NICE makes decision to not recommend reimbursement-Community Action Needed

We learned today that the National Institute for Health & Care Excellence  (NICE), the drug decision-making body for England and Wales, put forth a decision not to recommend reimbursement of Odevixibat which is indicated for the treatment of progressive familial intrahepatic cholestasis (PFIC) in patients aged 6 months or older. A similar decision is anticipated in France.

This is not NICE’s final decision and there will be a 4 week public consultation, where anyone with a view can comment. All interested parties are able to review the committee report and make a comments on any of the points that were raised. The committee will meet again on November 10, 2021 to review the consultation.

Click the link to make comments. Please note, you will need to create a login to comment.

Consultation | Odevixibat for treating progressive familial intrahepatic cholestasis [ID1570] | Guidance | NICE–The deadline for report is October 7, 2021.

NICE would be interested in receiving comments on the following: 

• What are the effects of PFIC on those living with the disease, their families and carers, including the emotional effect, impact on general wellbeing and the substantial financial impact on families?  
• How significant and urgent is the need for effective disease-modifying treatments for PFIC, and what are the limitations with current treatment?
• What impact will this treatment have on patients and caregivers’ quality of life if access was granted or deny?

Anyone with a view can comment and we would urge all interested parties to respond if they feel strongly about any of the points raised in the Evaluation Consultation Document (ECD). We hope that with enough feedback to from the community, we can make our voice heard and help ensure access to this important treatment for PFIC patients in the UK and eventually abroad.

Thank you for reading about the NICE drug decision.