CEO's Report to NEC - June 30 2007
NEC Meeting 30th June 2007 – CEO’s Report
This report covers activities from the 26th May 2007, date of the last NEC meeting.
Campaigns
Election Campaign – Sick Waiting
This campaign received considerable media coverage during the build up to the General Election. The true success of this campaign can only be evaluated by the heightened awareness about CF and the delivery of improved facilities and services. It must be noted that the campaign continues. Copies of the campaign material have now been sent to all newly elected deputies to the Dáil. The follow up has now commenced with the Taoiseach, the Minister of Health, the HSE and all Deputies that have offered support. Once the Senate elections are finalised all newly elected and appointed senators will also receive our campaign pack. We printed over 15,000 postcards addressed to the Minister of Health. It is very important that these are now returned from members as soon as possible as it gives the Association the opportunity to get further media coverage when they are delivered by hand to the Minister of Health. The campaign will continue for the remainder of the year and I encourage everyone to continue to use all the material provided to highlight the very serious shortfall in services and facilities for CF.
Medical Issues
Transplants
There have been two lung transplants this year on Irish CF patients in Newcastle. There has been no transplant activity so far at the Mater this year. The meeting scheduled between patient groups, HSE and Mater transplant team did not take place due to the consultant’s dispute. We are still waiting for a new meeting date but due to summer holidays it is now only expected to take place in the autumn. A fact finding meeting to the Newcastle unit has been planned for 3rd July. David Fitzgerald and I will meet with Professor Dark and try and evaluate how we can improve upon the number of transplants being undertaken and the current status of the repatriation of the lung transplant programme.
In May 2007 the European Commission published a report entitled “Europeans and organ donation”. This summarised a survey of European countries views towards organ donation and the use of organ donor cards by European citizens. Ireland fell 1% below the European average of 41% when it came to discussing organ transplantation with other family members. Irish citizens scored 67% (European average 56%) when it came to their willingness to donate one of their organs after their death. The Irish are less willing (56%) to donate an organ from a deceased close family member. This is still 1% above the European average. 88% of Irish support the use of organ donation cards to make it easier it easier to identify people willing to donate organs after death.
St Vincent’s Hospital Update
No further meetings have been held between the Association and representatives of the hospital. The Association is very concerned with deteriorating conditions in the hospital. It was hoped that the interim refurbishment on St Camillus ward would have eased the pressures on St Paul’s ward. The HSE claim that the nurses’ dispute caused serious delays in the refurbishment programme plus the hospital has had a further outbreak of the vomiting bug that has put very severe pressure on the availability of beds. The Association and the medical staff are not going to tolerate any further delays and will put considerable pressure on elected representatives for immediate action to be taken.
Cork University Hospital
The third respiratory consultant, Dr Barry Plant has arrived in Cork and will take up his post towards the end of August. I have had one phone conversation with him and hope to arrange a meeting with him as soon as he is available. I also hope to attend a meeting of the Southern Region/ Build4Life Committee on the 5th July. It is vitally important that we get agreement from the local hospital management and HSE to progress with the upgrade of the adult CF unit at CUH.
HSE Working Group
There is still no date set for the publication of the findings of the HSE Working Group however a statement from the Minister’s office confirmed that she is expecting this to be soon.
National Conference
The 2008 National Congress will be held in Drogheda between 11-13th April 2008.
CF Worldwide & ECFS Conference 11-16th June
CFAI was represented at the above by Seamus Bohan, Caroline Heffernan, Grainne O’Malley and the CEO.
The first 2 days of meeting were with CF Worldwide and CF Europe. These two days of meetings are always very beneficial as it provides the opportunity to network and exchange ideas with leaders of other CF patient groups. CFAI were openly thanked for providing assistance to a CF patient that was caught up in the war in Lebanon without necessary drugs. Considerable emphasis is being placed in assisting developing countries build up local expertise in treating CF. CF is more widespread in developing countries than was originally thought and CFWW is building data on the world incidence of CF. The assistance that had been given to build up a CF centre in India is now starting to show results. CF Worldwide will continue to assist India and will have new projects starting in Brazil and Armenia. CF Europe operates out of the Belgian CF Association (who gives it administrative support) and CFE is now recognised as a charity in Germany. Bob Beall President of the CF Foundation spoke about the changing face of CF and that the quality of life for people with CF is improving along with the development of new drugs that will treat CF more effectively. The CF Foundation has built a dynamic pipeline of new drugs now under various stages of development. This pipeline can be viewed on their website at the following link http://www.cff.org/research/DrugDevelopmentPipeline/. The drugs under development include gene therapy, protein assist and repair drugs, drugs that will restore salt transport, drugs that will improve the mucus clearance, new anti inflammatory drugs, new antibiotics, and new nutritional supplements. $72m alone has been invested in screening chemical compounds that can open up chlorine channels. New antibiotics are under development with the expected release of a new antibiotic next year Aztreonam Lysine. Dr Preston Campbell from CFF commented that the annual lung function decrease is approximately 2% per year. With new therapies he expects the decline in lung function to slow to 1% per year allowing patients with CF to have an acceptable lung function at 60 years of age. If a therapy is discovered that replaces the functionality of the faulty CFTR then he expected it would be possible for a PWCF to maintain a health lung function. At the opening of the ECFS Conference medics were reminded that they were there for their patients. The opening ceremony included short film clips from various countries including Ireland where PWCF where asked to present what they expected from the medical profession.
Fundraising
Year to date cumulative income (to the end of May) stands as follows:
Branch Income € 163,824
Fundraising Income € 196,563
Other income € 75,957
Total YTD Income € 436,344
Recent Events
The Dunlaoire to Dingle Yacht Race was a very successful event and raised in excess of €35,000
Flora Women’s Mini Marathon
Number of participants was up on last year so we would hope that income from this event will be greater than last year.
Upcoming Events for July & August
Guinness Hurling Boot Camp TV3 11pm – for 8 weeks (3 weeks gone)
Carlie Redmond former GAA All Star and ex Dublin footballer participating in above event representing CFAI. Winner of competition by text voting gets €50,000 for their chosen charity .
KClub European Open
CFAI has been selected as co-beneficiary of the Putts For Charity Fundraising event (organised by Genworth Financial) that takes place as part of the Smurfit Kappa European Open golf tournament at the K Club between 5th and 8th July.
Tipperary Race Meeting 22nd July.
CFAI has been chosen as a co-beneficiary of this event.
Tour de Munster
A considerable amount of work is currently going into the organisation of the Tour de Munster 2007 Cycle Rally. The launch photoshoot has already taken place with Sean Kelly acting as a patron and participant in a number of the event stages. The rally takes place between 16th to 19th August and will pass through all the Munster counties. Collection points have been organised in key towns which the rally passes through. It is hoped that this event will raise in excess of €80,000.
Chicago Triathlon August 26th
A CFAI team of 17-18 participants will take part in the above event. This event should net between €35 -40,000.
Preparations have commenced for National Awareness week. Major shopping centres where mailed on 26th June requesting permission for collections. Letters have also been sent on same day to all branch Secretaries and Chairpersons.
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