Sending patients interstate for innovative cancer therapy ‘suboptimal and risky’, specialist warns

by Admin
July 10, 2024

Sending critical cancer patients interstate for specialised treatment is both “suboptimal and risky”, a leading haematologist has warned, as the South Australian government explores offering the treatment in Adelaide.

Chimeric Antigen Receptor (CAR) T-cell treatment was developed in the 2010s and involves collecting a type of white blood cell from a patient, re-engineering them in a laboratory, then returning them to the patient’s body where they multiply and attack cancer cells.

Adelaide haematologist Pratyush Giri said several South Australians had been referred to Melbourne for treatment, including in “particularly high volumes” from the Royal Adelaide Hospital (RAH).

Patients had to travel interstate with a central line — a long tube — inserted deep into a large vein that allowed for treatment or the drawing of blood.

Dr Giri warned they could have a “significant medical event” if the line were pulled out.

He said there was also an assumption that the family of a CAR T patient would be able to help them live independently for at least a month interstate after a week in hospital, which was “often difficult with elderly patients with little support”.

He said some of these patients subsequently declined the referral interstate and died from suboptimal treatment in SA.

“So we miss out on effective therapy for a few patients,” Dr Giri said.

He said there was also a timing issue with CAR T therapy.

“We want to collect patients’ [autologous] T-cells before they get exhausted by chemotherapy,” he said.

“We have to opt for less desirable and unnecessary therapy as the timing sometimes doesn’t suit the interstate centre.”

He added that if a patient had an “adverse outcome” from treatment interstate, “retrieving the patient back to our state is not only a major undertaking but also a traumatic experience for the family.”

Too little, too late

South Australian police officer Robin Firth died in Melbourne on November 2022 after being diagnosed with mantle cell lymphoma in January 2016 at the age of 46.

His wife, Dawn Firth, said he had reached a stage that year where he was told there were no further treatments available with their only option to travel to America for CAR T therapy.

After being told that without it “he wouldn’t make Christmas”, Mrs Firth said her husband wrote to SA politicians who took on his case and argued that patients should not be getting sent to America.

The late Robin Firth received several rounds of chemotherapy for mantle cell lymphoma.(Supplied: Dawn Firth)

“CAR T was available in Melbourne at the Peter Mac (Peter MacCallum Cancer Centre), only it was for different kinds of cancer and Robin’s wasn’t one of them,” Mrs Firth said.

“For four months we went backwards and forwards and eventually it was agreed that we could go to Melbourne for Robin to get the CAR T therapy. SA would pay 50 per cent and the Commonwealth would pay the rest.”

By then, however, Mr Firth’s situation had deteriorated due to delays in getting the treatment he required.

“We went to Melbourne in October. We were due to be there for eight weeks and unfortunately we were there just over four weeks when Robin died,” Mrs Firth said.

She said his haematologist, Dr Giri, and the team at the RAH arranged for Mr Firth to be brought back to Adelaide after being told he would be moved to palliative care in Melbourne.

He had wished to be at “home” if the treatment did not go to plan.

Robin Firth is survived by his daughter, Beth, and wife, Dawn.(Supplied: Dawn Firth)

“Unfortunately Robin died in the back of the ambulance that was transporting him to the air ambulance,” Mrs Firth said.

“The trauma for our daughter Beth and I to watch Robin die in these circumstances away from home was beyond heartbreaking.

“After fighting so hard for seven years, this is not how it was supposed to end.

“No other families should have to battle the system to gain access to life-saving treatment and be expected to travel from home when they are already very unwell, taking them away from everything and everyone they know and trust.”

Governments foot bill

CAR T treatment typically costs more than $200,000 and it is jointly paid for by state and federal governments, including for patients sent interstate to receive it.

SA policeman Robin Firth died shortly after starting CAR T-cell therapy in Melbourne.(Supplied: Dawn Firth)

Victoria, New South Wales, Queensland, and Western Australia offer the therapy in selected public hospitals.

About eight South Australians were referred interstate for the treatment in the 2022-2023 financial year.

An SA Department for Health and Wellbeing spokesperson said it had been “actively exploring the delivery of this highly specialised treatment in our state”.

“The department is currently working with a number of agencies to develop an approach for evaluating the introduction of these therapies so we can make an informed decision on whether a local program can be viably introduced,” the spokesperson said.

Petition launched

Adelaide woman Steph Walker recently launched a petition to bring the therapy to SA after her father was referred to Melbourne for six to seven weeks for CAR T-cell therapy.

“If anyone else has gone through a cancer journey, they’d know how much it can really destroy the strongest man you know,” she said.

“It’s quite tough on us, especially not being able to be with him during this time.

“We’re going into this final treatment option with a 25 per cent success rate, so he might be spending his last six weeks there fighting for his life away from his family with no support system.”

Her petition has received about 4,000 signatures after passing 3,000 in just five days.

Steph Walker said her father was diagnosed with cancer two weeks after her wedding.(Supplied: Steph Walker)

The SA Commissioner on Excellence and Innovation in Health, Professor Keith McNeil, told ABC Radio Adelaide that the “basic knowledge and expertise” already existed in SA to offer the therapy.

“It’s just a question of bringing it all together and making sure the laboratory’s set up, the administration’s set up, making sure all of those things are in place, and to make sure there are enough cases to justify doing it on an outcomes basis,” he said.

He did not anticipate the cost being a big issue because SA was already paying for patients to go interstate for what was a “very expensive therapy”.

“There would be some set-up costs, and reconfiguration and staff training to go into there, and that’s part of the decision-making process,” Professor McNeil said.

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