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Patients with rare cancers fight for more research, funding, support

Kim Arlington

As a teenager, Kelly Cartwright dreamed of playing netball for Australia, but a niggling pain in her knee forced her to give up her favourite sport.

"The doctors kept telling me it was growing pains and it would just go away," she said. "It wasn't until two years later that I went to get a scan and they found a lump."

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Cartwright had a synovial sarcoma, a rare and aggressive cancer that forms in soft tissue. "My mum and dad and I were asking my doctor questions he couldn't answer, because he'd never seen anything like it," she said. There was little the doctors could do: "Basically amputation was my only chance of survival."

At the age of 15 she had her right leg amputated above the knee. She went on to compete as a Paralympian in Beijing and London, winning gold in the long jump and silver in the 100 metres in 2012.

Now an ambassador for the charity Rare Cancers Australia, Cartwright is raising awareness of the particular challenges faced by patients battling rare or less common cancers. 

They account for 30 per cent of all cancer diagnoses and almost half of cancer deaths, but receive only 13.5 per cent of research funding and 12.6 per cent of funding for treatments through the Pharmaceutical Benefits Scheme.

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Not only does this affect survival rates for the 42,000 Australians diagnosed each year, it leaves many struggling to pay for their own treatment - something Rare Cancers Australia is working to rectify.

"Every cancer patient deserves a fair fight," Cartwright said.

Paralympian Kelly Cartwright, who won gold in the long jump at the London 2012 Olympics, was diagnosed with a rare cancer (synovial sarcoma) in her knee at age 15.

Paralympian Kelly Cartwright, who won gold in the long jump at the London 2012 Olympics, was diagnosed with a rare cancer (synovial sarcoma) in her knee at age 15. Photo: 776BC

Through events such as the Mount Kosciuszko challenge, Rare Cancers Australia has raised $1.75 million in just over two years, helping 50 patients pay for treatment.

But the charity's co-founder, Kate Vines, who survived a rare thyroid cancer, said the fact that patients have to rely on crowd funding for potentially life-saving treatment - sometimes costing $8000 a month - shows "the system is broken". 

"There is this huge percentage of Australians who are penalised because they're unfortunate enough to be diagnosed with a rare cancer," she said. "They feel that they're abandoned."

Most cancers aside from breast, prostate, bowel, lung and melanoma are considered rare or less common. They are the leading cause of death for children under 15 and Australians aged 40 to 69, killing around 24,000 people each year.

There are 186 types of rare cancer. When one affects only a small number of patients, it is harder to secure research funding or run clinical trials for that disease. Patients are diagnosed wrongly or too late and with limited options for treatment, more of them die, leaving fewer people to advocate for more support, funding and research.

"The researchers find it easier to get funding for something that's going to have a bigger impact, and the drug companies can't give the Pharmaceutical Benefits Advisory Committee (PBAC) the data they need to approve these drugs," Ms Vines said.

Rare Cancers Australia is building an online patient support hub and urging the federal government to revise the way medicines are listed on the PBS and consider broader financial benefits - such as reduced hospital costs and greater workplace productivity - when assessing whether a drug is cost-effective. 

Professor David Thomas, director of The Kinghorn Cancer Centre and head of the cancer division of the Garvan Institute in NSW, said the system was failing patients with rare cancers, and that treatment and research funding had largely been driven by outdated classifications.

"Traditionally cancers have been classified according to where they arise and not on the basis of what makes them tick," he said.

Now more is known about the molecular biology of cancers, researchers can target genetic abnormalities with specific treatments. Professor Thomas is leading a new program for patients with rare cancers, conducting molecular screening of individual tumours to match them to appropriate therapy. 

"We can now show that treatments work by testing an individual person's tumour," he said. "It makes possible for the first time the testing of treatments in quite small populations, but unfortunately our system hasn't evolved to supporting those kinds of trials yet."

He said outcomes could be improved by giving patients greater access to clinical trials and to drugs, by lowering the threshold for approval.

"You might ... give conditional approval that enables more people to get access to the drug while we accumulate more evidence," he said. "If it does turn out to be useful, people will have got it years before [they] would have otherwise."

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