Opinion: The tragedy of health and medical budget cuts

Two weeks ago I received a letter from a reader, Mary*, who had come across a story on the Australian Life Scientist website about a recent discovery that might help combat acute myeloid leukaemia (AML).

Her tone was desperate. And understandably so. Her cousin’s daughter, Alice*, all of five years old, had been diagnosed with AML late last year.

AML is a rare disease, particularly in children. It is often terminal.

Alice underwent chemotherapy starting immediately after her diagnosis. It was unsuccessful. But then using state-of-the-art technology, her oncologist identified an abnormality in a gene called flt3, which has been associated with AML.

This led to a new treatment using sorafenib, which is one of a new generation of drugs that target specific proteins and mutations associated with cancers. Sorafenib is normally used to treat kidney and liver cancer, but it was agreed to trial it on AML in this case.

The initial results for Alice were positive, with bone marrow only containing around four per cent leukaemia cells after treatment.

In January she also underwent a stem cell transplant using umbilical cord blood to help recover some of the bone marrow destroyed by the chemotherapy treatments.

Things appeared to be progressing well until last month when juvenile leukaemia cells were found in Alice’s blood. This was when Mary made her impassioned appeal.

There are sometimes trials of new treatments or drugs that are close to seeing approval by the regulators that individuals in dire need can apply for. In this case there were none.

Alice slipped into a coma, and died several hours later at 11.45 am yesterday, on Sunday 10 April.

It is difficult to remain unmoved by such a tragic story. Yet these tales are by no means uncommon. We each hear them through friends and family. As a journalist covering the life sciences and biomedical research, I receive letters by people like Mary all-too frequently.

That’s not to say working on Australian Life Scientist is an entirely morbid pursuit. On the contrary. The overwhelming majority of the time I find this magazine inspires optimism. Every day I am exposed to new studies and clinical trials that offer the hope of curing some of our most intractable diseases.

Cancer, Alzheimer’s, Parkinson’s, diabetes, HIV, malaria – the list goes on. There are thousands of researchers here in Australia and worldwide working tirelessly to end the scourge of these ailments on humanity.

And often they work in less than ideal circumstances and with less than optimal funding. Big pharmaceutical companies typically wait until a new treatment has already proven itself to be a potential life saver before they inject money to develop it into a commercial product.

But how to prove your breakthrough can really save lives? So many new discoveries turn out to be dead ends – although even a negative result in science can lead to new insights and new potential avenues for treatment.

It’s all risky stuff. And expensive. Few venture capitalists will even consider funding early-stage research. For that, we need the government. It’s a good investment too: increasing the number of healthy, able people and reducing the burden on our health care system yields solid dividends, not only tangible economic benefits, but also intangible benefits in terms of national wellbeing.

Yet in 2009 the National Health and Medical Research Council (NHMRC), with a budget of around $700 million, was only able to fund 30 per cent of research deemed to be deserving. A full 70 per cent of worthy projects went unfunded. 70 per cent.

Imagine how many life saving treatments we might have seen in 10 years time had they been funded. Given the staggering progress we’ve made over the last decade – including developments like personalised medicines such as sorafenib – one can only guess at what we’re missing out on.

And yet last week it was revealed that the federal government is rumoured to be toying with the idea of slashing the NHMRC’s budget by a staggering $400 million over three years. That’s a cut of roughly 20 per cent year on year to a funding body that is already desperately overstretched.

This comes only a few months after the Australian Society for Medical Research made a request that the government increase funding to the NHMRC by three per cent if Australia is to maintain a leadership position in health and medical research. Only three percent.

Understandably, Australian researchers are stunned and outraged.

One of them is Professor Doug Hilton, head of the prestigious Walter and Eliza Hall Institute, which is one of the world leading medical research institutes. He gathered yesterday with patients who have been treated for breast cancer, diabetes, macular degeneration and cystic fibrosis to plead for the federal government not to slash health and medical research funding.

“Budget cuts will mean that ordinary Australians will be denied the benefits of research-driven improvements in the prevention, diagnosis and treatment of our biggest disease challenges: cancer, diabetes, arthritis, heart disease and neurodegenerative disease, to name a few,” he said.

“To be blunt, years of healthy-living, especially for the elderly, will be reduced and lives will be unnecessarily lost.”

Murdoch Children’s Research Institute Director, Professor Terry Dwyer, was also there. “People expect that when children get sick doctors and nurses know what to do to make them better,” he said.

“This knowledge comes from research. A cut in research funding will have a direct impact on the future health of Australian children and families, significantly impacting on our ability to address the big issues currently affecting child health like allergies, diabetes, premature birth, cancer and genetic disorders.”

So, why might the government contemplate such drastic cuts to one aspect of the budget that has such unquestionable returns?

They want to return to surplus. Why?

Politics.

They’re ones who committed to a self-imposed the mandate to return the economy to surplus in 2012-13. At any cost, it seems. Better to slash health and medical research funding than be accused by a bloody-minded opposition of being poor economic managers.

It’s gut wrenchingly tragic.

And when we hear stories like that of Mary and Alice, it brings home just what health and medical research is all about. Alice may not have been saved a result of the funding under discussion today, but research that goes without funding in the next round could well be the breakthrough that eliminates AML in a decade’s time. As someone who covers life science research, this is not a hyperbolic claim.

Let’s not stand for this toying with the future of health and medical research in this country. If the government is contemplating cutting the NHMRC budget, let them come out and say precisely by how much. And exactly why.

And if it truly is $400 million – or $200 million, or $50 million – we should make ourselves heard. Write a letter to our local member. Sign a petition. Write to our local paper.

Or attend the Rally for Research, to be held in Sydney tomorrow, Tuesday 12 April, at Belmore Park near Central Station from 12.45pm to 2pm.

So much that the government does these days is politicking. This time it’s dealing with real lives.

*Names have been changed.