News & Upcoming Events

Would You Like To Become More Involved With ILFA?

Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA branch where you live.

You can decide what level of involvement you would like to have. If you are interested in getting more involved ILFA would like to hear from you.

You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ info@ilfa.ie or via phone @ 086 8715264.

Welcome to the ILFA website

The IRISH LUNG FIBROSIS ASSOCIATION was founded in 2002.

Urgent! Call to Action!

Dear friends,

The ILFA is asking you, your family, friends and colleagues to read the enclosed statement and call to, telephone, email or write to your local TDs to express your anger and frustration that the National Centre for Pharmacoeconomics (NCPE) has refused to recommend funding for Pirfenidone.

Pirfenidone is the only drug shown to be effective for the treatment of Idiopathic Pulmonary Fibrosis. This decision is devastating for all Lung Fibrosis patients and their loved ones. The ILFA need you to help spread the word, raise awareness of this issue and to fight to ensure the decision is reversed.

If you can, it is best to talk to your local TDs personally about this. It is important that they see what the effect of preventing people getting this drug will be. If you are not able to do so, you can email or write to them. You can also show them or send them the enclosed ILFA statement if you wish.

When you contact or write to your TDs tell them why you are upset and what you want them to do. We want to get the Minister for Health to reverse the decision of the NCPE. He did it for Cystic Fibrosis patients when their drug was refused so he should be able to do it for IPF patients. Your TD could also ask a parliamentary question in the Dail about the NCPE decision on Pirfenidone. Ask your politician to act on your behalf and raise the issue.

If you are writing to the TDs in your area, a short and simple letter with a clear message is good. Give your name, address and explain why you are contacting them. Include the ILFA Statement with your letter if you wish.

Write to all the TD in your area, no matter which political party they belong to. You do not need a stamp for TD correspondence sent to Leinster House. Use the word “Freepost” on the envelope.

Thank you

ILFA Committee

Statement from the ILFA

The Irish Lung Fibrosis Association (ILFA) is disappointed, greatly saddened and dissatisfied that the National Centre for Pharmacoeconomics (NCPE) has announced that Pirfenidone will not be made available for patients with Idiopathic Pulmonary Fibrosis (IPF) based on economic grounds.

Facts about IPF and Pirfenidone

IPF is a rare, chronic, progressive and debilitating disease which involves the development of scar tissue (fibrosis) in the lungs.
Fibrosis causes the lungs to become stiff and this prevents the effective transfer of oxygen from the blood to the lungs.
Patients develop breathlessness, fatigue, cough and ultimately respiratory failure. IPF patients often require oxygen 24 hours a day to help them breathe.
There are currently no drug treatments available to cure IPF.
Pirfenidone is an anti-fibrotic medication that slows down the progression of IPF in patients with mild to moderate disease. It works by interrupting the production of cells and molecules involved in formation of scar tissue in the lungs.
The development of Pirfenidone is recognised as a major advancement for the treatment of IPF and was welcomed by healthcare professionals and patients world-wide.
Pirfenidone was approved in February 2011, by the European Medicines Agency as the first licensed treatment for IPF.
On March 21^st the National Institute for Health and Clinical Excellence (NICE) in England and Wales approved funding for Pirfenidone for Idiopathic Pulmonary Fibrosis (IPF).
The Irish Thoracic Society recommends that IPF patients with mild to moderate IPF should be offered treatment with Pirfenidone. The Position Statement for the Management of IPF from the Irish Thoracic Society can be found on the ILFA website (www.ilfa.ie).

The NCPE stated that “In view of the high drug acquisition cost, the significant budget impact, the absence of long term clinical data and the fact that the product is not cost effective we cannot recommend reimbursement of Pirfenidone at the submitted price of €32,700 per patient per year. A mechanism such as a performance based risk sharing scheme and/or a significant reduction in price could facilitate access to Pirfenidone for patients with IPF.”

The ILFA is alarmed that the NPCE decision will impact hugely on IPF patients who are already struggling to come to terms with their diagnosis. The ILFA recognises that the cost of drug development and production is high (as with all new medications) and long term clinical data are yet to be established given the recent availability of Pirfenidone to respiratory clinicians. The news that the only drug treatment option available to those facing a debilitating illness will be withheld on financial grounds is simply devastating. The ILFA implore the NCPE and the HSE to urgently review the grounds for this decision and to actively engage with the drug manufacturers to make Pirfenidone available to IPF patients in Ireland.

Please click here to download a copy of the ILFA statement in response to the NCPE decision.

Please click here to read The Position Statement from the Irish Thoracic Society on the treatment of IPF.

Research

We promote and fund research into new and more effective treatments for Lung Fibrosis.

Education

We are working to increase public awareness about Lung Fibrosis and to educate healthcare professionals about the needs of patients who have this condition.

Support

Patients diagnosed with Lung Fibrosis face many challenges and ILFA supports those affected by providing information about the condition and the services available to them, their carers and their families.

News and Events

Please click here to visit our News and Events section.

Please click here to visit our Facebook page.

ILFA Pamphlets

Click on the title to download or contact ILFA to request a copy of the pamphlets by post.

1) What is Pulmonary Fibrosis?

2) Weight Management and Nutrition for Pulmonary Fibrosis

3) ILFA Join us! Get involved!

4) The ILFA 2000 Steps a Day Challenge

Point of Contact

ILFA's point of contact for patients and their families is LORNA MURPHY, a Lung Fibrosis Nurse Specialist attached to Professor Jim Egan's team in the Mater Hospital in Dublin.

Lorna can provide support and advice on all aspects of the illness and she is available to talk to all patients.

Lorna also assists with the on-going research that is being undertaken into new and more effective treatments for Lung Fibrosis. Lorna can be contacted at 01-7166391 or at 086 871 5264.

Patient Groups

Midland Patient Group

A group of patients with Lung Fibrosis will meet on the the first Wednesday of every month at 2.30pm in the lobby of the Tullamore Court Hotel, Tullamore, Co. Offaly. All are welcome.

Please call Tom (086 150 0970), Mary (086 160 2482) or Anthony (087 258 5699), or email amarnell@me.com for more details.

Cork Patient Group

A group of people who have Lung Fibrosis hold an informal meeting at 11.00am on the last Thursday of every month in Restaurant/Bar of The Elm Tree in Glounthaune. Transport can be arranged if necessary.

If you are interested in going along contact Dave Mulcahy at 087 2865297 or email dave.mulcahy03@gmail.com or Pat and Anne Casey at 087 2835320 / 087 9854587 or email annecasey@live.ie

Dublin Patient Group

A group of patients with Lung Fibrosis will meet on the first Tuesday of every month. The group will meet at 11am in the Carmelite Community Centre at Whitefriar Street Church, Aungier Street (South George's Street), Dublin 2.

All are welcome. Please contact Pauline for more information. Tel: 087 6851837

Kerry Patient Group

A group of patients with Lung Fibrosis will meet on the last Saturday of every month @3pm in Tralee at the Carlton Hotel. All are welcome.

Please email Adrian Murphy adrianess@eircom.net or call 087 2414004 or Michael Horan at 087 1336406 for more details.

We hope you find our website useful.

If you need further information or if you have any comments regarding our website we would love to hear from you.

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