Carolyn Powell: Alice Springs cancer patient expresses fears for rare cancer service’s future
An Alice Springs woman living with stage 4 of a rare cancer says the possible closure of a rare cancer portal for regional patients like her would be a grievous blow. A top NT Health oncologist agrees.
Alice Springs
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Alice Springs woman Carolyn Powell, 52, is living with stage 4 endometrial cancer – and it has turned her life upside down.
“To be honest, I have had a lot of trouble coping when I first knew about things,” the softly spoken former library employee said.
“I’m not as fit as what I used to be on a daily level. I get tired a lot quicker than what I used to, and I have to be careful that I don’t catch anything from anybody, like the common cold.”
Ms Powell has regular blood transfusions at Alice Springs Hospital and attends counselling for support coping with the daily knowledge of the rare cancer – which is thought to affect 14.6 in every 100,000 women – sitting inside of her.
It’s not the only anxiety dwelling inside her head – she is worried the funding tap for the Australian Rare Cancer [ARC] Portal, an online referral service that aims to improve outcomes and access to research for Australians diagnosed with a rare cancer, is about to be turned off by the Commonwealth.
“I know the portal doesn’t just help me, it helps other people too,” Ms Powell said.
“They really are a wonderful service and I hope the government sees that and keeps them open.
“I would like them to make a cure [for endometrial cancer] in the long run. If the government closes the doors, that’s not going to happen.
“That’s how important ARC is to Australia.”
The portal, established in 2018 on the back of a $55m Commonwealth investment, has been used by more than 1500 rare cancer patients in Australia to be connected to rare cancer specialists, lifesaving clinical trials and breakthrough treatments, portal backer Rare Cancers Australia says.
It provides people, particularly those living outside of major cities, who make up 45 per cent of the portal’s users, “access to critical specialist rare cancer care anywhere, whilst also supporting navigation and cost of care”.
More than 85 per cent of participants have also consented to providing tumour or other biospecimens, “helping to generate an invaluable national biobank of clinically annotated rare tumour specimens”.
Yet, if the Commonwealth can’t find $4.7m in the upcoming budget to extend its operations for an additional three years, the service will be forced down, according to Rare Cancers Australia CEO Christine Cockburn.
“We already know that people diagnosed with a rare cancer are already facing more complex and isolating experiences in their cancer journey,” she said.
“To have the added complexity of being regionally or rurally located and therefore unable to access the right medical professionals with the right knowledge at the right time is unimaginable.”
Royal Darwin Hospital gynaecological oncologist Dr Michelle Harris, who treats Ms Powell, said access to the ARC Portal had been “practice-changing for me, and a lifeline in providing high-level cancer care in a regional setting”.
“The ARC Portal has influenced the diagnostics of our rare cancers, providing detailed genetic and molecular analysis, and offering expert guidance on treatment including treatment which would not have been accessible otherwise,” she said.
“While there may be alternatives for patients in large metropolitan centres with associated research institutions, this is not the case in regional Australia.”
In a statement, a spokesman for the Commonwealth health department said in addition to the seed funding of $55m, the ARC Portal’s architect, Omico (formerly the Australian Genomic Cancer Medicine Centre) had also received federal grant money of up to $66.2m for other projects under its auspice.
He noted a further $166m had been invested under last year’s budget to establish a new Australian Cancer Nursing and Navigation Program, expanding telehealth options for cancer patients.
The spokesman said he could not pre-empt what funding may or may not be included in the budget, which will be handed down on May 14.
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