Madam, – The Irish Heart and Lung Transplant Association, The Irish Lung Fibrosis Association and the Alpha One Foundation wish to respond to Orla Tinsley’s article (Opinion, April 24th). 

Our group has admired her informed and tenacious advocacy on behalf on the Cystic Fibrosis Association in relation to the care and conditions for CF patients in Ireland; however we would like to draw your attention to the work and advocacy of other groups concerned with cardiothoracic transplant issues which have been ongoing for a number of years.

Our group met Minister for Health Mary Harney, her officials and a representative of the HSE on April 21st to discuss and express our grave concern at the current low levels of heart and lung transplant activity in the Mater Hospital. We had a very satisfactory meeting and were encouraged by the Minister’s personal commitment and desire to improve the situation.

In 2001 the Irish Heart and Lung Association wrote to the then Minister for Health, urging the establishment of a formal transplant authority which would be responsible for all aspects of organ donation, procurement and transplant, donor awareness, education, training, registries and allocations. We are now encouraged by Ms Harney’s assurance that such a body is being established in the form of an oversight and regulatory office.

Our group obviously wish to see more transplant activity in the Mater Hospital but we are aware that cardiothoracic organs are not as robust as other organs, resulting in retrieved organs not always been suitable for transplantation. That is a situation common to all transplant programmes world wide. As far as prioritising patients on waiting lists, it is our understanding that this is a clinical decision based on a number of variables such as blood and size matching and of course which patient is most in need.

The Cystic Fibrosis Association is aware that there are other pulmonary patient groups whose members desperately need lung transplantation. Patients who suffer from lung fibrosis, Alpha 1 anti-trypsin deficiency, emphysema or other serious lung disorders all wait for that very special and scarce donation that will release many from the imprisonment of 24-hour oxygen dependency.

We particularly asked the Minister and the HSE at our meeting to examine donor management systems to ensure that they are friendly to the needs of cardiothoracic organ retrieval, and to examine the notification, retrieval and subsequent usage results. We understand that an external review of these and other issues will be undertaken.

As Mater Hospital transplant recipients we are naturally supportive of the National Heart and Lung Transplant Programme in that hospital, however ours is not a blind loyalty and if there are blockages in the retrieval/ notification chain then these must be addressed by both the Mater Hospital and the National Organ Procurement Service in Beaumont Hospital as a matter of urgency.

All of us within the transplant community in Ireland, both individually and through the Irish Donor Network, have worked hard over the years to convince the Government that our country has been left far behind by most of our European neighbours who many years ago implemented procedures, systems, organisational structures and resources (both human and financial) to ensure organ transplantation became a national priority and that donor and transplantation figures were maximised.

Our group will continue its work and will continue to liaise with our colleagues in the Irish Donor Network, the Department of Health and Children and the HSE to advance the interest of all patients on all transplant waiting lists. We believe this to be the best way to achieve our aims. – Yours, etc,

TERRY MANGAN, (Heart transplant recipient) 

European Heart and Lung Transplant Federation, 

Lansdowne Park, 

Templeogue, 

Dublin 16. 

BRENDAN GILLIGAN (Heart transplant recipient) 

Irish Heart and Lung Transplant Association. 

MARY O’CONNOR-BIRD (Lung transplant recipient) 

Irish Lung Fibrosis Association 

LARRY WARREN, 

CEO, Alpha One Foundation. 

This article appeared in the print edition of the Irish Times, Friday, May 1, 2009.

What is Alpha-1 Antitrypsin?
Alpha-1 antitrypsin is a vital protein produced by the liver to protect the lungs. It provides protection from the harmful effects of infections and inhaled irritants, particularly tobacco smoke. It can be easily measured by a simple blood test. 
What is Alpha-1 Antitrypsin Deficiency?
Alpha-1 antitrypsin deficiency (Alpha-1) is a genetic condition which, after cystic fibrosis, is the commonest genetic disorder in Ireland. It severely affects more than 15,000 people, with another 250,000 carriers also at risk of lung and liver disease on the island of Ireland. It is a proven genetic risk factor for chronic obstructive pulmonary disease (COPD).
How Do I Get Tested?
The Alpha One Foundation provides free testing for Alpha-1 as part of a national screening programme which is funded by the HSE. For more details ring 01-8093871 or email alpha1@rcsi.ie.