Rare cancer sufferers face long waits, high costs for treatment

Relatively lucky: Lillian Leigh, with husband Peter and their daughter.Lillian Leigh was taking in the view from the train on her way home from work when a call from her father – who doubled as her GP – turned the world on its head. Her radiology scans had come back with news far worse than either had anticipated: stage four lung cancer.

Ms Leigh, then just 34 and the mother of a three-year-old, ran home to embrace her husband Peter, and scoop up the little girl. “I got home and there were no words, no words that anyone could say,” she told Fairfax Media. “My husband and I, we didn’t talk, there were lots of tears, and I was just holding my child, wondering how long I had.”

Relatively lucky: Lillian Leigh, with husband Peter and their daughter.
Relatively lucky: Lillian Leigh, with husband Peter and their daughter.
The illness had crept up on her by stealth, with few signs beyond a slight cough and a fatigue that she could never quite dispel but which she put down to a busy life as a social justice lawyer and parenting a toddler.

More tests revealed hers was one of the very rarest forms of non-small cell cancer. But, she says, she was “relatively lucky” in that a persistent oncologist found that her disease might respond to an expensive anti-cancer drug called Xalkori. The only problem was that it was not available as a government-subsidised drug for people with her kind of cancer, although it was for others with different cancer variants.

Ms Leigh spent $40,000 from her own funds on the drug over several months before she had to stop taking it because of severe side effects.

Again, in her own words, she was “lucky” enough to be enrolled in a trial for an even newer drug, Lorlatinib, which has now markedly improved her prospects over the last 18 months.


But her story highlights the inequities that bedevil the treatment regimes available to different classes of cancer patients. It’s a situation that cancer specialists and patients hope to tackle in a two-day conference beginning in Canberra on Tuesday aimed at finding ways to make the latest advances in cancer treatment much more widely available.

Chairman of Rare Cancers Australia Richard Vines says there is growing hope for sufferers about new frontiers in combating the disease. But he says that “the technology and medications are coming so fast right now that the science is well ahead of the policy and the regulations”.

One problem is clunky and outmoded protocols for running clinical trials, which often leave rare cancer sufferers out of the loop because they don’t have the same weight of numbers that the more common cancers do. Another anomaly is drugs being subsidised for some forms of cancer, but not other forms of the disease, even though they might be just as effective for the non-approved user group as the approved group.

“Right now the system is that each [use] has to be applied for separately and subsidies are set at a different price and the rarer ones will be right at the end of the process. It’s bureaucracy gone crazy,” Mr Vines says.

Professor Michael Boyer of the Chris O’Brien Lifehouse Centre in Sydney says improving outcomes in cancer is not just about new drugs and who has access to them, but about access to services. “If a patient is sitting in Bourke how do you make sure they have access to the things they need, the tests and the biopsies and the specialist expertise? It really is about the care delivery system as well.”

Ms Leigh says she hopes the conference will mean more “equitable access and expediency” for cancer sufferers like herself.

She knows people who have died because they could not get onto a trial and had no other way of accessing a new drug.

“As soon as we know that it works, a country like Australia should not have people lose lives because they cannot access these drugs,” she says.


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