Mr. Philip Watt:

I thank the public representatives for attending after a very long night. I very much appreciate their being present. I also thank Senator Crown for facilitating today’s meeting. I welcome Caroline Heffernan, a patient advocate who has cystic fibrosis.

Cystic fibrosis, CF, is an inherited chronic disease that primarily affects the lungs and digestive system of approximately 1,200 children and adults in the country. A defective gene causes an unusually thick and sticky mucus to build up that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. Our association is the only national patient CF group in Ireland. We were formed in 1963 and this year is our 50th birthday, which is a fantastic achievement. Along with the Irish Cancer Society we are the oldest patient group formed in Ireland.

In the 1950s, few children with cystic fibrosis lived to attend primary school. Today, thanks to advances in research and medical treatments and the fantastic clinicians we have children and adults with CF enjoy an extended life. However, the disease remains challenging. The median age of death is still around 25 years of age, but thanks to the good care standards in hospitals, people with CF can now expect to live into their 30s and beyond. Increasingly, some of our members are attending third level colleges, accessing employment and living more independent lives, with the support of family. However, this also puts major demands on adult CF services in particular. There is a particular deficit of adult CF services and also of children’s services. This country has some of the most severe manifestations of cystic fibrosis in the world and also has the highest incidence of CF in the world, with three times the rate of the United States and the rest of the European Union.

We wish to draw some key points to the attention of the committee. We acknowledge the recent improvements in CF care in recent times, but we are still catching up with accepted standards in the United States and other parts of Europe. The recent approval of the ground-breaking drug Kalydeco and the introduction of newborn screening for CF in 2011 and the opening of the long-awaited unit in St. Vincent’s Hospital are some examples of positive developments. However, huge challenges remain. Isolation facilities are still needed around the country. There is an urgent need for 13 adult inpatient isolation rooms in Beaumont Hospital. There are only four isolation rooms at present for approximately 130 adult patients attending the hospital in Beaumont. It is estimated that the cost of the project is relatively modest at €2.5 million for capital costs alone. The indication is that association will have to collect the money for the project through our fund-raising, which is not entirely fair on patients and their parents who have many other demands in terms of managing the disease. There are major infrastructure deficits in many other CF centres which I have listed in the presentation.

There is need for an increased rate in double-lung transplantation. We are delighted to hear that this week three such transplantations were undertaken in the Mater Hospital. However, we must double the current rate of transplants. Such operations are necessary at the end of people’s lives and it can make a major difference in terms of the extension and quality of people’s lives. We acknowledge the fantastic quality of the transplantation that is undertaken but urge that more such operations would take place.

We also wish to draw the committee’s attention to the non-replacement or significant delays in the replacement of dieticians, specialised nurses and physiotherapists which affect all the groups represented at the committee today. Those on maternity and sick leave are not being replaced.

That is causing real hardship for many of our patients.

Annual assessments in some of our hospitals, which are vital for people's health, are being cancelled or deferred because of staff embargoes.

We also object to the recent increase in prescription charges for medical card holders of 50 cent per item up to a monthly limit of €19.50 per family. That is causing significant hardship for our patients, particularly in terms of the number of medications they must take every month.

We must also preserve research funding into new and innovative treatments, as the recently approved drug Kalydeco shows. We urge that the funding for schemes such as that operated by the Health Research Board, HRB, and the Medical Research Charities Group is maintained.

On the point Dr. McKone made at the start of the presentation about the need for lung health in general to become a much more important public health priority than it is currently, that is consistent from all the messages we heard here today. It must be given a much greater priority. Also, practical initiatives such as greater emphasis on flu jabs and the need for vaccination for pneumonia, which is very important for vulnerable groups but does not get much publicity, are vital. We call for a partnership approach with non-governmental organisations working with clinicians through the Lung Health Alliance and the State as an effective way of going forward.