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Patient experts help gain NICE approval for new IgA nephropathy treatment

14 November 2023

A new treatment to slow the progression of IgA nephropathy, a type of chronic kidney disease, has been approved by the National Institute for Health and Care Excellence (NICE). The announcement means that certain patients with the condition will soon have access via the NHS to budesonide, a drug which forms part of an approach which can enhance quality of life by delaying, or even avoiding, kidney failure.

Ben’s story

Ben Stokes, 35 from Maidenhead, was part of an expert panel of patients who shared their insight with decision makers on the life-changing impact that budesonide could have for people living with IgA nephropathy. First diagnosed when he was 22 years old, Ben knows better than most the profound difference that new treatments could make.

Reflecting on his own diagnosis, Ben says, “I can remember so clearly being told that there’s nothing that we can do to help you. There is no medication or treatment to stop it. It was tough to take, I had just finished university and had all these plans, and everything was turned on its head.”

Ben’s kidney function continued to decline throughout his twenties until he faced the imminent prospect of kidney failure. As symptoms of the disease became progressively worse, tiredness and fatigue meant he had to reduce his working hours which began to have significant financial implications. Ben was increasingly unable to enjoy his passion for fitness and felt the mental strain of worrying for his future. He says, “I felt like my batteries had run out, like everything was a struggle.”

At that point, the reality of the condition meant the only options to keep Ben alive were to be placed on a gruelling schedule of kidney dialysis or receive a kidney transplant, for which waiting lists can be several years long. Fortunately for Ben, 15 of his family and friends took the special step of offering to donate their own kidneys to expediate the process. Not everyone was a match, but Ben’s cousin was able to successfully donate his kidney leaving Ben feeling more optimistic for the future.

Young man laying in a hospital bed give a thumbs up.
Ben Stokes, post kidney transplant

Getting involved as a patient expert

When he became aware of the prospect of a new treatment for IgA nephropathy, Ben was keen to do anything he could to help make sure this became available on the NHS. He says, “I thought if there’s anything I can do to try and help people in that situation it was the right thing to do because I wish somebody had done that for me.”

Ben was selected as a patient expert in the NICE decision-making process to determine whether budesonide would be recommended for treating IgA nephropathy. He was required to complete a patient statement about his experiences for submission before attending a committee meeting with clinicians, industry and health economists from NICE.

He says, “I had a couple of meetings with Kidney Research UK to make sure I wanted to go ahead with it and to discuss what to expect. So it was all made very clear and there was no uncertainty over what would be required. I was very positive and felt comfortable in the meeting. Everyone was welcoming.”

Reflecting on the involvement of patients, Ben adds, “people that are affected by the decision should be part of the process because, like any disease, you don’t really know what it’s like to live it unless you have it. Until you feel the symptoms, you don’t really know the impact it can have”

What is budesonide?

Targeted-release Budesonide is a type of corticosteroid now recommended by NICE for use as part of treatment plans for IgA nephropathy (a type of chronic kidney disease). The drug reduces the production of IgA antibodies in the small intestine to prevent build-up in the kidneys which causes inflammation and scaring, ultimately leading to potential kidney failure. Budesonide will only be used as an add-on to existing care alongside angiotensin-converting enzyme (ACE) inhibitors or angiotensin-receptor blockers (ARBs).

What effect will this recommendation have on patients?

By slowing down the progression of IgA nephropathy, this new treatment could provide patients with many more years of kidney function before the prospect of kidney failure could become a reality.

Ben says, “I wish this medication had been available 10 years ago and then I might not be in the position that I’m in now. Somebody that might have taken ten years like me to get to end stage kidney function could take 20 or 30 years, or not ever get there.

I think there’s a huge mental health benefit in that too. Being able to take that a bit of comfort knowing that you are taking medication that is actually going to help.”

Ben is realistic about his own future and says, “transplant is a treatment. It's not a cure. So, I know that that battle for me is not over.”

He is positive about life though and has plans to fulfil some of his travel ambitions in 2024. He is positive too about the effect budesonide will have, saying, “if it can slow the decline for other people that would be amazing. There’s no end of benefit that this could have to somebody’s life and the things that they can do”

A welcome decision

Alison Railton, head of policy and external affairs at Kidney Research UK, says, “we welcome the decision from NICE to recommend budesonide as part of a new approach to treating IgA nephropathy. This type of chronic kidney disease can have a devastating impact on people’s lives, and so the prospect of slowing down its progression offers a great deal of hope.

We’re very glad that Ben, who has first-hand experience of the disease, was able to input into the NICE decision-making process. Involving patients and patient organisations as experts is invaluable in helping our regulatory bodies understand the far-reaching impacts that new treatments can have.”

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