Minutes of meeting 21st June 7.30pm Clayton Airport Hotel.
Meeting facilitator: PKU Association Chairman Fergus Woodcock
Attendees: Dr Greg Pastores, Pauline Woodcock, Karen Willetts, Ciara Cadwell, Gary Conway, Sinead Kearns, Karen Phillips, Jennie Daly, Karen Lavery, Colin Donnelly, Cliona Donnelly, Fiona Keane, Dereck O’Neill, Sarah Hodges, Tania Marsh, Elaine Hodges, Laura McNamara, Fiona Kelly Kiernan, Susan Reddy, Breda Mooney, Niamh Cornally, Megan Earls.

Agenda item: Promin and Metax product presentation and Q&A. Linda and Stephen Fletcher (founders) along with Katya Sheridan joined us from Promin. They introduced their company and outlined their products which are available through their website http://www.prominpku.com/ Some of these products are already available on the Long term illness scheme. This was followed by a presentation from Metax, a German Low protein company, who introduced their company and presented their product range. Some of Metax’s products are available to purchase through Promin’s website. Samples were handed out. Please try the samples, let Promin/Metax know what you think of them. Please discuss your thoughts on the products with the staff at Temple St and please raise the issue with your local TD.

Special Agenda item: We were delighted to have Dr Pastores, Metabolic Consultant at the Mater’s adult clinic join our meeting. Dr. Pastores introduced himself to us and gave a brief outline of his experience to date. He spoke about the development of the adult clinic in the Mater. He explained that he joined our meeting in order to hear directly from us the issues which are affecting the PKU community in Ireland. He also spoke of the importance of patient associations in ensuring optimal treatment for patients.

Agenda Item: Low protein/protein substitute products not available in Ireland – Here is an update on the official complaint from Fergus –
“The letter has been finalised and it is hoped to be posted in the next few days once all the attachments are ready. The delay was due to waiting for a letter of support for the complaint from either Temple St or Mater metabolic units. Fergus was contacted recently and was informed that as the Metabolic Unit in Temple St was now in regular contact with Kate Mulveney. Fergus explained that Temple St had been onto Pauline after his conversation in relation to the letter of support and they had requested that the complaint letter is put on hold. After years of the not hearing from Kate Mulveney in respect various issues that the Unit have in respect of different metabolic conditions dialog has recently opened up. They were having regular meetings in relation to various different conditions and the meetings are progressing. Fergus was not keen on delaying the letter as they would probably not get to the PKU foodstuffs until December. The delay was too long. After the meeting on the 21 June Fergus had a call from the metabolic unit in Temple St following on from their call to Pauline to request that the letter is delayed. They explained that they felt that the complaint may be counter productive given the progress that has been made. After given all the discussions careful consideration the letter has been put on hold.”

Agenda item: Kuvan – Update on HSE assessment and rare disease plan and Pegpal. Karen Willetts advised that Biomarin, Kuvan’s drug company, met with the HSE last month. Biomarin were advised that they have to re-do a full Health Technology Assessment (HTA) with the NCPE. See www.ncpe.ie for details. Biomarin hope to have their submission for Kuvan ready by October 2016.
Karen Willetts explained that Kuvan is a rare disease and falls under the National Rare disease plan. This plan was published in 2014 and there are a few recommendations within the plan that relate to kuvan’s assessment and will relate to the assessment of possible future treatments for PKU such as PEGPAL. One is the recommendation that the HSE set up a committee to assess reimbursement of orphan medicines and technologies. The HSE announced a couple of months ago that it has officially begun the process of forming the Rare Diseases Technology Review Committee, which will bring forward appropriate decision criteria for the reimbursement of Orphan Drugs (ODs) in Ireland. The committee will also consider an appropriate assessment system for ODs, similar to that for cancer therapies established under the National Cancer Control Programme. However we still do not have a timeline for when the committee will be in existence or any idea on the make-up of the committee. The second recommendation is about the setting up of a national budget to fund such treatments so that there is not an impact on individual hospital budgets i.e. Temple Street and the Mater. There has been no news on this recommendation. If these 2 recommendations were in place, improvements on the way PKU is treated could be much more easily achieved. In fact anyone suffering from a rare condition could find that they would benefit from the implementation of these recommendations.
We now have a new Government and a new Minister for Health – Simon Harris TD. Simon had already been made aware of the HSE’s assessment of Kuvan and we urge everyone to contact him or in deed their local TD to raise these issues with the Rare Disease plan and to enquire about progress on the HSE’s assessment of Kuvan. Karen Willetts will post a copy of the letter she wrote to her local TD on the facebook page (completed 18/5/2016). If you would like Karen to forward you a copy of the letter please get in touch.

Agenda Item: ESPKU Conference – It was agreed we would have an exhibition stand at the ESPKU conference. If anyone would like to get involved in organising this please get in touch. We are still compiling a list of potential speakers for the conference. We are still looking for a VIP to open the conference. Please get in touch if you have any suggestions. The ESPKU are hoping to open for registration on the 28th June, International PKU day. As soon as we have news we will let you know. In the meantime please save the date 3rd to 6th November.
Update 11/8/2016: Please sign up for the ESPKU conference on their website. Presently it is possible to sign up for the whole event. It will be possible to attend as a day visitor, please keep as eye on the facebook page and the ESPKU website to see when registration for day visitors is open. http://www.espku.org/conferences/e-s-pku-conference-2016/

Agenda Item: Other metabolic conditions on LP Diets – work has commenced on reflecting the fact that the PKUAI will be more inclusive to other metabolic conditions treated with a low protein diet on our website/facebook etc. This work will continue.

Agenda items: Fund raising initiatives – we have been busy fundraising and thank everyone who have already generously donated. Chairman Fergus Woodcock, Treasurer Karen Philip Wood and Secretary Karen Willetts will meet in the coming weeks to agree on a process for receiving and spending funds in order to successfully achieve our aims for 2016/2017.

Agenda Item: Raising awareness of PKU – our website, media. Raising awareness of PKU – our website needs further development. If anyone could help with this please get in touch. If you have any media contacts please use them to raise awareness of PKU in the general population.

Agenda item: Bloods – The issue of processing bloods was discussed. Adult PKU members explained that it can take up to 2 weeks to receive blood results. They do not have the texting service and would like this implemented in the Adult clinic.

Next meeting date 30th August.