The C-word:

As some cancer patients die trying to access drugs, others have no options to begin with. Is hope on the way? reports.

IRachel Thomas

n October, the updates on Annemarie Hope-cross’ Givealittle page are full of hope. “I’m totally humbled and blown away by everyone’s generosity,“she writes as donations pour in. Messages of gratitude are shared with a photo of Hope-cross with her husband, Eric Schusser, whom she married eight weeks before the breast cancer diagnosis.

By December, she is gone.

The 54-year-old Central Otago photographer died on December 3, 2022, looking out on her garden where she spent her days capturing flowers with her camera.

“Her body was just so beaten up. The cancer was so pervasive … We didn’t manage to start it,” Schusser says.

He’s talking about a drug, Trodelvy, which can slow progression of cancer and extend a person’s life by about five months compared with traditional chemotherapy. But, like many cancer drugs, it is not funded in New Zealand.

When Hope-cross died, the donations were about to hit $25,000. The couple needed more than four times that, to buy Annemarie a few more months with stage four breast cancer. The plan was to begin treatment and pay as they went on.

Hope-cross had spent more than five years on a treadmill of radiation and chemotherapy after a late-stage diagnosis, when it had started to spread. Hope-cross had kept up with screening, it just hadn’t been found. “We had a couple of GPS say to Annemarie, ‘it’s all in your head.’ We didn’t think it was.”

Schusser credits a Dunedin Hospital nurse who performed a physical exam after a “sandy” mammogram and found a lump straight away.

“She probably kept Annemarie alive a lot longer because she really pushed to have a scan on that side and a biopsy. That took a bit of courage on her part.”

Schusser offered to refund the donors, but they agreed a donation should be made in Annemarie’s name to the Breast Cancer Foundation.

According to the Rachel Smalleyfounded initiative The Medicine Gap, New Zealand sits at the bottom of the OECD for per capita spending on medicines.

“Most of these things essentially come down to money,” cancer epidemiology Professor Mark Elwood stated in an editorial on different cancer outcomes in Australia and

New Zealand, published yesterday in the New Zealand Medical Journal. “Countries with greater total health expenditure per capita have higher relative cancer survival rates.”

Australia was ranked fifth in expenditure and second in survival while New Zealand was 15th in health expenditure and 22nd in survival, in a 2019 review of 30 developed countries, Elwood says.

“Good as gold” and out of options

Charles Gribble is at pains to say he’s not in pain. The liver cancer diagnosis came last June, but the 82 year-old former bookbinder still feels

“good as gold”.

“I wouldn’t know there was anything wrong with me,” the 82-year-old says.

The Foxton Beach home where he lives alone is spotless, including the football and golf trophies on the shelf.

He still golfs on Tuesdays and Thursdays, plays twilight bowls and is even dating, with an old childhood friend visiting this week from the UK.

But despite all this, Charles is someone who is out of options.

“The doors have been shut,” his daughter, Gabrielle Gribble, says.

“You hear about people who can’t get certain drugs, but to hear there’s nothing ... it’s just ‘go and live your life’.”

He should have been on a drug trial that would have provided access to medicine called Atezolizumab and Bevacizumab, but when his blood protein level failed to rise he became ineligible in December.

Charles’ cancer is known as hepatocellular carcinoma with grade A cirrhosis, not amenable

to local

Dr George Laking

therapies. This means the treatment options started out extremely limited, then vanished when he no longer qualified for the drug trial.

He received this news at an appointment on January 17, where an oncology registrar told him the disease “will progress from this point”.

He was discharged and offered a referral to palliative care.

“It was ‘bye bye’,” Charles says. The drug Charles was hoping to access through the trial is on a list of 13 treatments the National Party campaigned on funding.

If things go to plan, the drug he needs will be funded for his type of liver cancer. But no timeline has been set. And for Charles, any timeline may be too late.

“We know he’s going to pass away,” Gabrielle Gribble says, tears falling. “I guess I don’t want him to be in pain.”

No timeline for 13 treatments

The National Party campaigned on making 13 new treatments available for cancer. Along with Gribble’s liver cancer treatment, the list includes drug therapies for lung, bowel, bladder, kidney, skin and head and neck cancers, that provide clinical benefits and are already funded in Australia.

Health Minister Dr Shane Reti was unavailable to be interviewed for this story and did not directly answer questions about when they might be available, how many lives the new drugs will save, how costings were worked out and whether resourcing costs are included.

The Post also asked whether he would look at further cuts to health funding if the $300m set aside to fund them over four years is not enough. As it stands, National intends to fund the drugs by reinstating the $5 prescription fee for most people, which would leave net gains of $75m a year. Instead, he provided a statement telling New Zealanders with cancers they aren’t forgotten and empathising with the frustration of people “trying to access the best possible treatment“.

“These cancer medicines were to be funded by targeted co-payment reintroduction, and this is progressing.”

He says he is still taking advice and considering the wider scope of work needed in the cancer diagnosis and treatment space.

Last month Pharmac announced funding of two new cancer treatments, for advanced breast cancer and for blood cancer, which will improve health outcomes for hundreds of New Zealanders, Reti said.

Drug list ‘out of date’ – oncologist

Oncologist Dr Chris Jackson, a professor at Otago University, backs the list of drugs – he was one of the people who wrote it.

The list was a comparison between New Zealand and Australia at the time it was written, he says. “Australia has funded more drugs in the last 18 months and so has New Zealand and the emphasis has changed. So it’s important to make sure this remains the most appropriate list.”

For that reason, he’s urging Reti to review it before funding the medicines. “That list was lifted from a report myself and colleagues wrote about 18 months ago and it will be daft to use that list, that’s out of date,” Jackson says.

“It wouldn’t be a big undertaking to do that ... That’s what any responsible minister should do and I’m pretty certain that’s exactly what they will do.”

Jackson says when the Government announced it would fund the 13 drugs, it showed its hand to drug companies.

“It leaves [Pharmac] completely hamstrung. If you tell a guy you’re going to buy their car off them, they’re not going to drop the price. It would have been much smarter to have announced a funding boost for Pharmac and let them get on with their job, which is to prioritise drugs and get good deals.”

Jackson says no-one should expect movement on the list until at least May, when Pharmac’s annual medicines spending is set at the national Budget.

Rami Rahal, head of the Cancer Control Agency, has warned that most of the 13 treatments don’t have a curative effect and therefore will not impact overall survival rate.

Jackson agrees, but caveats it: “Most cancer drugs don’t cure. To improve the cure rates, most of that is in screening, early detection, surgery and the timing of treatments.”

Oncologist Dr George Laking (Te Whakatōhea) backs the list of treatments, but agrees the Government has undermined Pharmac’s bargaining power by getting involved.

“A big part of the reason for creating Pharmac was to push these rather ghastly decisions back from the public domain, and into a much more technocratic realm,” says Laking, speaking as part of Hei Ahuru Mowai Māori Cancer Leadership Group.

Laking worked for Pharmac’s pharmacology and therapeutics advisory committee until about eight years ago.

He says although the Government has “gone a bit quiet” on the plan to fund the 13 cancer therapies, he is confident it will follow through, “based on their unwavering commitment to the election promises in the first 100 days”.

“I would expect them to be equally diligent in making this happen.”

Some treatments have been declined before

Pharmac would not answer questions on whether the Government’s announcement affected its negotiating power, but did provide information on the application statuses of the 13 treatments National wants to fund.

While six of them are ranked on the agency’s funding wish list, others have no existing application, or have had applications declined in previous years.

One of the treatments, cetuximab, as a first line treatment for bowel cancer, was recommended by an overarching medicines committee to be declined in 2018 and 2020, but recommended by its cancer treatments committee with medium priority in 2019.

The Government also wants to fund this medicine as a second line bowel cancer treatment. Pharmac declined a funding application for this in 2022.

Pharmac has not received applications for nivolumab for head and neck cancer, nivolumab for melanoma, or dabrafenib with trametinib for melanoma.

Another treatment, BRAF/

MEK inhibitors for unresectable melanoma, was also recommended for the decline list in June 2017.

Pharmac’s cancer treatments advisory committee has recommended two others be funded, kidney cancer treatment nivolumab with ipilimumab and pembrolizumab for adjuvant melanoma.

The six treatments already on the funding wish list are: osimertinib for both first and second line therapies for lung cancer, atezolizumab with bevacizumab for liver cancer, nivolumab and axitinib as second-line therapies for kidney cancer, and pembrolizumab as a second line treatment for bladder cancer.

Paying more for less

Jackson says the price of cancer drugs are rising, but the gains are getting smaller. At a College of Surgeons conference last year, Director-general of Health Dr Diana Sarfati laid out why this is and what it means.

“Back in the 50s, we were getting like 50 or 60 new medicines for every billion dollars spent. This is inflation adjusted. Now we’re getting well under one [drug] if we use cancer medicines or cancer, pharmaceuticals as an example,” Sarfati, formerly head of Te Aho o Te Kahu — the Cancer Control Agency, said.

“There is no relationship between a cancer medicine’s efficacy – how good it is, how much benefit it provides, the cost of [research and development], the cost of manufacture – and its price.

“The relationship is all driven by market forces, often out of America. And so we pay more and more for less and less in health, which makes it a hugely complex environment to make sure that our health system is sustainable.’’

Jackson says this is exactly why price control and cost constraints are needed “otherwise you’re writing drug companies a blank cheque”.

So as the number of people with cancer is projected to double over the next two decades, can a country like New Zealand afford to pay undisclosed million-dollar sums for treatments that may buy a few months of life, at the expense of other lives?

Laking stresses we cannot ignore treatments that may provide a shortterm benefit only. “It kind of throws into question, what’s the point of anything we do? Surely the point is that we can all be present in each other’s lives, rather than vanishing in a Logan’s Run type of dystopian future.”

Eric Schusser is still working with his late wife’s photographs, as she was until two days before she died.

Hope-cross was choosing the cover for a photography book, A Garden is a Long Time, which was made with poet Jenny Bornholdt. Had she got Trodelvy in time, the extra five months may have enabled her to see it go to print.

“The idea is that yes, [the drug] might only give you another five months, but there’s so much research all over the world and so many possibilities that suddenly emerge,” Schusser says.

“You’re hoping – OK, you can’t get a cure at the moment. But if you can have enough options to keep you going, with a decent quality of life, then you might get to that point where there is one of those things.”

“It kind of throws into question, what’s the point of anything we do? Surely the point is that we can all be present in each other’s lives, rather than vanishing in a Logan’s Run type of dystopian future.”