephropathy on the Kidney Research UK Website: HERE
