CROWNE PLAZA HOTEL SANTRY – TUESDAY 9TH JAN 2018 – 7:30pm to 9:30pm
Karen Willetts, Karen Philips, Gwen Kennedy, Dr Pastores (Mater consultant) & Marianne McGovern (Mater Dietician) ,Gary Conway, Ciara Cadwell, Sinead Kearns , Fiona Kelly Kiernan, Amy Meegan (Nutricia) & Catherine Costello (Nutricia), Marianne Foody, Eric Lange via Skype, Bernadette Gilroy via Skype
Apologies: Fergus & Pauline Woodcock
Update on Kuvan & next Steps:
HSE/BIOMARIN currently in negotiations
Karen Willetts, Bernadette Gilroy & Dr Pastores met with NCPE head Michael Barry last November. Dr Pastores was in touch with Michael Barry today who has requested guidelines on dispensing from consultants asap for a committee meeting due to happen in the next month. Dr Pastores will send on guidelines for the dispensing of Kuvan to Adults this week. He and Karen will email contacts in Temple Street to get an update on where their guidelines are at for dispensing of Kuvan to children. Still no clarity on who is on the drug committee.
ADULT CLINIC UPDATE
Dr Pastores gave an update on where the Adult Clinic was at. Dr Pastores advises HSE’s NSP Plan for 2018 have been published and no mention of genetic or metabolic conditions in it.
The Adult clinic has received the resources requested up to phase 2 of the business plan Dr Pastores had submitted he awaits clarity on funding for phase 3 of his business plan.
Dr Pastores has applied for a PKU dedicated grant for a study to be based in the Mater on Adult Management and neurocognitive testing for comparison to other countries management & outcomes.
Ethics and funding, it sounds like, have been approved and expects to have funding in 1st quarter of this year – this will fund a 3rd dietician and dietetic assistant.
Mater still have no texting facility as the IT systems at Mater and Temple street can’t communicate due to firewalls etc.
New foods update
Still some companies waiting an update on products they submitted for LTI scheme – cambrooke being one.
No guideline or review dates set.
Temple street have updated their list of LP food information to include the Hooba vegan products on their website.
Nutricia reps Amy and Catherine do not have an update on status of any products but Catherine to get an update on their GMP supplement and what stage it is at here in Ireland.
CF IRELAND MEETING
Karen Willetts and Emer met with Philip Watt to get more insight and information on how they have approached setup of association, getting charity status and funding – Karen handed around a book on the CF charity and handouts on the medical research charities group (MRCG) and Health Research Board (HRB) – PKUAI to join the MRCG/HRB – membership is €150 for the year.
Our charity application is ongoing – both Fergus and Karen W working on this.
ERN and EURODIS
Gwen Kennedy filling in the application to join the patient group EPAG associated with ERN as a HCU patient but will also be there as PKU rep too. Gwen has posted link on facebook page to a EURODIS survey. Karen Willetts will add that link to the PKU website.
Dr Pastores confirms the Mater Adult Clinic to join the ERN as an Associate Member.
Dr Pastores says an Irish company have been given the contract to run the ERN patient registry – the same company that runs the CF registry.
NEW BORN SCREEN CARDS.
Simon Harris has come out against the destruction of these cards due to changes in the EU data protection laws and consent issues as to use of the cards. It was suggested we check out exactly what Simon Harris is proposing is done with those cards and how do we support ?
Karen W ran through who is currently funding us and asked for any new funding initiatives and ideas to be emailed to the pku association.
RAISING AWARENESS OF PKU
Gino Kenny was in touch with Bernadette and on Tues 16th January the minister is to answer Gino’s request for an update on the status of Kuvan for PKU.
Bernadette also mentioned Ann Sheridan of the Mail on Sunday looking for families in the Leinster area for an article.
Bernadette has done a piece with story stock for a media bank which is likely to be aired on TV AM in the coming weeks.
- Rare Diseases Day Feb 28th – IPPOSI likely to run an event which we could take part in.
- NSPKU 6 March18 – Bernadette will attend – funding there for 2 to attend if anyone else interested to get in touch with Karen Willetts.
- NSPKU running an event in April in Northern Ireland Eric Lange will send on further details.
- EURODIS have a yearly conference which will be worth attending – more details to follow.
- International PKU Day – 28th June – suggested PKUAI hold some sort of a meeting that day.
Bernadette asked for a call to our membership on volunteering their skills to promote PKU be in it IT/ADMIN/MEDIA/PHOTOGRAPHY/SCIENCES etc.
Nutricia intend holding an event around September/October details to follow – Catherine looking for any suggestions and ideas on what people would like. Amy looks after LP Products & Social Media – there has been some changes in roles in Nutricia so a new team looking after LP.
Next meeting date proposed 6th March. Venue to be agreed on.