NICE (National Institute for Health and Care Excellence) have recommended sparsentan, a new drug for IgA nephropathy (IgAN), is not made available on the NHS for patients with this kidney condition. This is a draft recommendation and may change once the consultation process is complete.
Guy Hill, a member of Kidney Care UK’s Patient Advisory Group (PAG), acted as a patient expert for NICE during this appraisal. He highlighted the impact that IgAN has on quality of life and how it can affect people’s ability to work, travel and maintain relationships. He emphasised the importance of finding a treatment that could slow down the progression of the disease and the hope that this would offer people with IgAN.
I used the opportunity to stress that IgAN often affects a younger group of patients and is therefore extremely disruptive to people’s lives as they may have young families or are starting out in their careers. One problem is that, because IgAN has few symptoms, it is often not picked up until it has significantly progressed. IgAN patients would benefit most from access to treatments that can slow progression at an early stage of disease.Guy Hill, a member of Kidney Care UK’s Patient Advisory Group (PAG)
NICE concluded that although sparsentan did have some benefits, including reducing the amount of protein in the urine, there was not strong enough evidence that it was sufficiently clinically or cost effective for usage within the NHS.
This is not the final decision from NICE and the draft guidance is open for consultation until 25 March 2025. The response to the consultation will be considered at a further NICE meeting in April before final guidance is issued, which will set out whether this medicine is recommended for treatment on the NHS. Please keep an eye on our website for further updates.
Other treatments for IgAN are available on the NHS and there are a number of clinical trials taking place to research further treatment options.