The only thing standing in the way of rare cancer is funding


By Mardi Chapman

14 Aug 2017

A little affirmative action in the funding of research into rare cancers could go a long way, according to a new report from Rare Cancers Australia.

The report, launched at their recent CanForum17, calls for a redistribution of research funds to build the evidence necessary to underpin the registration and reimbursement of new therapies.

 Professor David Thomas, director of the Kinghorn Cancer Centre and head of the cancer division at the Garvan Institute of Medical Research, said patients with rare cancers have been effectively subsidising more common cancers.

“The fact of the matter is that rare cancers comprise about 1/2 of all cancer deaths and as taxpayers, the people affected have been paying for their fair share of cancer research funding and cancer drugs and seeing it go disproportionately into the care of other people.”

He told the limbic they were not trying to ‘relax the rules of our excellent PBS scheme’ but seeking to generate more evidence to put to the PBAC.

 “The problem here is a lack of research in rare cancers and if more money could go towards that, it would be an important step in the right direction.”

 He said cancer research was shaped in part by funding opportunities.

“Researchers have to have some confidence they can raise money for questions that are fairly generic. If there isn’t funding for rare cancers, then it tends to be channeled inevitably to a focus on those more common cancers.”

“The situation with rare cancers is that there have been developments over the last 10 years that enable technologies to particularly benefit this group of patients.

“In many cases, to be frank, it’s obvious what has to be done. Literally the only thing standing in the way is funding.”

He said a Garvan-led basket trial, which offers a molecular test and matched therapies for cancer patients, but particularly rare cancers, had enrolled almost 250 people from across the country.

“There are drugs out there that target particular genes, like herceptin for breast cancer that targets HER2 also found in pancreatic cancer, gastric cancer and small intestinal adenocarcinoma.”

“You would never go looking for that target and the drugs aren’t reimbursed for those diseases; they are reimbursed for breast cancer. But a really important question to be asked is whether that highly effective drug for breast cancer might not work across a range of cancer types which share the same mutation.”

Professor Thomas also welcomed the announcement by Health Minister Greg Hunt to consider ways in which PBAC could become more flexible and accommodating of patients with rare cancers.

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