Ms Eibhlin Mulroe:

I thank Professor Hennessy and the Chairman. It is great to be here today.

The implementation of the national cancer strategy could take us significantly closer to achieving more options for cancer patients. To date we have been enabled through funding received from the Irish Cancer Society, which contributes €485,000 annually and the Health Research Board, which contributes €3 million per year. Some €2 million of this funding is distributed among our 11 cancer units in our hospital sites. This funding employs people to work on clinical trials. In 2006, the figure for hospital sites was €3.8 million or almost half. We also receive kind support from the St. Luke’s cancer research fund, which is €165,000 per year. The other half our income is generated through sponsoring our own investigator initiated studies. They are our trials, we run them and we come up with the ideas but they are funded by pharmaceutical companies and working with international groups like ours to bring international trials to Ireland.

Patient involvement is key for us. Cancer Trials Ireland makes a direct impact on Irish patient lives and it is important for the committee to reflect on that. In our submission on 6 March, we included true-life stories of people and their experience. There are many stories of people who have lived longer and with improved quality of life because of their participation on a clinical trial. They have been there for family, major life events and, most importantly, for their children and grandchildren.

There are many misconceptions concerning participation on clinical trials and we try to stimulate public conversations about trials through our Just Ask Your Doctor campaign. We are humbled that so many patients are willing to advocate for cancer trials on our behalf. We have established a patient consultant’s committee, some members of which are with us here today. We are very appreciative of that. Patient involvement in the decisions we make and the research we do is of strategic importance to our organisation.

Our challenge, as outlined by Professor Hennessy, is that we can report little movement on the implementation of the research KPIs. Due to our reduced funding, we have had to decline opening clinically important academic trials and people with a range of cancers, including lymphoma, testicular and endometrial cancer, have lost out. We are unable to be proactive in exploring opportunities to open new trials in areas such as pancreatic, lung, testicular and cervical cancer. This is as a direct result of reduced funding.

The work at our office and at hospital sites is highly specialised and subject to a detailed quality management system with over 50 standard operating procedures, SOPs, designed by us, and is frequently inspected by the HPRA. Patients in Ireland on clinical trials can take comfort in the knowledge that their welfare is monitored at the highest level in healthcare. However, it costs to do more and to maintain quality standards. Therefore, we need increased funding from the Department of Health through the Health Research Board and a budget commitment for the NCCP for research at our hospital cancer units and head office.

The medium-term objective of Cancer Trials Ireland, CTI, is to test and prove treatments that kill cancer and stop it in its tracks. One important difference between cancer trials and all other cancer research is that clinical trials have a profound impact on the lives of people with cancer today. Trials deliver in the medium and immediate term. Today our trials are providing patients with access to proven but not yet available treatments that can save their lives. There are people on trials today who would not be alive if they did not have access to one of our trials.

It is really important for decision makers to understand that when the funding for trials is reduced, life-saving treatments for patients today can be removed. Their options are reduced. Is this a wise approach? We believe not.

We would like to take this opportunity to thank the 15,000 Irish patients who have volunteered on our trials over the past 20 years. They have made a difference for future generations of cancer patients.