Finding cures for children's genetic diseases


CMRI’s Director Speaks about Medical Research Future Fund

CMRI’s Director Speaks about Medical Research Future Fund

Text from Presentation to Community Affairs Legislation Committee - 04/08/2015 - Medical Research Future Fund Bill 2015 Medical Research Future Fund (Consequential Amendments) Bill 2015.

CHAIR: Professor Reddel, would you like to make an opening statement? 

Prof. Reddel : Yes, thank you very much. As you have heard, I am the director of the Children's Medical Research Institute. The Children's Medical Research Institute was founded in 1958 by Australian citizens who met and decided that medical research was really the only answer to the diseases that were then causing death and disability in childhood. From that day onwards, we have enjoyed a really quite unique level of support and engagement by the community with fundraising committees in metropolitan, regional and rural areas. We are also supported throughout the nation through the Jeans for Genes campaign, which I am sure you have heard of, which originated 22 years ago and is now being copied in other countries. 

I am mentioning these things partly to identify the organisation I represent but also to really illustrate the very broad level of support that medical research has throughout the Australian community. I also cannot resist mentioning that it is Jeans for Genes day this Friday, 7 August. I am sure that senators will be wearing their very best denim to work that day. 

The Children's Medical Research Institute focuses on four main areas of research: cancer research; embryology and birth defects; nerve cell signalling, epilepsy and related diseases; and gene therapy—all of which address major areas of need in children's health. I have had the experience recently of talking with a mother and father whose three children all face the certainty of blindness from genetic disease in their teens. They are all about to gradually lose their eyesight. We have discovered the faulty gene that is causing this, and now our researchers are racing against the clock that is ticking down to blindness to come up with a treatment that could stop the disease progressing. At this stage, it is theoretically possible, but it has never been done before. The technical challenges are very large, and of course it will not be achieved without substantial funding. 

I think this is a very powerful anecdote illustrating the sorts of things that the Medical Research Future Fund can achieve and why it is important to so many people. I could go into a whole lot of detail as to why we believe that legislating for the MRFF would be a really tremendous legacy for this parliament to leave to the nation and would be happy to come back to this, but suffice it to say at this stage that I believe that we have really only begun to scratch the surface of what there is to know about the life sciences and that there are huge benefits to health that at this stage we may not even be able to imagine that can be realised with continuing research. 

I would make three recommendations. I should mention that the Children's Medical Research Institute did not put an independent submission to the Senate committee. We are members of the Association of Australian Medical Research Institutes and have taken a very close interest in the submission that was prepared by them and the other members of the MRFF action group. We are essentially in agreement with the submission that was made and wanted to avoid duplication and any source of confusion from too many submissions. 

One recommendation that CMRI would make is that we believe it is very important to avoid duplication with NHMRC processes. It is very important that decision making should be coordinated with the NHMRC where possible and that the NHMRC's decision-making processes are utilised wherever appropriate, and having the NHMRC's CEO on the decision-making panel is something that we strongly support. Secondly, we believe that it is very important that the decision should be transparent wherever possible, and I accept Mr Wilson's comment that sometimes there are commercial-in-confidence considerations, but in the absence of such things the decision should be published as soon as possible, should always be made on expert advice—and the most appropriate expert advice—and, if for some reason this does not occur, then an explanation should be published soon as practicable. Then, thirdly, in order for this to be a truly perpetual fund, we believe it is very important that its real value is maintained rather than its nominal value. 

These are the three recommendations that we would make. I am happy to talk to this or any other aspects. In conclusion, we are broadly, strongly supportive of the MRFF and believe that setting up a perpetual fund to support medical research is a really visionary step which will greatly benefit the nation. 

CHAIR: Thank you very much, Professor Reddel.