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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.

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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.

 

CFI Invites Your Participation in the Science of CF Survey

Cystic Fibrosis (CF), is a complex and multi-organ condition which primarily affects the respiratory and digestive systems. Other medical issues include, CF-related diabetes, malnutrition, liver diseases and subfertility issues, particularly in males, as well as chronic lung infection.

Because of this, health literacy is extremely important for people with CF, their family and friends. People with CF want to learn more about their condition and are actively seeking information on new treatments in development which may ultimately and significantly improve their health outcomes.

The challenge for healthcare professionals and scientists is finding out what people with CF want to know about their condition and how best to communicate that information in a manner that is both accessible and reliable.

In an effort to address that challenge, the Northern Ireland Microbiology Discussion Group (NIMDG) (not-for-profit) has launched a survey. The survey consists of 40 questions covering everything from your cross-infection concerns to what you consider to be your most reliable sources of CF information.

CFI invites your participation in this survey which has already taken off with over 200 completed surveys worldwide from Ireland, Northern Ireland, South Africa, Brazil, Israel, Canada and the USA. The survey is voluntary and completely anonymous and takes only 15-20 minutes to complete. It will run to the end of 2018 and the outcomes of survey will be available at the following website.

NIMDG has a strong base within CF and over the past two decades, several healthcare professional members of the Group have developed important links with the CF community through research and healthcare delivery.

The survey has been developed in conjunction with Cystic Fibrosis Australia, Cystic Fibrosis Canada/Fibrose Kystique Canada, Cystic Fibrosis Foundation (USA), Cystic Fibrosis Ireland and the Cystic Fibrosis Trust (UK).


Happy 26th (Transplant) Anniversary to Brendan McLoughlin from Ballybofey, County Donegal. The longest living CF lung transplant recipient in Ireland.

Brendan Mcloughlin (PWCF) celebrates the 26th anniversary of his lung transplant on the 11th of August 2018. Brendan is currently in the very good care of the Mater Hospital in Dublin. He was originally transplanted in Newcastle, England on the 11th of August, 1992.

Brendan was given a single lung transplant in 1992, which is still quite unusual for patients with CF. Brendan recalls ‘they took two lungs out and put one back!’. He remembers ‘before the operation I was gasping, struggling for health.. I couldn’t lie flat- there had to be six pillows supporting me. Afterwards everything had completely changed. It was like a new life’ 

The transplant was very successful and until the last year or so, Brendan was living independently. 

Brendan also needed a kidney transplant which was successfully performed in Dublin in 2002. Brendan is one of the longest surviving lung transplant recipients in the world. The world record for a single lung transplant is held by an Irish great grandmother, Vera Dwyer who has a different condition (Fibrosing alveolitis) and was transplanted in the UK in 1988. In 2017, Vera was verified by the Guinness book of records as the the longest living single lung transplant recipient in the world (29 years).

Brendan has long campaigned for the rights of people with disabilities and in recognition of his work, earlier this year Philip Watt, CEO of CFI presented Brendan with a copy of an Irish Time article from 1992 that featured his lung transplant.

On behalf of all of us in CFI, we wish our friend Brendan happy anniversary!