We are delighted to see that today the Scottish Medicines Consortium has confirmed that Odevixibat (Bylvay) will continue to be available for use by NHS Scotland as a possible treatment for progressive familial intrahepatic cholestasis (PFIC) in people six months and older  odevixibat (Bylvay)

This follows a reassessment process where further information was presented including evidence from our families on the difference that the drug has made to their lives.

Now that the final step of the drug approval re-assessment process is concluded, we know that the lives of children with PFIC in Scotland, and those who care for them, can continue to be transformed.

It is also very reassuring that this drug continues to be available across the UK so that PFIC patients and their parents will not experience a postcode lottery when accessing such an effective treatment.

We would like to thank all our PFIC families who played a part in getting us here including all of you who responded to our survey and in particular to our parent expert, Emily, who provided a powerful testimony of her daughter’s experience and the difference this drug has made to her family’s life.

Michelle Wilkins, our Head of Children and Families Service, said:
“We know that Odevixibat (Bylvay) makes a huge difference in the lives of children with PFIC and their families. We have been able to provide compelling evidence of this to the re-assessment committee and are delighted that they have confirmed today that it will continue to be available for use by NHS Scotland. It will continue to make a huge difference to those who use the drug now, but also to those who are diagnosed with PFIC in the future, reducing the devastating symptoms of this disease at the earliest stage.”

We will continue to work with our families and our partners on treatments to improve the lives of children with all forms of liver disease.