Ms Kitty O'Connor:

I welcome Professor Gerry McElvaney, respiratory consultant in Beaumont Hospital and chairman of the Alpha One Foundation.

I will give members an overview of the Alpha One Foundation, our involvement with the Irish Lung Health Alliance and the importance of that to us. Members might not have heard of alpha 1 previously. They might have commonly heard it described as hereditary emphysema. The disease, whose full name is alpha 1-antitrypsin deficiency, is a genetic condition which can also cause liver disease.

The Alpha One Foundation was set up as a lung charity. It is based in Beaumont Hospital, which is the national referral centre for alpha 1. I realise members have been given a lot of statistics this morning but another one is that one in 25 people in Ireland are carriers for this condition. That makes it the second most common genetic lung condition in Ireland next to cystic fibrosis. Alpha 1 is the fourth most common cause of lung transplantation in the world. To put that in an Irish context, the first single lung transplant and the first double lung transplant in Ireland involved alpha 1 patients. The research we did recently shows that over 3,000 individuals on the island of Ireland suffer with a severe form but 200,000 individuals also have a deficiency, and they are also at risk of lung disease if they smoke.

A national targeted detection programme was established to test people with chronic obstructive pulmonary disease, which members might know as COPD, along with poorly controlled asthmatics, those with unexplainable liver disease and first-degree relatives of people with alpha 1. Early detection of alpha 1 is vital, and it gives us a real example of the way personalised medicine in this age can yield improvements in quality of life, life expectancy, and smoking cessation. To date in our programme we have screened more than 10,000 individuals, 300 of whom had a severe deficiency and 2,000 of whom had a milder form. Twenty-six hospitals participate in that programme and we believe it is vital for the maintenance of this target detection programme.

In terms of how we became involved with the Irish Lung Health Alliance, wedecided that we wanted to highlight lung health in Ireland and joined up with other patient support groups and health professionals. There were 12 of us in total, giving us a unique partnership with all of the key stakeholders in lung health. Its key messages are the same as ours: early diagnosis, early intervention, and increased awareness of lung health. We found we have benefited from involvement in and membership of this group. Members might have read about the Love your Lungs campaign last year when we had Dr. Ronnie Delany supporting our cause. That was aimed at highlighting that lung disease can affect people in all socioeconomic groups, non-smokers as well as smokers. We encouraged people who had symptoms of coughing, wheezing and shortness of breath to get a simple free lung test. In the same way someone can get a blood pressure measurement done, one can get a simple lung test done to see if any lung disease is present. As Dr. McKone stated, that campaign highlighted that lung disease is highly prevalent and under-diagnosed in Ireland. The Irish Lung Health Alliance wants to involve all stakeholders in lung health and gives a voice to hundreds of thousands of patients suffering with lung disease. Our main aim this morning is to highlight that we would like to be the contact for the Government in efforts to raise awareness of lung health and its importance in formulating future lung health policies. I thank the members for their time.