The bookish boy from Beirut tackling cancer

Saturday, 13 January 2024

There is a quiet, measured confidence about the Cancer Control Agency’s Rami Rahal, not unlike another leader who used to share these floors inside the Ministry of Health’s headquarters.

But unlike Dr Ashley Bloomfield, you also won’t find Rahal’s face on tea towels and you’ve probably never heard of him.

This is the first interview he’s done with major media since he took the wheel at the agency, replacing its inaugural leader Dr Diana Sarfati in July.

Rahal is a bookish boy from Beirut, with a curly Canadian accent, descended from doctors but not one himself. Yet here he is leading a major health agency in New Zealand.

Rahal has come from Toronto, where he spent more than a decade at the Canadian Partnership Against Cancer (CPAC), most recently as vice president. CPAC is effectively the CCA’s equivalent – albeit in a country with 37 times the land mass as Aotearoa and almost 10 times the population.

The boy from Beirut

Rahal was born in Beirut and raised by a Lebanese father and a Palestinian mother during the Lebanese Civil War. “We spent a lot of time in Cyprus, which was kind of an oasis of safety during that time.”

By 1985, after a decade of bombs, “my parents decided, we have had enough of the war”.

The war ran for 15 years, ending in 1990.

“We had some close calls as well, just like everybody living there. Missing being bombed by minutes.

“Everybody thought it was going to be the last year and it would just get worse and worse and worse.”

The family fled to Toronto when he was 17, with the idea of never going back. He still has a family home in the south of Beirut, where his doctor grandfather’s clinic remains preserved.

He always knew he wanted to work in health, but on the policy side, not as a doctor.

His work in Canada was focused on working with First Nations and Metis (who have both European and First Nations heritage) leaders to address gaps in care in a way that reflected their cultural needs, an approach he intends to incorporate into his work here.

Because much like in Canada, a gulf exists in New Zealand when it comes to cancer outcomes for European populations and indigenous people, he says.

Unique, for the worst reasons

“We have amongst the highest rates of patients diagnosed in the emergency department with cancer,” Rahal says.

“Their symptoms get so bad that they go to ED and that’s where doctors discover they have cancer.”

He is referring to international research published in The Lancet, in which NZ has (by far) the highest rates of patients diagnosed with cancer in ED compared with the UK, Canada, Australia, Norway and Denmark. This includes 50% of liver cancers, 60% of pancreatic cancers and 51% of lung cancers.

Zoom in and there are ethnic disparities on top of that. The CCA intends to publish a report on this later this year, but Rahal reveals the key finding.

“Within New Zealand, Māori and Pasifika have a much higher chance of being diagnosed in the ED. So you have New Zealand already at a disadvantage, then you have Māori and Pasifika at a further disadvantage.”

It all leads to a later, more lethal diagnosis.

“Then even when [Māori and Pasifika] are diagnosed, they are less likely to receive effective treatment. The system is less likely to accommodate their needs … So we have this systematically accumulating disadvantage that arises in every part of the system.”

Is the agency working?

The Cancer Control Agency was set up by the Labour Government in December 2019, with the aim of ensuring any cancer patient gets “world-class cancer care, no matter who they are or where they live”, then Prime Minister Jacinda Ardern said at the time.

Then along came the pandemic, which clinicians said exacerbated the postcode lottery further. In Christchurch, colorectal surgeon Dr Frank Frizelle was having to decide “which patients had the worst cancer” as theatre lists were slashed amid a workforce crisis.

Screening delays led the Breast Cancer Foundation to launch a campaign about the “missing women”, people who were walking around with undiagnosed malignancies..

Despite this, Rahal says the New Zealand cancer system response during the pandemic has been recognised as comprehensive and world leading in many regards.

“All countries have opportunities to learn from that experience. While there are always things that could be improved, in the circumstances faced at the time, the system did exceptionally well.”

Still, about 9500 New Zealanders die from cancer each year and lung cancer is by far most likely to kill, followed by colorectal, breast and prostate cancers.

In 2019, Sarfati, now Director-General of Health, noted a goal to have all cancer survivors facing the same survival rates by 2030.

That’s still the kaupapa (mission), Rahal says. “It is really what motivates our work here- to achieve equity and survival.

“We want to do two things, improve survival overall for the population and reduce the disparities.”

Since its establishment, the agency has had a significant impact on long-standing issues in cancer control, he says.

Guidance it developed to address gaps in funding of cancer medicines led to hundreds of millions of dollars for new drugs.

It developed world-leading tech for sharing relevant cancer data at the point of care, worked to protect cancer care during Covid-19, and is developing guidance to make sure there’s sustainable access to radiation treatment for the next generation.

In 2021, the agency held 13 hui which led to more than 2500 whānau Māori voicing their experiences with cancer and how the system should respond to them.

Rahal says his work in Canada showed him the importance of allowing self-determination for indigenous people in healthcare.

“Any solution has to be developed from the beginning with the guidance and leadership of indigenous communities themselves … as opposed to having a standard solution and trying to shoehorn it to fit the needs of indigenous peoples.”

Rahal says the agency remains committed to: “Fewer cancers, better survival and equity for all.”

Better access to cancer drugs

It’s difficult for New Zealand and its modest economy to keep up with larger countries like Australia when it comes to supply cancer drugs, particularly those with new technology, Rahal says.

“We have to look at what an investment in lung cancer screening can deliver in terms of reductions in mortality improvements and survival overall, versus what an expensive new treatment technology or medicine can provide.

“There are trade offs in every decision. And we want to make sure that we’re making the right trade offs.”

Rahal appreciates those trade-offs become families forced to start GiveaLittle pages, like Wellington whānau the Hayes, who in November learned the only drug that would work for dad Simon’s lymphoma was an immunotherapy in Australia that would cost $700,000.

Simon Hayes just missed out on accessing immunotherapy for free in New Zealand through a trial being run by the Malaghan Institute in Wellington.

So far the trial has treated at least 21 New Zealanders who had no options left. Within three months, half of them had no sign of cancer.

There is no way to access CAR T-cell therapy in New Zealand outside of the trial, which needs to secure funding to scale up to 60 patients.

Given CAR T-cell therapy is not resilient enough to travel internationally, we must make it here if we want it to be available in New Zealand.

“The [Malaghan] trial is the cornerstone for developing that capability and making it available for cancer patients who can benefit from it. It just takes that time.

It’s estimated between 150 and 170 patients a year could benefit, Rahal says.

“It provides huge potential for cure for a lot of patients who… once their cancer comes back after the initial chemotherapy, there would be no alternative.”

Rahal says there is a formula used to make sure, essentially, we’re not getting ripped off. This is known as the cost per quality adjusted life year (QALY).

A QALY is a year of perfect health, and different countries have different thresholds for what they’ll approve using this mechanism.

“So it has to be minimum, let's say $50,000 per quality adjusted life year or $60,000, or $30,000. And you create that mechanism to be able to make decisions and trade offs between different options.”

The cost per patient to fund CAR T-cell therapy hasn’t been worked out.

Using this formula, the best investment was easily in screening, Rahal says.

“The highest cost or the most cost effective dollars per quality adjusted life here is screening and earlier, by far. You can get a lot more improvements in outcome and reduction in burden of disease by investing in screening and early detection.”

But, crucially: “We should always respect that the need to extend life is important for a lot of people, even if it comes at a cost.”

The likes of the Lancet report suggests there is a “big opportunity in New Zealand to invest in early detection”, Rahal says.

To that end, there was a clear argument to tailor care to account for those who are more at risk of cancer. However you measure this, you reach the same outcome: with indigenous populations more at risk, he says.

“Here’s an interesting thing about equity. A lot of people sort of think it's like a trade off.

“In effect, you actually cannot improve the overall performance of the population without addressing the needs of those who are most vulnerable and most disadvantaged in the system. That is where the opportunity is to raise the bar overall for the country.”