Appeal success sees myasthenia gravis treatment zilucoplan reconsidered for NHS use in England 

28 January 2026

Our appeal against the decision not to fund zilucoplan (Zilbrysq) on the NHS in England has been successful. The review panel accepted several of the concerns raised by us and other organisations, meaning the case will now be reconsidered. While there’s no guarantee the final outcome will change, it gives zilucoplan another opportunity to be approved.

Back in June 2025, the National Institute of Health and Care Excellence (NICE) acknowledged that zilucoplan can benefit people living with myasthenia gravis, but concluded the benefit wasn’t enough to justify the cost to the NHS. This meant that zilucoplan would not be funded through the NHS. 

For those who don’t respond to current treatments, this was a huge setback. It means continuing to face symptoms that can stop people from working, taking part in family life, being independent, and living life to the full. 

Since then, we’ve worked alongside people living with myasthenia gravis and clinicians to appeal the decision. The charity Myaware, the Association of British Neurologists, and the company behind zilucoplan also appealed – reflecting shared concern that the decision doesn’t reflect the treatment’s value and the difference it could make for people’s lives.  

At a meeting in November 2025, an independent panel considered 20 appeal points in total, including four raised by us. In the end, the panel upheld five points – including a key issue brought forward by all the organisations who appealed. While we had hoped more points would be successful, these five led the panel to ask NICE to reconsider parts of its decision. 

What does this mean? 

Having appeal points upheld doesn’t mean zilucoplan will now be available on the NHS. Instead, it means the independent panel found issues with parts of the original process and has told NICE to review the decision again. 

This gives the committee another opportunity to reconsider the treatment – but it doesn’t guarantee a different result. While we hope this leads to approval, the committee may still decide to confirm its original decision. 

Why the panel asked NICE to review the decision again  

One issue stood out during the appeal: Minimal Symptom Expression (MSE). This is when someone has no or very few symptoms – something many people living with myasthenia gravis describe as life changing. 

During the original assessment, NICE excluded MSE from its decision-making. We challenged this alongside the other organisations appealing the decision. Together, we raised four separate appeal points on MSE, because it reflects improvements that matter deeply to people’s day-to-day lives.  

The independent panel agreed it was unreasonable to exclude this outcome without fully exploring how it could be used. 

The panel also found issues with how NICE considered whether people might need additional treatment after taking zilucoplan. Because zilucoplan is a relatively new medicine, there isn’t much longterm data showing what happens over several years, including whether people might need other treatments later in their lives. 

NICE tried to factor this into its analysis but didn’t clearly explain how certain data was used. The appeal panel felt this lack of transparency made the process unfair. 

What happens next?  

NICE will now take another look at its decision not to approve zilucoplan for NHS use in England. The committee will meet again to reassess the evidence and data in line with the panel’s instructions. 

After this review, the committee will issue a new decision. We expect the meeting to be held in the Spring and will share updates as soon as we know more. 

What about the rest of the UK?  

In Scotland, zilucoplan is currently being assessed by the Scottish Medicines Consortium (SMC). Alongside Myaware, we’re making sure the experiences of people living with myasthenia gravis, and the impact this treatment can have, are front and centre. A decision is expected in March 2026. 

Northern Ireland and Wales normally follow NICE decisions.