‘Help us find hope to fight brain cancer when there is none’

It’s an aggressive brain tumour that eventually claims the life of each victim, but funding for research is abysmal. Now parents have started a campaign they hope will save lives, writes Cydonee Mardon.

Special investigation: Every year, 20 Australian children are given a death sentence, and within nine to 12 months most have left this Earth. Yet funding for research and clinical trials to stop one of the most aggressive forms of brain cancer in kids is abysmally low.

Hannah Pringle, who lost her six-year-old daughter Ruby this year, last week met federal Health Minister Mark Butler with other parents of children fighting diffuse intrinsic pontine glioma (DIPG), pleading for urgent funding.

“I personally think the funding for DIPG specifically is discriminatory to such vulnerable children,” Mrs Pringle, a registered nurse from Queensland, told the Sunday Telegraph.

“The funding that is given to brain cancer in general is minuscule compared to other cancer. But it’s highly documented how deadly brain cancer is. Without funding, there’s no research. Without research, there are no trials. Without trials, there is no data and treatment options. Without trials, there’s no options to fight or survival.”

Alegra Vasiliou, 6, from Sydney died in 2017 after a 10-month fight.

Until last month, the federal government had allocated $970,000 to DIPG research, about $5000 for each diagnosed child since 2015.

“In contrast, since 2018, over $125m has been funded for childhood leukaemia research, roughly $92,500 per diagnosed child,” Mrs Pringle said.

“This is 18 times more funding per child than DIPG receives.”

Last month, the government made the first real investment in years, announcing more than $700,000 for Dr Fatima Valdes Mora and a team from the University of NSW.

Families welcomed the spend but said it was the “tip of the iceberg” of what was needed and would help children years down the track – not those suffering now or those diagnosed in the next few years.

“This very welcome one-off funding is a small step in the right direction and we’d love for the momentum to continue so DIPG children aren’t given a death sentence at diagnosis,” Mrs Pringle said.

Parents are meeting for a round-table meeting with Mr Butler, along with DIPG researchers, on Friday, and are hopeful more funding will be announced. DIPG families and researchers are asking the government for $21m over the next three years.

Leading Australian research Matt Dunn said the “goal is to double survival in the next five years thanks to significant government investment”.

Charlie Teo Foundation chief executive Alana Phadke said charity funders were crucial in “plugging the funding gap”. Revealing the foundation had awarded $2.7m into DIPG-specific research in only a few years, compared to the government’s $970,000 over the same period, Ms Phadke said “we must unite together and support our scientists to do the work so desperately needed to get better treatments in Australia”.

Mrs Pringle said she found it hard to fathom how the government could find $200m of funding into women’s football after the Matildas starred in this year’s World Cup. That was 206.8 times more funding than dying children had received.

Nhi Pham, whose 14-year-old daughter Giang died three months ago, said while many other cancers had found cures and still continued to get the needed funding, the treatment for DIPG had not changed since 1962, with radiation being the only standard of care.

“All of us know who Neil Amstrong is, but not many people know that his daughter, Karen Amstrong, was diagnosed with DIPG at the age of two and died in 1962 before turning three,” Mrs Pham said.

“While her father has made the steps to the moon seven years later, mankind has made no advancement in the treatment of her disease after more than 60 years. Radiation still remains as the standard of care, which can only prolong the survivor time.

“The main reason for this no advancement in treatment is the lack of funding for research and clinical trials. While there is a lack of interest from pharmaceutical companies to fund research into such a ‘rare’ disease, we expect the government to bridge the gap. However, I am disappointed to find out how limited funding is put into DIPG.”

The devastated mums belong to a DIPG parents’ group, to which Mr Butler outlined the funding his government had been putting into brain cancer.

“Since 2015, almost $65m has been provided through the MRFF and the NHMRC (National Health and Medical Research Council) for brain cancer research, of which $13.1m has focused on brain cancer and brain tumours in children, including DIPG, with $970,000 focused specifically on DIPG,” Mr Butler wrote in a letter seen by the Sunday Telegraph. Mrs Pham said the letter was proof that funding for pediatric brain cancer research, in general, and DIPG, in particular, for the last eight years was insufficient.

“It is an unreasonable comparison, but ironically, this amount of funding is only a small fraction compared to what is putting in sport sponsorships,” she said. “The fact that the Australian government only spent $950,000 for DIPG research from 2015-22 is unbelievable.

“This lack of funding has resulted in the lack of clinical trials for DIPG patients. While Australia is not backwards in terms of research abilities, we do not have much clinical trial options for DIPG compared to the US.

“Many parents have to pay a fortune to bring their children overseas to join clinical trials as those trials give the kids the fighting chance they deserve. Those trials should be brought to Australia and covered by Medicare from our tax payments. We need to change this situation.”

She said any changes were too late for her daughter, who was a national rhythmic gymnast with her world ahead of her, and the other past and current “DIPG fighters”. “Research takes decades to turn into a clinical trial and some other decades to reach the cures,” she said. “But I hope it will not be too late for any future unlucky kids get diagnosed with this monster disease.

Words but no promises

The man who can make DIPG research funding happen has at least agreed more money is needed.

Federal Health Minister Mark Butler said DIPG was on the Government’s “radar”.

“It was such a privilege to meet with families who have gone through the tragedy of losing a child to DIPG,” Mr Butler said.

“They are working through their grief and trying to make a difference for other families.

“It was an incredibly powerful message of how difficult it is to deal with this devastating condition and the need for the country to step up and give families new hope in the future.

“We’re at a very early stage right around the world in understanding the condition.

“I’ve instructed the Department of Health to work with DIPG Australia, including Matt Dun, to find new research opportunities and also find ways in which we can link up with the cutting edge clinical trials that are happening right now in the United States.”

Alegra’s mum’s story

In 2017 Alegra Vasiliou lost her battle with brain cancer at the age of six, only 10 months after her DIPG diagnosis.

The following year her parents Marino and Sue-Ellan Vasiliou started the Little Legs Foundation and have so far raised $1.6 million.

Here is Sue-Ellan’s letter to the government:

“For some, the hour at which I write this would seem absurd.

As a mother who has lost a child, I can tell you, all time since has stood still.

The days and nights are consumed with much of the same. Longing for a child that has been taken from this world. Questioning your thoughts, feelings and actions as her mother, and wanting to know why I couldn’t take my child’s place

Her name is Alegra. Much like the meaning of her name she was and still, I am sure very much sure is, pure joy.

What seems to trouble me as I write this is that I am trying to find words to convince you, the world, that her life mattered.

That is simply not fair.

Instead I ask you, how did it not?

To be diagnosed with a disease that kills more children in Australia than any other, to be asked to take your child home and make memories. To only be given the same standard treatment given to a child with the same diagnosis from 60 years ago?

How does this great country and its leaders think this is enough?

Alegra has a legacy, it is a testament to her that we find the strength to carry on.

Since 2018 we have funded DIPG specific research almost double that of the federal Government since 2015.

And it’s not just us. Many grieving minds and hearts have been left to pick up the pieces and make a change for the children yet to be diagnosed in honour of their children.

Another question I have, when will the Government match the money raised by the legacies of all our angels?”