Ms Maureen O'Donnell:

I thank the Chairman and the members for this opportunity to be here today advocating on behalf of patients with lung fibrosis. With me today, I have Mr. Hurley, a lung fibrosis patient, and Mr. Macauley, whose family has been significantly impacted by lung fibrosis. We are also joined by Ms Cassidy, a board member of the Irish Lung Fibrosis Association, ILFA, who joined the association after her mother passed away from lung fibrosis in 2006. Since then Ms Cassidy has been working tirelessly with leading experts like Professor Hurley and Ms McCafferty to ensure that patients have the best chance at getting a timely diagnosis, accessing the best treatment, and maintaining their quality of life.

Lung fibrosis is a progressive, debilitating, terminal disease. It starts with a dry cough, shortness of breath and increasing fatigue. That is happening because the lungs are developing scar tissue or fibrosis. As the disease progresses, the lungs become more and more inflexible and patients increasingly struggle to breathe. Ultimately, they go into respiratory failure. There is no cure and the only hope is a lung transplant. The median life expectancy is three years.

We are here today to be the voice for lung fibrosis patients and their families and to highlight the inequities in the healthcare system. Gaining access to lung fibrosis care is a postcode lottery. If a person is lucky enough to be referred to a specialist centre, he or she will have specialist care and support that may improve life expectancy. If the person is not, however, then, Like Mr. Hurley, he or she might wait a year and a half to get a diagnosis. While the patient waits, the condition worsens. Thanks to his tenacity, Mr. Hurley's case was finally assessed at a specialist centre. He was properly diagnosed, put on the right therapies and given expert advice. As a result, his health has stabilised. Mr. Hurley is surviving the odds thanks to his self-advocacy. He is with us here today in order that others do not have to go through what he went through.

Another lung fibrosis patient who has survived the odds thanks to a lung transplant is Margaret, Mr. MacAuley’s sister. Margaret is in the Gallery. Mr. MacAuley is here with us today to tell the committee what it is like from the family’s perspective and how he cared for his father and has used his knowledge of fitness to support his family and the wider lung fibrosis community in their fight with this disease.

One patient advocate who is too sick to be here today was diagnosed eight years ago, and over that time she has been offered pulmonary rehabilitation just once. To maximise her health, she takes part in the ILFA’s exercise classes because there are literally no other options available to her. I put it to members of the committee that the inequity of this postcode lottery must stop.

We are here today to ask for the committee's help. It is within members' power to improve the lives of lung fibrosis patients across Ireland. A clinical care programme is our ultimate goal because it will, like nothing else can, ensure equity. We understand that this takes time and we acknowledge the steps recently taken by the HSE to develop a care pathway and a 0.2 full-time equivalent clinical advisor post.

As the HSE continues to do its work, committee members can help us build a more equitable system for lung fibrosis patients right now by supporting the following requests. First, we want patients to have access to pulmonary rehabilitation. We also want State funding for the ILFA and for patients. Currently, the ILFA receives no State funding. We require this funding to continue to operate and expand our programmes. We also want funding for patients. They are struggling with the high costs of medical care and utilities. In some cases, we have heard of electricity bills increasing by more than €500 per month as a result of people having to run oxygen equipment. Imagine having to ration your oxygen because you cannot afford to pay your utility bill. We are calling for a tax rebate system to be put in place similar to the one for home dialysis patients, and medical cards for all lung fibrosis patients regardless of age.

Our last funding request is for a fully resourced interstitial lung disease patient registry in order that we can finally know how many patients have this disease. At last week's meeting, Deputy Shortall said that we cannot manage what we cannot measure. How can we plan for lung fibrosis care and supports when we do not even know how many people have the disease?

In addition to funding, we are asking to streamline the oxygen provision system. Lung fibrosis patients are forced to navigate an inefficient and bureaucratic system that makes it a struggle to get the oxygen they need and once they have it has them waiting months for reimbursement. We are asking for a direct payment system to suppliers, cutting out the patient middleman. In summary, our asks are: access to pulmonary rehabilitation; funding for the ILFA's programmes and offsetting patient costs; streamlining the oxygen provision system; and our ultimate goal of establishing a clinical care programme for lung fibrosis patients.

By taking these actions members of the committee can put an end to the postcode lottery and ensure that patients get the care they need, regardless of whether they live in Dublin or Donegal or any other community across Ireland. I thank the members for their time. I will ask Mr. Hurley and then Mr. MacAuley to briefly speak on behalf of lung fibrosis patients and their families.