Latest News

Latest News

Good News on Organ Donor Consent
Monday, 21 January 2019
  Good news on Organ Donor Consent  21 January 2019 The Irish Government has indicated its intention to bring forward to the Cabinet 'soft opt out' organ donor consent next month (February 2019) as part of the Human Tissue Bill. This is strongly welcomed by Cystic Fibrosis Ireland, which is part of 7 patient groups in the Irish Donor Network (IDN)...
CF Drugs Update: January 2019
Monday, 21 January 2019
CF Drugs Update: January 2019 Orkambi, Kalydeco and Smykevi: More Good News ORKAMBI Cystic Fibrosis Ireland welcomes the news that Orkambi has been approved by the EMA (European Medicines Agency) for children aged 2-5 years old with 2 copies of the F508del gene alteration.  Background:Orkambi was originally approved for reimbursement in Ireland for...
CFI welcomes Government approval of new CF drug Symkevi Cystic Fibrosis Ireland welcomes Irish Government approval of a new Cystic Fibrosis drug Symkevi. This is the third in a series of groundbreaking and innovative drugs for CF in Ireland. These are precision CFTR drugs that treat the underlying cause of CF and are aimed at particular CF gene...
Update on Beaumont In-Patient Unit
Friday, 07 December 2018
  Planning Permission Sought for CF in-patient unit in Beaumont Hospital Cystic Fibrosis Ireland are pleased to announce planning permission has been sought for a CF in-patient unit in Beaumont Hospital. This comes after a recent advocacy campaign by Cystic Fibrosis Ireland and CF Hopesource which called for Government to fulfil its programme for...
More inLatest News  

Cystic Fibrosis Ireland and Irish Donor Network Calls for Swift Passing of Legislation for Soft Opt-out Organ Donation

Date of issue: Monday September 17, 2018

As TDs get set to return from the summer recess, and RTE airs a documentary on Orla Tinsley’s transplant, the Irish Donor Network has today renewed its call on Government for the introduction of presumed consent organ donation legislation – also known as soft opt-out organ donation – to improve transplant rates in Ireland.

The call comes against a backdrop of most recent figures showing 600 people waiting for potentially life-changing organ transplants in Ireland in 2017. Ireland lies in 15th place out of 28 European Union countries when it comes to organ donation, despite very high levels of public support.

International evidence has confirmed the positive impact of opt-out consent on deceased organ donor rates. Over a three-year period, after making the change to an opt-out system, Belgium saw its rate of organ donation increase by 100 per cent. The recent experience in Wales with soft opt-out has also been very positive. The countries with the best rates of organ donation in Europe have some form of soft opt-out system, combined with sufficient infrastructure.

Philip Watt, Chief Executive, Cystic Fibrosis Ireland and Chair of the Irish Donor Network comments:
“The resumption of Dáil Éireann this Tuesday coincides with the broadcasting by RTÉ of a documentary on inspirational cystic fibrosis campaigner, Orla Tinsley, who underwent a double lung transplant in December of last year. The documentary once again brings into sharp focus the importance of organ transplantation and the transformation it makes to people’s lives.

“Introducing a soft opt-out organ donor consent system will undoubtedly save more lives and help to ensure our organ donor system is fit for the 21st century.

“Ireland is one of the last countries in Europe, along with Scotland, Northern Ireland and England, not to have presumed consent when it comes to organ donation. The number of people awaiting life-saving organ transplants in Ireland is more than double the operations carried out.

“Bringing in this new legislation will also bridge the gap between people’s intentions and their behaviour. 85 per cent of people in Ireland are willing to donate organs but only one-third of us carry an organ donor card and many of us do not inform our next of kin of our intentions to donate or otherwise.  

“Organ donation will always be a ‘gift of life’. With this proposed new system, next of kin will continue to be consulted so no family will be forced to donate the organs of a loved one should they not wish to do so. There will also be an online register for opting out of organ donation.

“IDN is today calling on public representatives of all persuasions to get behind this legislation and to ensure its swift passage through the Houses of the Oireachtas. It will prove an enduring legacy and one that will offer the prospect of a new lease of life for more of this country’s citizens than ever before.”

ENDS

For more information, Philip Watt, Chief Executive, Cystic Fibrosis Ireland and Chairperson Irish Donor Network, telephone.: 01 4962433 / 087 6370557 or email This email address is being protected from spambots. You need JavaScript enabled to view it.

------------------------

What is cystic fibrosis (CF)?
CF is Ireland’s most common life-threatening inherited disease. CF is a genetic disorder. It is not contagious, rather people are born with it. Approximately 1 in 19 people are carriers of the CF gene and when two carriers have a child there is a one in four chance of a child being born with it. CF affects the regulation of absorption and secretion of salt and water in various parts of the body including the lungs, sweat glands, pancreas, and gastrointestinal tracts. This defect inhibits the flow of salt and water through the body’s cells, causing a build-up of thick, sticky mucus, which can clog airways and harbour harmful bacteria. Symptoms reported by people with CF vary significantly in severity from mild to debilitating. The most common symptoms are recurrent chest infections, which result in lung damage, with the majority of deaths occurring through respiratory failure. There is a high prevalence of CF in Europe, with the highest prevalence in Ireland, which is almost three times the average rate in other EU countries and the United States.

About Cystic Fibrosis Ireland
Cystic Fibrosis Ireland, established by parents in 1963, is a leading national organisation dedicated to improving the quality of life of people with CF and their families across Ireland. It does this through providing information and education, advice and advocacy to people and their families, offering grant assistance, undertaking research, funding state-of-the-art dedicated CF health facilities and CF clinical staff, and advancing the development of lung transplantation in Ireland. Cystic Fibrosis Ireland comprises 19 branches and one regional branch and is overseen by a national executive committee, which includes representation from people with CF and their families. For more, visit www.cfireland.ie.

About the Irish Donor Network (IDN)
The IDN represents the following patient groups

·       Alpha One (Antitrypsin) Foundation: The Alpha One Foundation was founded in 2001 to raise awareness, increase diagnosis, promote research and improve the treatment of Antitrypsin Deficiency (Alpha-1). www.alpha1.ie

·       Cystic Fibrosis Ireland (CFI): CFI was founded in 1963 to support people and families living with Cystic Fibrosis (CF). Many people with CF will need a double lung transplant because of the damage caused to lungs by CF. www.cfiireland.ie

·       Chronic Obstructive Pulmonary Disease Support Ireland (COPDSI): COPDSI provides support for people with COPD in Ireland. www.copd.ie

·       Cystinosis Ireland: Cystinosis is a rare, degenerative, inherited disease which frequently requires the need for kidney and sometimes other organ transplants. www.cystinosis.ie

·       The Irish Heart and Lung Transplant Association (IHLTA): The IHLTA is a voluntary organisation which includes heart, lung(s), heart and lung transplant recipients, family and supporters. www.ihlta.com

·       The Irish Lung Fibrosis Association (ILFA): The ILFA was set up in 2002 to support patients and families living with Idiopathic pulmonary fibrosis (IPF). www.ilfa.ie

·       The Pulmonary Hypertension Association Ireland: PHA Ireland was established in 2005 to raise the profile of Pulmonary Hypertension (PH) and to support patients who are diagnosed and living with this disease in Ireland. Persons with PH may require lifesaving lung and liver transplants.

 

Spectrum Newsletter

Please, enter your email address to subscribe to our Spectrum Newsletter