Editor’s view: Stop the lip service, and cough up some cash
To our readers, the issue of funding for aggressive brain tumours is cut and dried – the federal government needs to spend more money on research and clinical trials.
There is no ambiguity.
Since launching our Maddy’s Wish campaign for funding two weeks ago we have been inundated with letters and notes from readers who cannot understand why the government is holding out.
As it proudly announces $600m for a new rugby league team in PNG and millions of dollars of funding the failed referendum into a Voice to parliament, pleas for $21m for research into the killer brain tumours go unheard.
In the words of one of readers … it is a f—ing joke.
Not only should the $21m be handed over immediately, it should be just the beginning of a funnel of funding to help the medical community better understand a cancer that is a death sentence for people diagnosed with tumours. The big question is, why are we waiting?
Researcher and father of a victim, Professor Mat Dun, doesn’t know the answer to that question.
Neither does mum and dad Terry and Beau Kemp, whose son, eight-year-old Ryley, died earlier this year. The Kemps are currently overseas on a trip they say is “running away from their lives”.
Since the death of their beloved Ryley, 14 months after he was diagnosed, they can’t see their place in the world. The Kemps, like so many other parents of children who have lost the battle with these “monsters in their heads”, are proud and loud supporters of the battle for funding.
When their children pass, they don’t just move on and deal with their grief alone.
They continue the fight.
So passionate are they about helping other families who will have to deal with the pain of losing a child, they stay angry and they remain vocal.
The campaigners understand the competition for funding for medical research is tough, and they do not begrudge any researchers who have been given funding. They are as committed to helping sufferers of all types of hideous cancers. But they do want their share of the funding pie. And they are sick of MPs and ministers posing for photos with brochures of their children and then walking away without any commitments to helping their plights.
They are sick of missing out on funding allocations every year after being promised they were under consideration.
They are sicking of sitting in the same room, saying the same things, presenting the same statistics and research frameworks and then being ignored.
They are sick of the same platitudes and feeble words of support that don’t translate to anything concrete.
And they are sick of watching their children die every year when nothing is being done by the government to help them.
They are also sick of feeling like they shouldn’t get angry publicly and complain about a lack of support out of fear the funding door will be closed on them for good. Well, they don’t have to complain any more – we will do it for them.
And so will our readers. And there are a lot of them.
We won’t let this go until something is done about it.
The parents, surgeons and researchers know this is a difficult puzzle to solve, and clinical trials and scientific studies could take some time to find answers.
But the longer they have to wait, the further those solutions are from being found, and the more children there are who will die. Surely, that is unacceptable to everyone, including the Minister.
The Kemps ask the following of all of our politicians. “I am going to assume many of you have children, grandchildren, nieces, or nephews. Yes? Imagine that tomorrow you take your child for an optometrist appointment, thinking they may need glasses … but within hours you are told:
• Your child has D.I.P.G;
• Your child has six to 12 months to live;
• We cannot operate on your child because of where the tumour is located;
• Chemo is not effective on this type of cancer;
• There are no effective treatments other than palliative radiation that will only buy them time (if it works);
• We suggest you go home and make memories.
“Can you believe that these are the same words spoken from doctors all over the world, for more than 60 years. That within this fortnight in Australia, a family will be taken into a small room and told these words.
“DIPG is horrific. It is 100 per cent fatal. How can you ignore these facts?”
How indeed.
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