CONSTITUENCY STATEMENTS
Ms BOELE (Bradfield) (16:05): During my time in office, I've had the heartbreaking privilege of meeting with Bradfield constituents to hear their stories of devastating loss and life changing diagnoses—in particular, Georgina, who told me of the loss of her beautiful daughter Vanessa to sudden cardiac arrest aged just 24; Nadine and David, whose daughter Sasha was diagnosed with a rare, recessive genetic condition at the age of four; and Lucy, who lost her young daughter to neuroblastoma.
These families inspired me with their hope, turning their personal devastation into purpose and action. They have formed and joined advocacy groups. They've rallied scientists, medical researchers and universities to their cause.
They have promising, high quality research in development: the application of CAR T-cell therapy to solid tumours, personalised gene therapies and targeted cardiovascular research. What they desperately need is funding. Australia has a well-established medical research fund, the MRFF, established in 2015 with the goal of providing $1 billion annually to medical research investment.
Yet, since the fund was fully capitalised in 2022, annual investment has stalled at $650 million. That's $350 million short of what could be an eye-watering sum being withheld every year from the Australian scientific and medical research community. This is not just frustrating to scientists and medical researchers.
The Australian Academy of Science has warned that low grant success rates are contributing to researchers leaving active research careers and being driven overseas. It means high-quality medical research projects are not being funded and that the world is being denied potential life-saving advancements and the incredible expertise of Australian scientific talent.
It means that we're not building out Australian scientific capability or downstream capabilities at a time when we should be strengthening our long-term productivity. But equally, behind every promising research proposal that's not funded, there's a real person whose life is not going to be saved or improved because of this decision and whose family is left asking why, as they desperately try to raise funds for expensive treatments overseas.
The Future Fund board has determined that it would be financially sustainable for the MRFF to make the full $1 billion annually available for research grants. I acknowledge my colleague the member for Kooyong for her sustained advocacy in this space. For Georgina, this extra funding would mean honouring Vanessa's life through investing in the work of the Centenary Institute relating to sudden cardiac death.
For Sasha, personalised gene therapies would allow her to regain her lost skills—to walk and talk again. For Lucy, it would give hope to the Australian children who relapse with neuroblastoma and otherwise face a devastating 10 per cent long-term survival rate.