Posted 6 September 2024
This week, we joined the Victorian Chapter of the Australian Association of Medical Research Institutes (AAMRI) to present a compelling narrative to Victorian Parliament about the full costs of undertaking research and why it is more important than ever to increase funding for medical research institutes to be able to continue their life-changing projects.
Dr Michelle So, a senior researcher from SVI’s Islet Biology Laboratory brought to light how clinical trials, like BANDIT, incur pivotal costs that underpin the foundation and success of research, but are not covered by Government grant funding.
SVI, like other medical research institutes, must find and fund these significant expenses from fundraising, philanthropy, commercial income and other income streams that are not guaranteed, thereby putting the future of crucial research, such as BANDIT, at risk.
“From legal, commercial and financial resources needed to form multi-institute research teams – to social media expertise needed for rapid and effective trial recruitment – to biobanking samples from the trial – and importantly, IT databases and cybersecurity that are vital to collecting follow up data on our participants over several years, carrying out a clinical trial involves a significant number of costs and resources that are not covered by grant funding, but are paramount to our research and its success,” Michelle shared.
Type 1 diabetes affects approximately 127,000 Australians and people with type 1 diabetes are 5 times more likely to experience depression than the general population. This condition and its subsequent complications can cost the Australian economy around $2.9 billion each year.
SVI researchers have shown that a commonly prescribed rheumatoid arthritis drug can suppress the progression of type 1 diabetes. The world-first human trial, led by Professors Thomas Kay and Helen Thomas, showed that a drug called baricitinib can safely and effectively preserve the body’s own insulin production and suppress the progression of type 1 diabetes in people who initiated treatment within 100 days of diagnosis.
BANDIT trial participant Anna Johnston and her mum, Sarah-Jane Johnston, spoke at the event and shared how type 1 diabetes impacts their daily life and why they felt it was important to participate in a clinical trial.
“When I joined the BANDIT trial, I wasn’t only thinking about my future, but also how things could be better for my kids and grandkids who might also inherit type 1 diabetes.
I feel these trials are the only way that future generations will be able to live a life away from injections, medical appointments, infusion pumps, and hospitals,” Anna said.
For Anna’s whole family, type 1 diabetes has now become a way of life.
“Every decision we make as a family is impacted by managing Anna’s diabetes, and that of my son Max’s, who also lives with the condition,” said Sarah-Jane, Anna’s mum.
“Finding a cure for Type 1 diabetes would mean everything for our family and I believe that research is the only thing that will get us there.”