Last week, Deputy Broughan wrote about access to Spinraza for SMA sufferers. Another treatment for a rare disease that he has consistently been raising has been access to Kuvan for people with PKU (Phenylketonuria).
Today, Deputy Broughan received the following welcome response from the HSE following his most recent Parliamentary Question on the matter:
This week I started my week with a board meeting of the Coolock Development Council, of which I am a founding Director. I then held my regular clinics in Darndale and Donnycarney before heading in to the Dáil office to prepare for a TV interview. On Tuesday, I spoke strongly in support of the Road Traffic (Amendment) Bill 2017 which will strengthen sanctions for those caught driving over the legal alcohol limit and will undoubtedly save lives. I met a delegation from PARC (Promoting Awareness, Responsibility and Care on our Roads), led by Ms Susan Gray and Mr Noel Clancy, who attended the debate. Later that night, I spoke in support of the Multi-Party Action Bill 2017 which would give people in Ireland access to multi-party (class) mass harm actions.
The Minister is very familiar with the rare genetic disease phenylketonuria where patients have difficulty processing the amino acid phenylalanine and therefore must live on very restricted, low-protein diet. We have had the report of the NCPE, which the HSE was considering. We have had two recommendations against sapropterin dihydrochloride, Kuvan, in the past nine years. A meeting was scheduled with the relevant drug company before Storm Ophelia occurred. Has a meeting happened and has information from the meeting been forwarded to the HSE drugs group? When will we get approval for the drug?
