Another myasthenia gravis treatment rejected for NHS use in the UK

9 March 2026

Zilucoplan (Zilbrysq), a treatment for myasthenia gravis, has not been accepted for use on the NHS in Scotland. It was also rejected for NHS use in England last year, although this is currently being reconsidered after our successful appeal.

For people living with myasthenia gravis, this is yet another setback. Zilucoplan was one of two treatments that were turned down in England in 2025, and a decision on a third treatment is expected soon. If these decisions continue to be negative, people across the UK will be left without access to medicines described as truly life‑changing.

Myasthenia gravis is a rare condition where the immune system attacks the place where nerves and muscles meet. When this happens, messages from the brain do not reach the muscles properly. This can cause muscle weakness, tiredness and problems with everyday tasks. Many people have to give up activities they enjoy, struggle to work or plan each day very carefully just to manage.

Limited treatment options

Even though the condition can have a big impact on daily life, treatment options are still very limited. Common treatments, like steroids or immunosuppressants, are not specific to myasthenia gravis, and for some people they simply do not work. When this happens, people may rely on hospital-based treatments.

These treatments were never meant to be used long term for myasthenia gravis. They can be invasive, unpredictable and very disruptive. They are also costly. But they have become the only option because modern, targeted treatments have not been available. Now that new treatments do exist, they are being rejected, leaving people without the help they urgently need.

Why was it not accepted?

The Scottish Medicines Consortium (SMC) stated that the treatment was not good enough value for money based on the price currently provided.

What’s next?

After a rejection, the company has up to three months to make a resubmission if they choose to. We hope the company use this opportunity to put forward a stronger case – one that shows the treatment could be funded by the NHS and clearly explains the difference zilucoplan could make for people living with myasthenia gravis.

We will keep working alongside the charity Myaware and keep pushing for access to this treatment, making sure the voices of people living with myasthenia gravis are heard at every step.

We’ll be following the process closely and will share updates as soon as we have them.

What about the rest of the UK?

In England, zilucoplan is being reconsidered after we, and our partners, successfully appealed the decision. This does not guarantee approval, but it does give the treatment another chance. We are still waiting to hear when the next steps in the England review will take place.

Northern Ireland and Wales normally follow the decision made in England.