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‘Who’s got $500,000 lying around?’: Cost prevents access to groundbreaking cancer treatment

Email Immunotherapy a groundbreaking new cancer treatment, but prohibitively expensive 7.30 By Tracy Bowden

Posted September 10, 2019 13:44:01

Dave Roberts sitting up in his hospital bed surrounded by equipment Photo: Chemotherapy did not work on Dave Roberts's form of lymphoma. (Supplied: Dave Roberts) Related Story: 'If you can't find the money you're going to die', cancer patient says Related Story: Nobel Prize for breakthrough that helps the body fight cancer Related Story: Call for PBS to include subsidies for more rare cancer treatments Map: Australia

Dave Roberts is fighting for his life, and his doctor says there is only one option left to him, an immunotherapy treatment called Kymriah.

Key points:

  • Dave Roberts has a form of lymphoma and is hoping immunotherapy could be a cure
  • Novartis manufactures Kymriah, which could be an effective treatment but costs $500,000
  • Mr Roberts is calling on the Government to provide assistance to make the treatment more accessible

"My doctor has stated … that this drug is basically my only hope of survival," he told 7.30.

The treatment is approved for use in Australia but is not yet funded by the Federal Government for people with Mr Roberts's form of cancer, so it would cost him $500,000.

"Who's got $500,000 lying around?" he said.

"You'd hope that when a life-saving opportunity like this comes along the Government would be obliging in providing assistance."

Richard Vines, founder of the charity Rare Cancers Australia, said the limbo Mr Roberts was caught in was unacceptable.

"He is really caught in the middle of a price negotiation between [drug company] Novartis and the Government. And that is wrong," he said.

"It just requires two sets of people focusing on the patient and not bank accounts."

'If he coughs too hard he'll fracture a rib'

Dave Roberts and his children all sitting on one side of a table in a large cafe, with the bar and counter in the background Photo: Dave Roberts, pictured with his children, was healthy less than a year ago. (Supplied: Dave Roberts)

Six months ago Mr Roberts was fighting fit.

"My health was fantastic, I was training in the gym, doing a lot of weights," he said.

The 48-year-old former policeman was diagnosed in April with diffuse large B cell lymphoma, a cancer that begins in the lymphatic system.

"Unfortunately the attempts to cure the lymphoma through chemotherapy for me hasn't worked," he said.

"They've tried three different levels of therapy and all three of them have failed."

His three children are struggling to understand what is happening to their dad and how quickly the disease has progressed.

"He's a completely different person physically from what he was like before," his eldest daughter Reanna said.

"He's got fractured bones and he's got cancer through his bones.

"He'll cough and if he coughs too hard he'll fracture a rib."

'I would want to get access'

Dr Darren Saunders, in a lab coat, sits in a chair against a pale wooden wall Photo: Cancer biologist Darren Saunders says immunotherapy has proven benefits, but not for every patient. (Supplied: University of NSW)

Kymriah is a groundbreaking immunotherapy treatment that uses the body's own T cells to fight cancer.

"It is a form of living drug where the patient's own immune cells, the T cells, are taken out of the body, engineered to find and hunt down and destroy tumour cells, and given back to the patient," University of NSW cancer biologist Darren Saunders said.

"So it's a way of supercharging the patient's own immune system to destroy their cancer."

But he warned scientists still did not understand why the drug worked for some patients but not others.

"It's got enormous proven benefit already in some cancer types," Associate Professor Saunders said.

"For particular leukemia and lymphoma types, it has proven beneficial for large numbers of people, not for every patient that has the disease.

"You can see from a patient's perspective you want to get access to this thing.

"If it was me, I would want to get access to this thing.

"How do we deal with the cost of that, is the big question."

'It's treatable. We should have a mechanism'

Portrait of Richard Vines, standing outside with a blurred background. Photo: Richard Vines, CEO of Rare Cancers Australia, says Dave Roberts's cancer is treatable. (Supplied: Richard Vines)

Mr Roberts's daughter Reanna has already contacted the Government to ask what it can do.

"The night we found out the extent of what was happening and found out about the drug therapy, I took it upon myself to write to Mr [Greg] Hunt, the Minister for Health," she said.

"I said, this is the situation we are in and this is something that could really help him, and we would love access to it, and it's not just us but so many other people as well."

She has yet to receive a reply.

In a statement to 7.30, a spokesperson for the Minister for Health said the Government was already looking at Kymriah.

"The Medical Services Advisory Committee is currently considering an application from Novartis to expand access to Kymriah," the statement said.

"We will continue to urge [Novartis] to support Mr Roberts."

Novartis is the Swiss-based multinational which manufactures Kymriah.

"Novartis has been in contact with the patient's treating doctors to understand if the patient may be eligible for any of the ongoing Novartis clinical trial programs," it told 7.30 in a statement.

"Unfortunately it is not possible to provide compassionate access for this type of emerging therapy at this stage, due to its complexities."

But that did not wash with Mr Vines.

"Complexity be damned," he told 7.30.

"It is treatable. We should have a mechanism.

"Now, that maybe the Government agreeing to a pilot program, it may be the company agreeing to a low up-front cost to get the treatment into the community and available to the people who need it."

A light at the end of the tunnel?

Reanna and Dave Roberts in the hospital room Photo: Reanna and Dave Roberts are still hoping for a positive outcome. (Supplied: Dave Roberts)

Researchers and medical experts are upbeat about the prospects for the new treatment.

"My clinical colleagues will tell us that this broad umbrella of immunotherapies has been the biggest breakthrough they've seen in their entire careers," Associate Professor Saunders said.

And that gives hope to Mr Roberts and his daughter Reanna — if they can find the funds.

"We've got a bit of light at the end of the tunnel, but it's still a dead end because we can't get there," Ms Roberts said.

"They're talking about a cure, so there is a chance of being able to live out a normal life after receiving this medication," Mr Roberts said.

"It does give me hope, where I can hope to be with my family for a longer period of time."

Topics: government-and-politics, federal-government, health, cancer, pharmaceuticals, health-policy, medical-research, australia, sydney-2000

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