Editorial Note: I have posted Owen’s commentary unedited. He is entitled to position his charity as he sees fit. I will not be accepting any comments on this post from readers as I consider this to be a matter of achieving a balanced record.
The Kids Cancer Project was founded by Col Reynolds in 1993. Col became involved with children with cancer when he stopped his bus outside the Westmead Hospital when it was located in Camperdown. Since that day the charity has committed over $27,000,000 to childhood cancer research. This is a remarkable achievement that continues to grow and provide hope for families.
Our relationship with Westmead Hospital and The University of New South Wales that has been challenged was established in 1993 when the charity began. Despite initially funding trips and experiences for children undergoing treatment of cancer it was one clinician at Westmead Hospital that convinced Col Reynolds that it would be through research that he would really make a difference and that relationship continues today.
There are many charities that fund individual institutions and although we have a strong history with these institutions as a national charity we are guided and driven by the needs of families.
We believe our strength moving forward is that we are not aligned to any one institution and have the ability to spread our investment nationally. We are currently funding programs in four states of Australia and this will only increase as we continue to strive to make our donor dollar go further as we support collaborative research that has the greatest chance of clinical success.
Despite tougher economic conditions we continue to increase our investment in childhood cancer research and as our relationship with researchers and clinicians is improving we will continue to spread our growing annual investment into research. This financial year we have committed to increase our funding into childhood cancer research to over $4.2 million – this is despite a decline in revenue last year.
We are very proud of our relationships and ability to see research translated into the clinic. Anasina will be one of the Kids’ Cancer Projects four phase 1 clinical trials we are currently supporting.
We are always trying to improve our governance and transparency. I look at the continued improvement since the Research Advisory Committee was established in 2008. I think as suggested we are not perfect we are heading in the right direction. As a charity many of these roles are voluntary and I believe we have a committed board and staff, we continue to improve our very rigorous research governance with an international esteemed panel on our Research Advisory Committee, a research committee at a board level and an internal research manager.
Below are some of the challenges that the Kids Cancer Project faces in getting translation of research to the clinic.
• The pharmaceutical industry internationally does not consider the development on new drug therapies economic for childhood cancer because of small numbers globally and a poor return on investment.
• Depending on the country, often there can be a 7 to 10 year delay into advancement of treatments in adult cancer types to be tested in children.
• The Kids’ Cancer Project wishes to expedite the testing of the application of new cancer drugs for the treatment of childhood cancer.
• The Kids’ Cancer Project is currently working with Novogen to expedite childhood cancer trials for Anisina. (The terms of how this proceeds will be acceptable to our supporters and Novogen’s shareholders.)
• The Kids’ Cancer Project only support research which directly relates to childhood cancer.
Like Christian, we are also advocate for new models for development of healthcare technologies that more effectively bridge the private/public and for-profit/non-profit divide. We will continue to partner with families, government, organisations, clinicians, researchers and the community so we can continue to improve the outcomes for kids and their families.
Unfortunately as a charity we are resource poor and have to prioritise where we are investing our time and effort. I apologise for our lack of website information and we will be launching a new website in early October. Any lack of details on our current website has more to do with the time that we have been investing on our new website.
I was very fortunate to get a strong understanding of the history of our organisation, the funding and rational behind what the Kids’ Cancer Project has historically funded and continues to fund early on in my role. In my first week I attended one of our three research governance tools; our annual Research Advisory Committee meeting. This meeting was not as simple as sitting on the charity’s medical advisory board and redirecting funding to your own institution. There was spirited discussion across the funded research projects and in some cases where there was a conflict of interest committee members excused themselves.
While some of the discussion is pertinent and we will take them on board I also believe, that regrettably, some of the people named in the article have had their characters challenged. In my new role as CEO I am aware of the important role I play in ensuring the investment that the community donates to the Kids’ Cancer Project is spent wisely. I thank you for your feedback as we continue to mature and increase our commitment to childhood cancer research investment.