පාර්ලිමේන්තු විවාද

[Sri_Sampath]

පාර්ලිමේන්තු විවාද

Parliamentary debate calls for an end to the deadlock in failure to provide drug treatment for the rare disease PKU

General
Posted Thursday 22nd March 2018
Press release issued Thursday 22nd March 2018.

Vicky Ford MP (Chelmsford, Conservative) spoke at an adjournment debate in Parliament this afternoon about her constituent Cait Cotter. Ten year old Cait has the rare disease phenylketonuria (“PKU”) which was diagnosed as a newborn baby by the heel prick test.

PKU is a rare genetic metabolic disorder affecting around 1:10,000 people in the UK. People with PKU cannot metabolise phenylalanine, an amino acid found within protein foods. Currently, the only treatment funded in the UK is an extremely restricted dietary therapy in which almost all natural protein is removed from the diet. The majority of PKU patients in other European nations have access to the drug BH4 (Kuvan). The NHS does not currently commission Kuvan treatment.

අපේ රටේ මෙහෙම විවාද කවදාවත් වෙන එකක් නෑ

 

[Omega_Jay]

මේක තාම සංවරධනය වෙමින් පවතින රටක්නේ බන්

 

[Sri_Sampath]

මේක තාම සංවරධනය වෙමින් පවතින රටක්නේ බන්