All Wales Medicines Strategy Group
The PNH alliance welcomes the announcement from the All Wales Medicines Strategy Group on funding for PNH services:
Recommendation of AWMSG
Eculizumab (Soliris®) is recommended for restricted use within NHS Wales according to agreed guidelines for the treatment of paroxysmal nocturnal haemoglobinuria.
AWMSG is of the opinion that eculizumab (Soliris®) is not suitable for shared care within NHS Wales.
AWMSG recommends that eculizumab (Soliris®) should only be used on an individual patient basis according to agreed guidelines.
- AWMSG considers that eculizumab (Soliris®) satisfies the AWMSG criteria for ultra orphan drug status.
- AWMSG will review the evidence on the use of this medicine within a period of three years.