Disappointment at draft NICE decision to reject drug for rare IgA nephropathy
Sparsentan, a new treatment for kidney patients with IgA nephropathy (IgAN), is not to be recommended for NHS funding following a NICE (National Institute for Health and Care Excellence) evaluation committee recommendation published Tuesday 4 March.
The recommendation, which may change following further consultation, recognises that sparsentan reduces the amount of protein in a patient’s urine but was less certain that it maintained kidney function better than current treatment.
About IgAN
IgAN affects about one in 50,000 people in the UK. Caused by clumps of antibodies being deposited in the kidney blood vessels, it leads to inflammation and damage to the nephron, the functional unit of the kidney that filters waste from the blood.
Symptomless in its early stages, IgAN develops in younger adults (under 40 years) who are otherwise fit and well. Exact causes are not well understood, and diagnosis often comes out of the blue. As symptoms become progressively worse, a gruelling schedule of kidney dialysis or a kidney transplant – which may involve waiting for several years – are the only options to keep patients alive.
Treatments for IgAN
Currently, treatments that can proactively slow down or prevent a decline in kidney function for IgAN patients are limited; this can place a huge toll on patients’ emotional wellbeing.
A new treatment that could slow disease progression would be a ‘game-changer’ for IgAN patients as well as providing hope for their future.
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.
By delaying further kidney damage, sparsentan could delay the need for IgAN patients to undergo dialysis or transplantation, both of which are expensive and have associated risks and side effects. Delaying this need, could result in significant cost savings and give patients the opportunity to better prepare.
“We believe there is compelling evidence to make sparsentan available to patients on the NHS,’ said Alison Railton, director of policy and public affairs at Kidney Research UK. ‘This is hugely disappointing decision for people living with IgAN and we urge NICE to reconsider its draft recommendation.”
“We believe sparsentan is a valuable treatment option that could delay, or even prevent, the need for IgAN patients to undergo dialysis or a transplant – both expensive treatments which can significantly impact quality of life and ability to work,” she added.
IgAN patient Ben Stokes, who gave evidence to the NICE committee, said:
“This news is a huge blow to IgAN patients living with this incurable disease and potentially being denied a treatment that could help them live a longer and healthier life.
There is currently only one treatment prescribed specifically for IgAN, so it is important for patients to have an alternative, or additional treatment, if one is available."
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