Minutes PKUAI meeting 30th Aug 2018 at 7.30pm at the Clayton Airport Hotel, Dublin

Attendees: Fergus Woodcock, Karen Willetts, Karen Lavery, Nicola Whelan via skype, Amy Meegan (Nutricia), Pauline Woodcock, Colm Galligan, Gary Conway, Ciara Cadwell, Riah Berry and Mark (Mevalia), Darina Crean, Claire & Glen Campbell (and their lovely daughter Florence), Laurin Grabowsky (Mater staff), Alison Sheerin (Mater staff), Aisling White (Mater staff), Suranga Senanayake (Mater staff)

Mevalia presentation followed by Q & A – Presentation of the Mevalia company and their low protein food products and amino acid formulas. Followed by a summary of Mevalia’s work so far in Ireland and what needs to happen to make these products available to Irish patients. We were advised that Mevalia plan to submit an application to the HSE for some low protein products and Amino Acid formulas to be added to the LTI list by the end of 2018. This is a long process and we could expect to wait at least 12 month before patients have access to the products.

Raffle for Vitaflo sponsored ESPKU conference- Well done to Liz O’Farrell and Robert Sexton. The 3rd place goes to a PKU researcher.

Mater’s PKU research – better understanding the impact of PKU. Staff at the Mater are looking for participants both with PKU and non PKU for their PKU Study. They require some tests to be completed in the Mater clinic but these are easy, some people even enjoy them, and in no way should put people off participating. Support can be provided to assist attendance of those participating. If you are in a position to help please contact LaurinGrabowsky@mater.ie

International PKU Day 28th June 2018. – PKUAI hosted a breakfast briefing in the morning of the 28th June at Buswell’s hotel beside the Dail. We invited all TD’s and key people in the PKU world to attend. Bernadette Gilroy presented as the PKUAI spokesperson, David Maguire an adult living with PKU shared his lived experience and Kirstin Ahrung a dietician based in Denmark who is on the board of ESPKU spoke about the evolution of PKU treatment. This event was well attended by TD’s or their representatives, medical staff working in PKU here in Ireland, low protein food companies, the pharma industry, and of course people living with PKU along with their carers and family. On the evening of the 28th we held a social evening at the Clayton airport hotel where everyone in attendance enjoyed a low protein meal and music provided by our PKU DJ Rob Sexton. We shared free samples of Violife cheese and Green Cola which is aspartame free. There is no doubt that International PKU day was well marked here in Ireland!

NPKUA Conference in America – Unfortunately Bernadette Gilroy was unable to make the meeting so she will be sharing news on research taking place in America at the next meeting. It was noted that the NPKUA are encouraging participation of patients to their Patient registry and it was thought that Irish patients completing this too would be a good idea. There is lots of work in America taking place to develop a home PHE monitoring kit. Unfortunately progress is slow here.

ESPKU – A big thank you to ESPKU for the EU Parliamentary event took place at the start of July.  The aim of this was to highlight PKU at a European level. It was hosted by 2 Irish MEPS, Deirdre Clune and Nessa Childers. Please let Deirdre or Nessa know that you appreciate their support. Please tweet your thanks to  @NChildersMEP and @DeirdreCluneMEP .   Or email them at nessa.childers@europarl.europa.eu and deirdre.clune@europarl.europa.eu Ireland was well represent with Deirdre and Nessa along with Dr Monavari (metabolic lead consultant at Temple St) and representatives from the PKUAI. The main issues raised were inadequate Newborn screening in some areas of the EU, food labeling, health technologies assessments and HPA (mild PKU).

PKUAI Charity status. Unfortunately the Charities regulator require more information from us which Fergus will resend.

Kuvan – Kuvan is due to come before the next HSE’s drugs group meeting in September. There is no guarantee that Kuvan will be discussed at this meeting and it is quite normal for a good deal of time to pass before patient groups are told the outcome from the meeting. However following our feedback on the guidelines for prescribing Kuvan we remain hopeful.

Sugar Tax – with the introduction of the sugar tax many drinks companies are using aspartame to sweeten their drinks. Please always check the labels. This issue has been brought to the attention of the Minister for Health and in the Seanad.

Restaurants catering for PKU – Irish Law. Due to food safety regulations it would seem that more and more restaurants do not allow you to bring in your own food. A question asking if there was anything in Irish law that PKU patients should be aware of was raised. Unfortunately no one was aware of anything that would support a PKU patient bringing their own food to a restaurant. It is advised that before going to a restaurant, give them a call to see if/how they can cater for a PKU diet. If you come across a restaurant that is particularly helpful please share this info by posting on our facebook group or emailing info@pku.ie and it can be shared.

Brexit – Should we have any concern? There are some concerns especially with smaller UK based low protein food suppliers. It is primarily the responsibility of the HSE to ensure an uninterrupted supply of medically critical specialized food. A parliamentary question will the raised asking the HSE what contingency plans will be put in place in order to avoid an interruption or cessation of supply of these products following the UK’s departure from the EU.

Upcoming events: Vitaflo will be hosting events in Dublin, Cork, Limerick and Galway the week starting 15th October, more info will follow with official invites. Nutricia are hosting the Low Protein living weekend in Trim Castle on the 13th October. ESPKU conference will take place in Venice this year on the 1st November.

Next meeting date set for the 20th November.