Connie’s legacy an inspiration
LAST week we heard the sad news that Connie Johnson had died from cancer.
Connie was an inspiration to many, including the medical researchers and doctors who came to know her so well.
That Connie battled cancer multiple times, in the process raising almost $6 million through the Love Your Sister charity she founded with her brother, Samuel Johnson, is wellknown.
What is barely well-known is the huge role Connie played, along with Alastair Lucas, who also died of cancer last year, in establishing the $20 billion Medical Research Future Fund.
This initiative was announced in the Coalition government’s Budget in 2014, with its establishment directly linked to a proposed GP co-payment.
The government said the MRFF would pay dividends of about $1 billion each year, effectively doubling the government’s investment in medical research.
For too long, so many great Australian discoveries have either not had the funding to be taken to the next stage of development, or have had to be taken overseas for further work.
The MRFF was to be Australia’s opportunity to take its amazing labbased discoveries and turn them into new treatments, drugs and medical devices. It would speed up that process from bench to bedside, an area in which we’ve not been as good as we need to be.
Australian patients would get the opportunity to benefit first from new drug discoveries by having access to clinical trials.
Researchers and drug companies would no longer be compelled to take these discoveries offshore for development and that would mean a reduced delay in patients benefiting from new treatments.
At the time, only the most optimistic of us thought the MRFF would ever see the light of day. The link to the GP co-payment made the fund unpopular and it looked like this once-in-a-generation opportunity would pass us by.
It was Connie who brought the optimism and enthusiasm we needed to go to Parliament House in Canberra and persuade our politicians to put politics aside and focus on improving the future health of the nation.
Connie met dozens of politicians and made the case for the MRFF with passion and in a way that no lobbyist or medical researcher ever could.
She pressed home the importance of establishing the MRFF and what it would mean for cancer sufferers and their families; how it would give them a renewed sense of hope, not just for themselves, but so that one day people wouldn’t have to go through what they have been through.
She delivered her message to politicians with enthusiasm and energy, all the time in a great deal of pain.
At that point in 2014, she had been told her cancer was terminal, having spread to her lungs, liver, pelvis, spine and knee. But being told she had only six-12 months left did not did not stop her.
With Connie leading the way, support was secured from MPs across parliament: government, Opposition and crossbenchers.
That meant the legislation establishing the fund easily passed parliament. It is doubtful that could have happened without Connie and we all owe her a great deal.
The MRFF is well on its way to the target $20 billion by 2020-21, with $6.8 billion now invested in it.
The first $66m for research projects was recently announced. This has funded new clinical trials, such as for teen cancer and motor neurone disease, as well funding to fight antimicrobial resistance.
But just as important as her contribution to securing this additional investment is the inspiration she has given us. When results we see in the lab aren’t what we hoped for, we can sometimes despair, making it hard to see a way forward.
But Connie’s story keeps us going and helps drive us each day as we search for the answers to one day be able to say to others that we have a cure for them. Prof Tony Cunningham AO is the Association of Australian Medical Research Institutes president. This article was prepared with Prof Doug Hilton AO, director of the Walter and Eliza Hall Institute, Prof Brendan Crabb AC, director of the Burnet Institute, and Peter Scott, chair of the Medical Research Future Fund Action Group
PASSION: Samuel Johnson and his late sister Connie Johnson.