Cystic fibrosis report - Strides made in CF services

It is all too easy to despair of our health service. There are so many problems with it that it is often seen as an impossible task to make real improvements.

Yet, progress in three areas shows that sustained investment and commitment to research and development can make a major difference.

A new report has shown major improvements in the quality and length of lives of people in Ireland living with cystic fibrosis.

The report from Cystic Fibrosis Ireland, Independent Living and Cystic Fibrosis, reveals the huge strides that have been made in the past two decades. Most people with the condition are now in employment and lead independent lives.

More people with cystic fibrosis are gaining third-level qualifications, are married, having children, and – most importantly - living much longer.

This is in contrast to the situation that pertained in 1998 when those with CF faced a dismal future.

Similarly, the lives of people with kidney disease have been transformed in a few short decades. Through organ transplants and dialysis services, Ireland has made huge strides in the diagnosis and outcomes for patients with organ failure.

That is, of course, thanks to advances in medical treatment but a lot of credit goes to the efforts of the Irish Kidney

Association which celebrates 40 years of advocacy this week. When the association was founded there were just three dialysis centres here. There are now 23 centres nationwide.

Even people with potentially fatal illnesses are experiencing new hope. According to the Irish Cancer Society, every year 40,000 people in Ireland will hear the dreaded words, “you have cancer”.

Thanks mostly to research and new treatments, cancer is no longer a death sentence and six out of 10 patients will

survive the disease for at least five years.

Survival rates are improving and patients are living full lives with cancer and living for longer, thanks to research and advances in detection and treatment. As the society puts it, “more than 165,000 people are living with and beyond cancer in Ireland”.

The society is the leading voluntary funder of cancer research in Ireland and has invested €20m in research projects and initiatives since 2010.

None of this would have been possible without the generosity of the public.

Every individual can make a difference. One such person was writer Emma Hannigan, who raised over €126,000 for cancer research and Breast Cancer Ireland before her untimely death last month. A research fellowship is now to be formed in her honour.

Another is Moira O’Brian who, 40 years ago, donated one of her kidneys to her daughter, Edel.

It was big news in 1978, so much so that Edel, who was just nine years old, received a visit from the then president, Patrick Hillery.

Improvements in Ireland’s health service is too important to be left solely to the HSE or the Department of Health. Public involvement by way of financial contribution, organ donation, or advocacy is essential.