A family is desperately fundraising to cover the costs of unfunded medications required to prolong the life of Simon Clark, who is battling multiple myeloma.
Video / Jason Oxenham
Multiple myeloma, a common blood cancer, is incurable, but can be survived for years with the right treatment and medicines, which have greatly improved. Kiwis have been left out of that progress, because Pharmac hasn’t funded new myeloma drugs for a decade - forcing one family into desperate measures. Nicholas Jones and visual journalist Jason Oxenham report.
Outside Lisa Clark’s home in Huapai are homemade signs, letting people know where to drop aluminium cans.
She sells whatever comes in as scrap to raise money for the blood cancer medicine her brother Simon needs to stay alive.
That drug - daratumumab - isn’t funded by Pharmac, despite being a routine and highly effective treatment for myeloma cancer in 49 other developed countries.
The private cost is almost $240,000 for the first year, which roughly halves in subsequent years because fewer doses are needed.
The extended Clark family raised tens of thousands of dollars through raffles, fundraisers and donations.
Progress stalled and, in desperation, Lisa set up can collection stations at her workplace.
Word spread, and now businesses collect and donate cans - one of them rewards customers who bring them in with garlic bread - and people drop them at her gate.
Simon Clark’s sister, Lisa Clark, collects aluminium cans to raise money for his blood cancer medicine. Photo / Jason Oxenham
Somebody donated an aluminium dinghy. In the past few weeks, contacts have sourced some 52,000 damaged and surplus cans from factories and businesses.
“I’m getting to be known as the can lady,” says Lisa, whose energy, positivity and emotion power the snowballing scrap metal drive.
“No can’s safe if I am around.”
On a humid Auckland morning, we accompany a drop-off to Waitākere Scrap Metals.
As wool sacks of cans are wedged into her Nissan Navara ute, somebody drops black rubbish bags out front, tooting as they drive away.
“Crushed, too,” says a delighted Lisa. “This is better than Christmas.”
The yard owner, Andy Stankovich (a world-class Elvis tribute artist - posters of The King overlook twisted metal and machinery) knows the family and cause.
What is myeloma, and why are NZ patients dying too soon?
Myeloma, also known as multiple myeloma, is the second most diagnosed blood cancer in New Zealand, with about 400 new cases a year. Māori and Pasifika suffer higher rates.
Currently incurable, it can be kept below detectable levels (remission) for years by treatment and medicines.
Each combination of drugs eventually stops working and myeloma returns, more aggressively. When that happens, a patient switches to another option.
These lines of defence have strengthened and multiplied in the past decade. Newer medicines have greatly increased life expectancy from diagnosis, and more are being released and developed.
New Zealanders have been excluded from that revolution, however, because no new myeloma drugs have been funded since 2014.
Proven medicines, including daratumumab, pomalidomide and carfilzomib, are on Pharmac’s “options for investment” list, meaning the government drug-buying agency accepts their benefit and wants to fund them, but doesn’t have the budget.
His letter was endorsed by the Haematology Society, Leukaemia & Blood Cancer NZ, Myeloma NZ, and co-signed by 33 haematologists (doctors specialising in blood-related disease), working across all major hospitals.
Daratumumab is the most pressing need, Tiedemann wrote.
“People’s lives are being needlessly sacrificed, and the accompanying anguish is vast. By one careful estimate, delays in daratumumab funding in New Zealand by Pharmac since 2017 have cost 1,410 Kiwis an average of 3 years of life each,” the letter stated.
“Myeloma patients and their families live in dread of the next relapse. At the same time, for clinicians it is deeply distressing to have to tell cancer patients that there are effective treatments available in many other countries, but not in New Zealand.”
Simon Clark had a shock diagnosis of multiple myeloma on Christmas Day 2021. Photo / Jason Oxenham
That group includes Simon Clark. His cancer announced itself in September 2021, in the form of severe rib pain. After repeat GP visits, an X-ray revealed a rib fracture - strange, because he’d had no trauma in the area.
He lost his appetite, dropped weight and slept during the day - alarming wife Libby, who’d almost never seen him take time off work as a self-employed IT consultant.
“We finally got him to the doctor just before Christmas. They sent his bloods, and rang that night and said, ‘you’ve got to go to the hospital’,” Libby says.
Simon was officially diagnosed on Christmas Day.
His plasma cells - a type of white blood cell that helps fight infection - had become cancerous, and multiplied in bone marrow, the spongy matter in bones where blood cells are produced.
This crowded out healthy cells, including red blood cells that provide oxygen to tissues, white blood cells to fight infection, and platelets, vital to stop bleeding.
As well as the bone marrow, collections of cancerous (myeloma) cells accumulate on the surface of other bones in the body - Simon had lesions on his hips, pelvis and ribs.
About 90 per cent of people have multiple lesions when diagnosed.
Fatal complications from the cancer include infections, kidney failure (the cancer cells produce abnormal antibodies that damage the organs), heart failure, strokes and blood clotting.
Myeloma cells also secrete chemicals that lead to calcium loss in the bone, making them brittle - how Simon’s rib fractured.
Libby split Christmas Day between the kids at home - Ethan was 13 at the time, twins Jacob and Liam were days away from turning 4, and Eleanor was 2 - and North Shore Hospital.
“It was horrendous,” she says. “You’ve got dad in hospital, but I’m trying to pretend to be all excited that Santa’s been.”
Simon was going into renal failure, and on Boxing Day contracted pneumonia. He nearly died, and remembers little but the hallucinations - “Dutch people fighting over Christmas cake”.
When his mind cleared, it processed a new reality. Doctors told him he might live for another six to eight years.
“You have been thinking, am I going to die tonight? Tomorrow? Hearing that was like, ‘I’ve got time to do stuff.’ It sounds weird, but it was sort of like a blessing.”
A gene test revealed his myeloma was aggressive, and he began chemotherapy.
Specialists recommended a stem cell transplant, followed by another within 100 days (a tandem transplant).
Healthy stem cells (special cells that can make copies of themselves) were removed from his bone marrow, and stored.
He was then hit with high-dose chemotherapy, to kill as much cancer as possible, and hopefully put him into remission.
The scorched earth approach destroyed healthy bone marrow, too. Simon’s stored stem cells were returned to his blood to regenerate what was sacrificed.
His immune system was knocked down to nothing, and other side effects - stomach cramps, fatigue, vomiting - were severe, and endured in isolation for three weeks. Libby was his only visitor.
“You’re tired, you get diarrhoea. The second week is just terrible, while your body builds up its immune system again. By three weeks you really want out,” he says.
A blood test measuring levels of a protein associated with myeloma showed “very good partial remission”.
The ordeal was repeated. Follow-up testing showed the myeloma had clung on, halving his life expectancy to three to four years.
Pharmac wants to fund daratumumab (brand name Darzalex), but does not currently have enough money. Photo / Jason Oxenham
It was now up to New Zealand’s outdated medicine regime - bortezomib, thalidomide and the chemotherapy lenalidomide - to control his disease.
Simon began his last government-funded option, lenalidomide, in February last year.
That stopped working after about six months. An unfunded drug, pomalidomide (costing $700 a month) failed.
The next option was daratumumab (brand name Darzalex), which binds to an antigen on myeloma cells, rendering it harmless.
The drug was approved in the US in 2015, and is funded in Australia (since January 2021) the UK (since March 2019), Canada (as early as March 2018 for areas including Ontario) and most of the developed world.
The private price here is crushing: about $240,000 a year (including administration). This drops to about $120,000 in following years, because injections are more frequent at first.
The Clarks were living from Winz cheque to Winz cheque. Simon hasn’t worked since his diagnosis, and Libby, a former legal secretary, is near breaking point looking after him and their four kids.
KiwiBank wouldn’t release equity from their home, so Simon’s sister Megan Johnston kick-started fundraising with a $10,000 donation from a former workmate.
A musician, she organised a concert that raised $4500. More gigs, raffles and events followed, including a 700-person fundraiser at Te Atatū Village Kindergarten.
A Give-a-Little page has had more than 1500 donations, including $4000 from Libby’s former colleague. A stranger gave the same amount.
Lisa sold chocolate donated by Whittaker’s in her workplace, the North Shore Police Station, with give-what-you-want instruction.
“Somebody paid $100 for a peanut slab.”
Another scrap metaller in Silverdale, Tin Men, has dedicated a skip for can drop-offs. A man in her neighbourhood collects them from homes, and crushes them with his kids.
(Simon’s deterioration has shocked other family members. Megan cried driving home from the twins’ birthday on December 29. “I saw him and internally gasped,” she says. “He looked like half the person he was.”)
Five years ago Cheryll lost her husband of almost 48 years, Warren Clark, a well-known local musician, who she misses “every minute of every day”.
Alone at home, her mind won’t rest: what else can she do for their boy?
“Where does a family find $20,000 a month? [The Government] charges GST on that as well…and that drug company must be making a lot of money,” she says.
“I’m 77 and I can’t go out and do all the physical things. But I can sit and knit. I can take the little kids when he has a fever. We’re all doing what we can.”
Cheryll Clark with her granddaughter Eleanor, 4. Photo / Jason Oxenham
The National-led Government’s position on Pharmac/myeloma cancer funding
Before the election, National pledged to fund 13 cancer treatments available in Australia.
Those covered lung, liver, bowel, kidney, bladder, head and neck and skin cancers - but not blood.
After the August announcement Libby’s sister, Katherine Cornish, emailed the party’s health spokesperson Dr Shane Reti.
“[Simon’s] children deserve as many Christmases and birthdays with him as possible,” she told Reti, who is now Health Minister.
“It will break my heart to see my sister Libby lose her life partner. They have been together since she was 20 and she will turn 45 next week. She does not know life without him.”
Reti replied, and pointed out that “I specifically said to camera, for those with blood conditions like myeloma or leukaemia, ‘You are not forgotten’.”
The Cancer Control Agency, hosted within the Ministry of Health, hadn’t done the necessary analysis on the 28 blood cancer treatments that New Zealand lacks, Reti wrote.
Reti told the Herald the agency’s analysis had started, and it “expects further information to be available by the end of 2024”.
“When that’s done, we will be in a position to explore how to progress further.
“I truly do recognise the frustration of people and whānau trying to access the best possible treatment for their loved ones, and the staff and specialists treating them.
“As I’ve said to Simon’s family previously, as a Government, we are adamant New Zealand will lift its cancer management game.”
In the meantime, a handful of patients have moved to Australia and the UK to access daratumumab.
Some have been under the care of Tiedemann, who is also an associate professor in medicine at the University of Auckland’s Leukaemia and Blood Cancer Research Unit.
Most people aren’t in a position to move overseas, he says, or pay privately. They lose their quality of life and die too soon.
“It’s heartbreaking to have patients suffer from progression of their cancer, when in Australia they could be receiving a number of other lines of treatment that would simply put that cancer into remission.”
Daratumumab was regarded as a breakthrough when developed 10 years ago, he says, and clinical trials have substantiated that status.
Used with another drug, lenalidomide, the medicine controls myeloma in newly diagnosed patients for an average of about five years but effectiveness varies, and reduces if used later in a person’s illness, says Tiedemann, who has no financial relationship with its maker, Janssen pharmaceuticals.
An Aucklander, Tiedemann in 2005 moved to the US, working in research at the world-leading Mayo Clinic, and later ran a laboratory and practised in Canada.
He returned to New Zealand in January 2023, and found that publicly funded myeloma treatments were comparable to what was offered in Canada or the UK 10 years ago.
We are many steps behind, he says, lacking treatments that are standard in most western countries, such as daratumumab, while new-generation drugs such as bispecific antibodies and CAR-T cells are enabling another revolution in myeloma treatment.
Some were available during Tiedemann’s last few years in Canada, including through clinical trials, and a growing arsenal meant he had very few patients die.
“I could put patients on one drug, and then on another drug, and another drug - keep them going, and their myeloma was controlled.”
Some projections are that median myeloma patient survival in the US will break the 10-year mark for those diagnosed around 2022. That will likely increase because of newer drugs, but survival data takes years to accumulate.
Pharmac first received an application from Janssen to fund daratumumab in July 2017.
About 270 to 290 New Zealanders could need the drug each year. Negotiations over price are confidential.
A recent review of Pharmac estimated funding the entirety of its “options for investment” list - the 134 medicines and therapies it wants to fund - would cost more than $400 million annually.
The list is confidentially ranked. However, daratumumab offers the highest survival gain of any of the oncology treatments listed, and in November 2021 was recommended with high priority by Pharmac’s expert cancer treatment subcommittee.
Simon Clark is one of hundreds of New Zealanders battling the blood cancer myeloma. Pharmac hasn't funded any new life-extending drugs for the terminal condition for a decade. Photo / Jason Oxenham
New Zealand spends about US$6000 (NZ$9825) per person per year on healthcare, Tiedemann says, around average for OECD countries, and placing us between the UK and Germany, countries we are also close to in terms of income by GDP per person.
However, we spend only 0.44 per cent of GDP on the combined pharmaceutical budget, he says, less than a third of the OECD average.
This directly explains the lower availability of publicly available medicines, Tiedemann says, which “strangles” medical care.
“Germany and the UK reimbursed [funded] 165 and 151 new medicines respectively from 2016-2021. New Zealand reimbursed 17.”
When Pharmac was created in 1993 it made admirable savings by negotiating pharmaceutical contracts at a national level, he says, and was a source of pride.
The model has implementation problems, including being too slow to review medicines, but remains fundamentally sound, Tiedemann believes.
The blame, he says, rests with successive National and Labour-led governments that starved it of enough funding.
Pharmac is currently running a procurement process to understand if it could afford to pay for pomalidomide (the unfunded myeloma medication Simon tried, before he switched to the more expensive daratumumab) and widen access to the chemotherapy lenalidomide.
In terms of daratumumab, the agency says it is “continually engaging” with Janssen “to discuss commercial proposals and provide an update on the progress of the funding applications”.
A spokeswoman for the company, owned by pharmaceutical multinational Johnson & Johnson, defended the bill put to desperate families like the Clarks.
“The price of our medicines fairly reflects the outcomes associated with improvements in time in remission and increased life expectancy, as well as the value associated with long term and ongoing investment in innovation.”
Simon Clark and wife Libby Clark. The family are speaking out about his battle to raise awareness about the blood cancer myeloma and the dearth of funded drugs available in NZ. Photo / Jason Oxenham
Milestone to milestone; clinical trials offer hope
Libby and Simon both attended Auckland’s Avondale College, but, years apart, didn’t meet until an Exponents gig at the Mangawhai Tavern in January 1999.
“He stood out because he’s so tall,” she says. “The girls I was camping with knew him through work. He drove home that night. I said to look me up in the phone book.”
“Even throughout all the chemo he tried to keep life as normal as possible; he’d help get the kids dressed and off to kindy and school,” Libby says.
“I couldn’t have picked a better father for the kids. I just want him around a little bit longer.”
Simon and Libby Clark, in New York in 2004.
That goes for the wider family.
Katherine was 17 when her sister met Simon.
“He’s been a brother to me,” she says. “He’s the strong, silent type, and an acts-of-service guy - he helped me assemble a cot before my daughter was born; if you shift house, he’s the person giving you a hand.”
Simon and Libby have given to the community, including through close involvement in the Te Atatū Peninsula Makerspace (TAP lab) and community patrol, and that’s reflected in the support for them now, Katherine says.
“People who have been recipients of their kindness are happy to have the chance to do something.”
The more than $100,000 raised allowed Simon to begin treatment in December through private provider Canopy Cancer Care.
That covers about 10 weeks’ worth of daratumumab ($9700 a week for the drug itself, plus a “treatment fee”. The cost is frontloaded - injections are weekly for two months, then fortnightly or every three weeks for a period, then monthly.)
Libby and Simon arrive for his fourth dose, after dropping Ethan to a new labouring job and the younger kids to grandma’s. The family cat’s gone missing, adding to the stress (a $700 vet bill is incoming.)
Simon has lost more than 25kg since October. Grey-faced, he sits in the car, summoning the willpower to walk 10 metres to the lift.
His “hello” is hoarse and barely audible (loss of voice is a daratumumab side-effect).
Once he’s in the Lazy-Boy upstairs, injecting the 1800mg of medicine into his stomach takes about six minutes - almost $30 a second.
Simon Clark receives his daratumumab drug treatment for myeloma blood cancer with the aid of clinical nurse specialist Kaveendra Krishna, at a Canopy Cancer Care clinic in Takapuna. Photo / Jason Oxenham
We meet at their home the next day. Jacob and Liam roar with excitement at having visitors, and are calmed with devices and snacks.
A computer chair is brought to the dining table for Simon, whose skinniness makes the wooden variety uncomfortable.
“You can only live milestone to milestone,” he says, in front of walls of family photos.
“You’ve got limited time, but you don’t know how limited that is.
“Eleanor is due to start school in March, she has been looking forward to it for a year. Our eldest is coming up 16, and getting his driver’s licence is an important thing to him.
“I take him out for a couple of sneaky lessons, and he seems to be okay. But it would be good to see him get that.”
Simon is private, and happier chatting about Elon Musk’s Space X or the cricket.
He’s doing this to raise awareness, and is matter-of-fact about his own outlook.
“Maybe once every couple of months you think ‘the end’s coming up’. But I am quite pragmatic, rather than emotional. I tend to be quite logical and work things out. If it’s gonna happen, it’s gonna happen. What can we do in between?”
Simon Clark with his son Ethan, photographed in November 2023. Photo / Belinda Coles Photography
Calls from his public hospital haematologist were missed during our interview. They’re about clinical trials for a new drug, which would be given along with daratumumab or another medicine not funded here.
Known as forimtamig and developed by Roche, the drug belongs to the new class of biological agents known as bispecific antibodies.
While chemotherapies kill growing cells - both cancerous and healthy - these activate normal immune cells (such as T cells) to recognise cancer cells as foreign and destroy them.
“Multiple myeloma and lymphoma are at the cutting edge of the development of these agents, though it is hoped that eventually bispecific antibodies will be developed for many other cancers as well,” says Dr Tiedemann, the local principal investigator for the studies, being run in multiple countries.
“Unfortunately, not all patients are eligible for participation in clinical trials - which have rigorous eligibility requirements - though we do our best to get patients on if we can.”
To be considered, Simon needs better liver function. He and his specialist agree on a gruelling course of chemotherapy and other drugs to clear myeloma deposits.
“Simon has fought a similar regime with the stem cell transplants and he is in good spirits to tackle this one,” Libby wrote in an update to their supporters.
“It’s going to be tough so please send us all your best wishes and prayers.”
Message from the Clarks: Simon and Libby want to offer their gratitude to their family and friends who have given endless support, baked and made meals, looked after the kids, fundraised, and donated money. They would like to thank the community and businesses in Te Atatū Peninsula and beyond for their support in fundraising, and also the friends of friends and the total strangers who have donated and offered words of encouragement.
