What has SMC said?
The Scottish Medicines Consortium (SMC) has not recommended zilucoplan used together with other treatments for adults with generalised myasthenia gravis (gMG), which is a rare long-term autoimmune condition that leads to muscle weakness and tiredness. Zilucoplan is used in patients whose immune system produces antibodies against a protein called the acetylcholine receptor (anti-AChR positive gMG).
This document summarises the SMC decision and what it means for patients.
You can find more detailed information about the SMC assessment of zilucoplan by looking at the SMC Detailed Advice Document (SMC2830).
What does SMC’s decision mean for patients?
Zilucoplan for use as described above is described above should not normally be prescribed on the NHS in Scotland. Your healthcare professional should talk with you about other treatment options.
If your healthcare professional thinks you would benefit from it, they can make a request to prescribe zilucoplan. All health boards have procedures in place to consider these requests.
You can find more information about making decisions about your treatment here: Medicines in Scotland: What’s the right treatment for me?
More about SMC’s decision
SMC was unable to accept zilucoplan as described above for routine use. The evidence from the company about the benefits the medicine offers when compared to current treatments was not strong enough to justify the additional cost of the medicine. In addition, the company's evidence of the medicine’s value for money was not strong enough. This was despite using a more flexible* approach in the assessment as the medicine is for a rare condition.
How does SMC make its decision?
SMC carefully considers every new medicine to make sure it benefits patients and is likely to be a good use of NHS resources.
To do this SMC studies the following:
- Evidence from the company about how well the medicine works compared with current treatments available in Scotland, in relation to how much they will cost to buy and use to treat patients.
- Information from patient groups about the potential impact of the medicine on patients and carers.
- Advice from healthcare professionals about any benefits of the new medicine compared to current treatment, along with how the new medicine is likely to be used.
When SMC assesses a medicine it takes account of the needs of all patients in NHSScotland, not only those who may be treated with the medicine.
You can find out more about how SMC decides here: https://www.scottishmedicines.org.uk/how-we-decide/
More information and support
The organisations below can provide more information and support for people living with myasthenia gravis and their families. SMC is not responsible for the content of any information provided by external organisations.
Myaware
https://www.myaware.org
01332 290 219
Muscular Dystrophy UK
https://www.musculardystrophyuk.org
0800 652 6352
You can find out more about zilucoplan (brand name: Zilbrysq®) in the Patient Information Leaflet (PIL) by searching for the medicine name on the Medicines and Healthcare products Regulatory Agency (MHRA) website.
https://products.mhra.gov.uk/