Decision-makers in Scotland have agreed to fund Hyftor (topical sirolimus) through NHS Scotland to treat facial angiofibromas (marks and bumps on the face caused by TSC)
The TSA is delighted that the Scottish Medicines Consortium (SMC) has recognised that Hyftor (topical sirolimus) is an important medicine in improving the lives of people with TSC. This news means that Hyftor can now be prescribed by doctors in NHS Scotland for people with TSC aged 6 years and older with facial angiofibromas.
In our meetings with the SMC we made sure that the views of the TSC community were loud and clear. As part of this, the first-hand experiences and voices of the TSC community were central to our arguments.
Dr Pooja Takhar (TSA Joint Chief Executive) commented: “Facial angiofibromas are an incredibly difficult aspect of TSC for thousands of people throughout the UK. They have a major impact on everyday life and for many people are their main challenge in TSC. We’re thankful to the SMC for their decision and are so pleased to have another important treatment option in TSC. Our work doesn’t stop here, as we continue to push for funding for Hyftor throughout the UK.”
Hyftor has been proven effective in improving facial angiofibromas compared to placebo products. As part of their review of whether to fund a medicine, the SMC considers things like how well the medicine works, the impact it will have on individuals, and how much the medicine will cost.
Individuals and families in Scotland with TSC and facial angiofibromas should contact their GP or healthcare professional to discuss whether Hyftor is right for you.
Hyftor is already approved across the UK as being safe and effective. However, it has not yet received funding approval other than in NHS Scotland. Those who live outside of Scotland and think they may benefit from Hyftor should speak to their TSC Clinic to explore options in accessing the medicine.
