Research Education Support
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 @ email@example.com or by calling 086 871 5264
The Irish Lung Fibrosis Association (ILFA) welcomes the public consultation on the review of the medical card scheme announced by the HSE and the Minister for Health, Dr James Reilly. ILFA is a registered voluntary charity that was set up in 2002 to provide a source of free information and support to those diagnosed with lung fibrosis. ILFA relies solely on the fundraising efforts of our members and supporters. We implore the expert panel overseeing the review to recognise lung fibrosis as a medical condition eligible for inclusion on the medical card scheme based on the medical and care needs of those diagnosed with this terminal condition.
In addition to the review of medical card eligibility, we encourage the panel to recommend a full review of the Long Term Illness Scheme, and the conditions included there and for IPF to be added to their number.
What is IPF? Idiopathic Pulmonary Fibrosis (IPF) is a rare, complex, progressive, debilitating and ultimately fatal lung disease of unknown cause which typically occurs in older people. It has a worse prognosis than many cancers. Patients’ life expectancy is severely curtailed with an average survival of 3 years from the time of diagnosis. There are approximately 800 IPF patients in Ireland. With IPF, the lung tissue becomes irreversibly damaged and hardened with scar tissue (fibrosis) over a relatively short time period. The course of disease progression is highly unpredictable and some patients can deteriorate rapidly. Treatment options for IPF are limited; lung transplantation is the only viable option but this procedure is only available to a very small number of patients. Pirfenidone is the only licensed drug to slow down the progression of IPF in patients with mild to moderate IPF. There is no treatment available for patients with advanced or severe IPF.
The formation of scar tissue in the lung means that patients cannot utilise oxygen efficiently putting their lungs, heart and body under enormous stress as they struggle to breathe and carry on with activities of daily living. The medical, psychological, emotional and financial impact of a diagnosis of IPF for individuals and their family is devastating. As the disease progresses, patients develop increasing breathlessness, debilitating cough, chronic fatigue, reduced mobility, muscle weakness, muscle wasting, weight loss and respiratory failure. Patients diagnosed with IPF have to stop working as their disease advances as they are no longer be able to breathe, mobilise or function properly. The prospect of income loss and increased dependency on their families places patients under a huge financial and emotional burden.
What is the impact of IPF?
As IPF is a progressive disease, patients will face increasing medical and palliative care needs in a relatively short time. Patients are at increased risk for respiratory infections and are likely to need frequent GP visits and hospitalisation to manage their condition. Patients eventually need to be prescribed high dose 24-hour oxygen to alleviate their extreme breathlessness in order to breathe and survive. The costs of prescription oxygen and the associated electricity costs to run the medical equipment are substantial. In recent years the electricity costs to run life-preserving medical equipment have been steadily increasing and there is no rebate or reduction available for those on life-support. Patients often pay in excess of €400 every 2 months for electricity to run oxygen concentrators and such costs are unmanageable. Additional financial costs encountered by IPF patients include:
Home heating costs (patients are more susceptible to the cold)
Additional clothing costs
Costs for home modifications e.g. adaptations and building work (widened door access, home extensions), installation of stair lifts, grab rails, ramps, bathroom and kitchen modifications
Equipment costs e.g. renting oxygen machines, purchasing a wheelchair, home exercise bicycle to maintain leg and respiratory muscles, bed hoists, commode.
Travel costs for ongoing medical appointments, especially for those who need to travel long distances to access the specialist IPF centres
Prescription medication costs
Prescription devices e.g. nebuliser
Accessing services e.g. home help services, meals on wheels, pulmonary rehabilitation, counselling
Day to day living expenses
What needs to be done? IPF patients are faced with huge financial hardship and should be entitled to a medical card based on their complex and progressive medical and care needs. There is a moral and ethical obligation on the state to support those diagnosed with such a severe and unrelenting respiratory condition for which there is no cure. The financial burden imposed by treating and managing this condition creates additional stress, physical and emotional, for the patient. In many cases patients are left for months attempting to recoup costs which are incurred solely to save their lives.
The Irish Lung Fibrosis Association requests the opportunity to meet with and discuss further the importance of the Expert Panel recommending that IPF patients be given automatic access to a medical card.
For further information, please contact Denise Dunne, ILFA, telephone 086 871 5264 or email, firstname.lastname@example.org.