Honoured doc blames ‘inferior’ NZ health on ‘glacial’ Pharmac
Time is running out for haematologist Ken Romeril to fulfil his dream and level the playing field when it comes to treating Kiwi blood cancer patients. Kevin Norquay reports.
Dr Ken Romeril is thin of leg and of hair. After being made an MNZM for almost 50 years of service to haemotology, cancer now has him pinned to the canvas.
Terminally ill, seated at the dining room table in his Wellington apartment high above the bustle of life on Willis St, Romeril smiles at the irony of his plight, but he doesn’t want to talk about it.
He is fired up about multiple myeloma, an incurable blood cancer that lives in the bone marrow, often affecting multiple sites in the body. The second-most prevalent blood cancer here after non-Hodgkin’s lymphoma, patients experience pain from the skull, spine, hips, ribs and shoulders.
In 2016, Romeril set up charitable trust Myeloma New Zealand to bring more attention to a disease that hits Ma¯ ori and Pasifika harder and sooner. He’s been chief executive, even after retirement from clinical practice. He also set up the Wellington HIV Medicine Unit and introduced
HIV viral load tests, spending more than a decade looking after HIV patients.
His MNZM investiture is on May 3, with family returning from London and Sydney to be there.
His table is covered with myeloma-related documents, graphs and letters.
‘‘In the past six years or so there have been a host of new myeloma drugs which have been extensively trialled and have then entered mainstream therapy in the US and the UK,’’ he says.
And new drugs to New Zealand over that time? Not one.
After New Year’s Honours for his work, he now fears he could die without seeing a single new myeloma-fighting drug added to those funded by Pharmac, the government drug-buying agency he labels as ‘‘glacial’’.
Deputy Prime Minister Grant Robertson has thanked him for his HIV work, he says. With myeloma, Romeril has also been to the top of the mountain; he had a meeting with Health Minister Andrew Little that he found frustrating.
Little himself was diagnosed with early-stage prostate cancer in 2009, at the age of 43, and said in 2017 that experience gave him ‘‘a stronger determination to strive for a system that is genuinely fair for everyone’’.
Five years ago, Australia and New Zealand had ‘‘fairly equivalent outcomes because we’re using similar drugs’’, but that data is now five years out of date.
‘‘We’re thinking if they have all these better drugs, more active trials, and more funded drugs, then their outcomes are going to be better,’’ he says. ‘‘We are constantly talking about how our drug budget is down at about 20 in the OECD rankings. It is then absolutely galling to hear the politicians go on about how New Zealand has a world-class health service. It is just untrue.’’
Myeloma is increasing in incidence, with the Ma¯ oriPasifika population seeming to present earlier than Pa¯ keha¯ , according to a myeloma registry, run out of Monash University in Melbourne.
‘‘[My colleague] Hillary Blacklock did some drilling down on genetic signatures in the
Ma¯ ori-Pasifika and there seems to be an increase in what’s called adverse genetic or bad risk signatures,’’ he says. ‘‘This may partly explain why they don’t respond to treatment as well.
They get it more, it is definitely increasing, and with Ma¯ ori it seems to respond less in a few cases.’’
Romeril estimates 3000 people are living with myeloma, and the average length of survival was seven to eight years. When he first got interested in the 1970s, it was more like two years.
‘‘We’ve certainly got a number of people that are living longer than 10 years, so we’re saying it is now a chronic illness, similar to diabetes or heart failure. So there’s just a bit of a change in thinking.’’
Former United States
Secretary of State Colin Powell (2021) and Australian cricket fast bowler Max Walker (2016) died of multiple myeloma.
Pharmac director of operations Lisa Williams said medicines were just one tool for treatment, as most cancers are controlled using surgery, chemotherapy, and radiotherapy.
‘‘We acknowledge the challenges for patients diagnosed with multiple myeloma and understand the concerns from the community regarding the treatment and care of these patients,’’ she says.
Pharmac was ‘‘currently considering’’ several applications for myeloma treatment.
‘‘Pomalidomide, carfilzomib and daratumumab have been ranked on our Options for Investment list, which means they are medicines that we would like to fund, when there is budget available,’’ she said.
All three drugs are funded in Australia.
They were also being assessed for use later in disease progression and with lenalidomide in the first line setting, had received positive recommendations from the advisory committees.
Ranking them as options for investment would be the next step.
‘‘We operate on a fixed budget set by the government. There will always be more medicines we want to fund than we can afford.
This means we have to make difficult choices about what medicines are funded,’’ Williams said.
South Auckland programme administrator, mother of five Marama Ihimaera-Robinson (Nga¯ puhi) is one of the 3000 getting on with life with myeloma, though it’s not life as most of us know it.
Diagnosed in 2020 when she went in for a hysterectomy, she is now in deep remission, or so she was told on Thursday.
That good news came after several months of chemo, a stem cell transplant in 2021, a bad reaction to one of the drugs used, a ruined appetite, three trips back to hospital, feeding tubes and persistent lesions, small rashes all over her skin.
But remission is not the same as cured. There is no cure. So, as you do, Ihimaera-Robinson has searched for the secrets of myeloma and solutions to it online.
And she’s found that she’d be better off being treated in Australia, where more drugs are funded, than in her native land. One of the five used here – lenalidomide – she now avoids, after reacting badly to it.
‘‘I’ve been reading posts on the Facebook page both for myeloma and New Zealand Cancer Society and I’ve seen all the drugs that are available in Australia? Why can’t we have those drugs funded by Pharmac as well.’’
Nelson man Trevor Gately found it cheaper to import his myeloma drugs from India.
For Ihimaera-Robinson, finding how many drugs were funded in Australia was a surprise up there with the one she got when told she had myeloma.
‘‘I’d been having a lot of bleeding, and they just couldn’t figure out why. So I was actually booked on for a hysterectomy,’’ she tells Sunday News.
On the morning of her operation the doctor cancelled it, and said they would be in contact. She went in expecting a reschedule, and came out stunned.
‘‘My husband and my three babies were waiting in the car, thinking OK, well, they must be gonna put me in for another appointment, and then they tell me that I’ve got cancer.’’
She’d never heard of myeloma.
‘‘Melanoma?’’, she asked the medics.
After chemo knocked back the number of myeloma cells in the bone marrow, she had a stem cell transplant, being given new, healthy blood-forming stem cells. It was hard, she says.
‘‘About day four, everything just well … knocks your boots in. I was off food and everything. They ended up putting in a feeding tube, that didn’t do anything for me, so they removed that a couple of days later.
‘‘So I promised I was going to eat – to force myself. My family brought in my favourite foods, but everything had just changed – everything tasted like metal. My favourite foods made me vomit.
‘‘Even now a year after … I mean I love my kina, I can’t stomach it any more.’’
She is now back at work, thankful her employers had been supportive.
In December, Little released the interim report into Pharmac. That report – the first since Pharmac was established – found issues relating to transparency of decisionmaking, and fairness and equity of outcomes.
Initial assessments indicated Pharmac was underperforming in helping to remove inequitable health outcomes, and its prioritisation approach appeared to disadvantage Ma¯ ori, Pacific people, disabled people and those with rare disorders.
The final review is yet to be released.
In the meantime, Romeril talks of myeloma patients ringing him in tears, and wonders if that reflects the woes of the health system in general.
‘‘Why should we have inferior treatment?’’ he says.
‘It is then absolutely galling to hear the politicians go on about how New Zealand has a world-class health service. It is just untrue.’ DR KEN ROMERIL