The demand for cystic fibrosis transplants will always greatly exceed supply, write Freddie Wood, James Egan, James McCarthy and Conor O’Kane
THE NEEDS of Irish cystic fibrosis (CF) patients have been publicly highlighted recently. The Heart-Lung Transplant Programme at the Mater hospital in Dublin has a common goal with all patients awaiting lung transplantation and supports the call by the cystic fibrosis community for increased numbers of patients to receive this treatment in Ireland.
For this to happen we must significantly increase the number of suitable lungs available for transplant and to do that we must learn from other European Union (EU) and Organisation for Economic Co-operation and Development (OECD) countries and make substantial changes to our organ transplantation structures, principally through the establishment of a national transplant office and related donor management policies.
Currently, 34 people are listed with the Mater for lung transplantation. Of these 13 patients suffer with cystic fibrosis, eight with pulmonary fibrosis, eight with emphysema and three with sarcoidosis. There are two more people that have other conditions outside of these main groupings. Five of the 13 CF patients have been declined lung transplants in Britain.
Everyone associated with the programme in the Mater is highly motivated for as many Irish people to be given the opportunity for their lives to be both enhanced and prolonged.
We are privileged to be able to play our part by using our collective skills to ensure that Irish people have access in their own country to life-saving procedures that have been available to citizens of other EU and OECD countries for many years.
The main medical conditions which lead to the need for lung transplant are cystic fibrosis, emphysema and idiopathic pulmonary fibrosis (IPF). International data indicates that emphysema patients are the most likely to be transplanted while pulmonary fibrosis patients have the highest mortality rates awaiting lung transplant.
Until 1999, all lung transplants performed on Irish people were undertaken in Britain on an ad hoc basis with an average of just one transplant each year and 22-24 people on the waiting list at any one time. To address this, then minister for health Brian Cowen commissioned the Heart-Lung Transplant Programme in 1997. To date 21 lung transplants have been performed with excellent outcomes for all recipients.
The programme at the Mater will continue to be supplemented by transplants for Irish patients at the Freeman Hospital in Newcastle, England, until the capacity of the Mater programme is enhanced. Because of the intention to sustain a link with Britain, a common misconception exists that CF patients can be on both the Irish waiting list and the UK list at the same time. This is not possible because such an arrangement may result in a subset of patients being treated more favourably.
The success and survival rates of the Mater programme has been comparable to the highest international standards since its inception and our patients are living healthier, prolonged lives than would otherwise have been possible. The next phase is to increase the number of transplants so that as many Irish people as possible can be safely transplanted. Since the first lung transplant in the Mater in 2005, an average of five people have benefited annually from this life-saving procedure over the four years. The goal is to reach between 10 and 15 lung transplants annually over the next few years.
However, even when we get to the stage of a fully-matured lung transplant programme, Ireland will share the frustration of the same primary limitation that bedevils even the most successful transplant countries. This is that human organs are very scarce and, unless the synthetic production of human organs is perfected, organ transplantation will always be limited by a shortage of supply relative to demand.
Regrettably, while significant improvements in transplant rates are possible across all organ classes over time, Ireland’s potential will always be rooted to the same reality – demand for human organs greatly exceeds supply. In addition, when suitable lungs become available their successful transplantation is one of the most difficult surgical procedures that can be undertaken.
It is a medical impossibility to accurately guarantee patients a perfectly functioning lung using present assessment methods. Indeed, if an error is made and an unsuitable lung is transplanted then the recipient will have a one in five chance of mortality. This is a high level of risk that could be reduced if certain changes were made to how organ transplantation is managed across the health system.
The high risk of mortality explains, to a considerable degree, the fact that since 2005, the Mater’s lung transplant team has prepared for transplants on no less than 66 occasions but has only conducted 21 transplantations. Failure to proceed was largely due to clinical concerns regarding the donated lungs when inspected.
The range of issues that need to be addressed to reach higher numbers of lung transplantations are highly complex. Firstly, Ireland is the only EU country which has an active lung transplant programme without the existence of a dedicated national transplant organisation. Such an organisation would be responsible for the complete range of issues related to successful and efficient organ transplantation.
Secondly, Ireland and Britain have one of the lowest lung utilisation rates (the number of transplants made from the number of lungs made available by donors) in Europe. Of the approximate 80 individual donors who die in Ireland each year in circumstances that allow for organ transplantation, the number of lungs that are actually utilised is low at just 12.5 per cent. Of the lungs we do utilise, some 60 per cent are used in the Mater and the remainder are sent to Britain. The pathway to transplant for Irish people on the list in Britain is fraught with additional complexity as there are growing concerns in Britain regarding the potential for non-nationals to compromise British citizens’ access to transplants in their own country.
A further issue is related to the fact the 80-plus organ donors come from some 35 hospitals across Ireland. In the absence of a specific transplant organisation it is highly challenging to implement donor care programmes to the level required for a successful outcome for the transplant recipient.
Organ care programmes in Canada and Australia have resulted in an increased quantity of the lungs made available for transplants. In the Canadian province of Ontario, such strategies have resulted in a radical increase of the number of lungs utilised from 15 per cent to 55 per cent over the last six to seven years. We, on the other hand, currently work in an environment for which there is no framework for improving the quantity of heart and lung organs for transplantation. This underscores the need for a national donor management policy as deployed by a national donor authority in keeping with best international practice.
Underpinning all this is the absence of a legislative framework for practitioners to work and improve activity. This issue is currently being addressed by emerging transplant legislation following the EU Tissue and Cells Directive (2004/23/EC). The European Working Time Directive (EWTD), which limits hours doctors can work, has far reaching implications for transplant activity in the UK and Ireland. For every one lung transplant undertaken the transplant team prepares on about three occasions. This involves significant time in setting up the donor harvesting and transplant operative reviews and admitting and preparing patients. To intensify retrieval activities, and address the impact of EWTD, additional senior staff will have to be deployed.
Since the National Heart-Lung Transplant Programme began in the Mater in 2002, it has supported the development of the National Pulmonary Hypertension Clinic, Mechanical Heart Bridge to Transplant, non-invasive ventilation, new therapies for pulmonary fibrosis patients, mechanical lung support, endoscopic volume reduction for emphysema and an ECMO/ECLS programme in Our Lady’s Children’s Hospital, Crumlin, and recently in the Mater itself.
In conclusion, the Mater hospital advocates that to meet the needs of all Irish patients awaiting lung transplantation, an increased quantity of donor lung organs needs to be achieved. We believe this can be best addressed by the deployment of a national transplant office responsible for organ care programmes and driven by senior medical staff. Given that there are 600 individuals awaiting organ transplantation in Ireland we urge all adults to consider carrying an organ donor card and to involve your family in your decision.
Freddie Wood is director of the National Heart-Lung Transplant Programme at the Mater Misericordiae University Hospital in Dublin; Prof James Egan is consultant respiratory physician at the Mater; James McCarthy is a cardio-thoracic surgeon there; and Prof Conor O’Kane is also attached to the hospital,
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