Con­nie’s legacy an in­spi­ra­tion

The Cairns Post - - VIEWS -

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.

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