As a small patient community and a small charity we have to try and make sure our voice is heard in all parts of the UK.
We have always managed to get support from very active and vocal MPs. Christina Rees MP, Shadow Secretary of State for Wales, has always been very sympathetic to her constituents with PKU and was an early supporter of our work in Parliament. We have also had a great deal of help from Liz Savile Roberts MP who has long supported NSPKU member Mark Edwards.
APPG for PKU Vice Chair, Christina Rees MP
Recently we have been taking advocacy work directly to Wales. In January a group of NSPKU members attended a Cross Party Group meeting in the Welsh Assembly. Emily Steers attended with her baby Stanley. Emily spoke memorably about how difficult it can be to obtain her prescribed products. Claire and Tesni Rowlands talked about living with PKU for 18 years. Emma and Chris Cook talked about the frustration caused by the long wait for Kuvan.
As a result of this meeting, Angela Burns AM raised the challenges faced by living with PKU with the Welsh Health Minister.
Over the next year, we expect Kuvan will be considered by the Welsh health technology appraisal system and it will be important to continue raising awareness of access to Kuvan and other issues.