PKUAI has been made aware of many patients’ concerns regarding the lack of action on implementing the Kuvan care pathway, and following advice from metabolic consultants, we have written to seek an urgent update on the availability of Kuvan from the CEO’s of the Mater and Temple Street hospitals and to express our concern over the lack of action since approval in January 2019. As you are aware Kuvan was approved for reimbursement in January 2019 by the HSE yet the care pathway is yet to be implemented.
Please see a copy of the letters which were sent by PKUAI on the 20th Jan 2020.
In order to get an update, we encourage our community to express their dissatisfaction to the CEO of the hospital they attend.
Please feel free to use our letter as a template to personalise your own letter and please send to the relevant hospital, details below:
Chief Executive/Internal Reviewer
Temple Street Children’s University Hospital
Tel: (01) 878 4232
Chief Executive Officer Mater Hospital
Tel: 01 8032203