John Crown (Independent) | Oireachtas source

I welcome the motion because it is appropriate that attention be brought to bear on this sector. I also welcome the fact that the Government will pay some attention to the not-for-profit and charitable sectors, which are somewhat distinct.

I speak with a little authority on this issue and wish to give the House an opportunity to understand how a small idea can grow into something which not only meets its original intention but also has unintended spin-off benefits. I also wish to point out some of the potential pitfalls which I hope the Government will avoid in increasing its level of scrutiny of the charitable sector.

Back in the 1990s, it was brought to my attention that Ireland was the only country in the world that had not contributed patients to the major European and international cancer research network trials. Without giving the House a lecture on cancer research, many of the advances which have occurred in cancer research have happened because of co-operative trials. In such trials, groups of hospitals and investigators come together to ask and answer questions which require a large number of patients. The questions can be answered and trials then conducted in a single institution or, in some cases, in a single country. Some of the most important discoveries in cancer research, such as the fact that women did not need to lose their breast when they developed breast cancer, that lesser surgery plus radiotherapy could be effective, or that simple, old-style chemotherapy given to women after breast cancer or to men and women after bowel cancer would improve their chances of a cure were the result of large-scale clinical trials. In many cases, these trials took place through organisations that were set up as not-for-profit bodies. The United States of America, in particular, had a large number of such organisations and, with the passage of time, they developed closer relationships with the Government and achieved a degree of federal funding. That had its benefits but, in some cases, its drawbacks. One of the most outstanding cancer research programmes in the United States was led by Doctor Dennis Slamon, a recent visitor to our shores and someone who has been a great friend to Ireland for many years. He is a man whose research has probably saved more lives than that of any other cancer researcher in the world. All of his work took place in the context of charitable funding when he originally had great difficulty in raising Government funding for his work.

Armed with these facts, we set up the Irish Co-operative Oncology Research Group, ICORG, in 1997. All the oncologists in Ireland were involved, that is, all six of us. The joke used to be that we could have our AGM in a telephone kiosk. That organisation has grown and succeeded and now has substantial Government and philanthropic funding. It also generates a huge amount of funding from the pharmaceutical industry. The quality of the work done is such that companies have been more than willing to help to develop new drugs here. This has had the spin-off benefit of creating jobs within the group and making better treatments available to Irish patients. Another major collateral benefit is that many of the pharmaceutical companies in Ireland, which only had a sales force before or a few sales representatives giving out pens and samples to doctors, have now developed large, muscular, well-staffed research offices, which are well financed with international funding and which service the needs of clinical trials being conducted here.

The initial primary goal was to bring new treatments to Irish cancer patients and there are a number of such patients still alive today who were given early access to a drug for the treatment of chronic myeloid leukemia. That drug was not widely available for several years after it was developed but without it, those patients would have died. The early access facilitated by the existence of our group kept them alive. I am sorry for the naked self-promotion on behalf of my research colleagues but this was social entrepreneurship before we knew what that term meant. As a result of the formation of the group, there are approximately 120 people employed across the hospitals and in the central office of ICORG, co-ordinating the research. We estimate that between 100 and 200 additional jobs in industry in Ireland would not have existed before the group was set up. Most importantly, 7,000 Irish cancer patients, disproportionately women with breast cancer, have had access to new treatments, bringing in an estimated ¤40 million worth of free drugs into this country over the 15 years the group has been in existence.

There are many ways in which this activity can repay and not just from the actual social benefit it brings. I now come to my punchline. I ask the Minister of State and his colleagues to be careful. It is important that the sector be appropriately regulated because there have been international examples of charities that have run amok, and not behaved to the highest ethical standards and been beyond reproach. It really hurts the entire charity sector when that happens. There is a fine line between doing that and overregulating and stifling it. Great care will be needed in setting this up.

As someone who founded three charities and was one of the first to get them voluntarily in line with international guidelines, I think it is important to be able to say that what one does is beyond reproach. However, there have been examples - I will not go into them today - where the overreach of bureaucracy can sometimes stifle the development of vital initiatives.