Rare cancer sufferers fight to get drugs on PBS

Immunotherapy drugs are not subsidised on the Pharmaceutical Benefits Scheme for most rare versions of the disease.

Sarah McGoram, who suffered a rare cancer, with her son George.

People with rare cancers are being forced to sell their homes, raid their superannuation and fundraise as much as $10,000 a month to pay for immunotherapy drugs as the number of patients unable to access innovative cancer technologies, therapies and services grows larger.

Publicly funded immunotherapy treatments are now available for a host of common cancers and are saving and extending cancer patients’ lives, often when other treatments have failed.

But immunotherapy drugs are not subsidised on the Pharmaceutical Benefits Scheme for most rare cancers, often because clinical trials that would be large enough to prove the therapy works have not been able to be performed by drug companies due to the lower incidence of rare cancers. Drug companies are also not inclined to apply for public funding for drugs for rare cancers that will not make them much profit.

But Rare Cancers Australia and the children’s charity Canteen are pushing for a new approach to drug funding for rare cancers that recognises the enormous social impacts that result from the deaths of patients who are unable to access treatment.

In a report entitled Counting the Cost, Rare Cancers Australia is calling for the federal government to fund innovative treatments for all rare cancer cases, which they say would cost $1bn over 5 years but save the country $3bn taking into account the social and economic value created from extending patients’ lives.

“The cost of not treating these patients is enormous. What strikes me is the incredible waste,” says Rare Cancers Australia CEO Richard Vines. “We work hard, we pay our taxes. If it is you or me that is diagnosed with a rare cancer, the government can’t just wash their hands. We can’t have a situation where people are just denied treatment because the system is too rigid.”

Despite the rapid emergence of transformative cancer treatments in recent years, the time frame for patients to access them is lengthening. And while there have been dramatic reductions in mortality for more common cancers due to early diagnosis and improved treatments, but this has not been the case for rare and less common cancers.

Immunologist Robert Tindle lost his daughter Danielle to a rare neuroendocrine cancer in 2017. In the years before she died, she had paid over $100,000 for treatment.

“Nothing prepared me for my daughter’s encounter with the EFTPOS machine at the oncology reception counter,” he writes of the experience.

Sarah McGoram was diagnosed with gastrointestinal stromal tumours at 18 and has lived with rare cancer her whole life. She says every life is worth investing in. “I am determined to keep fighting until there is equal access to treatments for all rare cancer patients, so we don’t have to fundraise and stress about whether we can pay for our next treatment.”