Libby Clark doesn't know how to tell her young children their father may soon not be around.
She's sought professional advice on how to have that conversation but it's a conversation she is putting aside for now.
"We're not having that discussion with the children yet as we haven't given up hope yet," said the west Auckland mum of four.
Her 48-year-old husband Simon has multiple myeloma. It's the second most common blood cancer in New Zealand.
In late 2021, Simon went to the doctor complaining of pain.
It was dismissed as nothing serious but, not long before Christmas, Simon was back at the doctors. This time blood tests were ordered.
"He got a call from the doctor at around 10pm on December 23, 2021, telling him to get straight to the hospital. I had to drop him at Waitakere Hospital as COVID restrictions were in place.
"The next day Simon was told he had what was likely to be multiple myeloma and transferred to North Shore Hospital," said Libby.
He was officially diagnosed on Christmas Day.
"At the time our twins were days away from turning 4. He spent around three weeks in hospital and started chemo," said Libby.
Last year Simon had two stem cell transplants. Libby said the first one went well but after the second one his blood results were not good.
This year they've been trying to treat the cancer with chemo and a funded myeloma drug but, several months ago, they were told his blood results were no longer stable.
Simon has tried the unfunded drug pomalidomide but Libby said it doesn't look like it's doing the job, and they may have to use another unfunded medicine - daratumumab.
Daratumumab is funded in at least 49 countries around the world - but not in New Zealand.
It costs about $220,000 to privately fund it for the first year of treatment. After that it costs about $120,000 a year.
Because of his health, Simon can no longer work as an IT consultant.
"I know we are only buying time. But I'd like my kids to try and remember him," said Libby. "They are so young.
"At the moment I think Simon has 6-12 months left, 12 months if we're lucky. It's devastating.
"He deserves to live longer to be with his kids," she said.
Their twins will soon turn 6 while their youngest is 4. They also have a 15-year-old son who is fully aware of what is happening to his dad.
Libby describes Simon - who she has been with for 24 years - as an amazing husband and father.
"Simon is a really smart guy. He has a dry sense of humour.
"He's just awesome. Despite being sick he's always tried to keep life going as normal for the kids.
"He tries to help out when he can with kindy and school runs. He tries to keep up but he's exhausted with what his body is going through," she said.
The Clark family said they are incredibly grateful for money donated to their Givealittle page, community support and fundraising as well as the fundraising efforts from all their family members.
Fighting to save her brother
In the still of night, Lisa Clark's mind is racing.
Sleep is hard to come by as she's constantly thinking of new ways to help her little brother Simon.
"Simon and I have always been very close, very tight. He was always the perfect child.
"He's incredibly bright. He warms your heart. He is perfect in my eyes.
"My brain can't accept he has a chink in the armour."
Through many tears, Lisa speaks about how hard it was to watch Simon in pain while she visited him in hospital.
"I remember walking into his room and it bowled me over like a tonne of bricks. He was as sick as a dog lying in that bed.
"I'd take a chilly bin of ice blocks to him as that's what he wanted," she said.
She describes her brother as a proud, humble man who would never have wanted a Givealittle page.
But she said he's also a fighter who wants to live for his children. She wants Simon to have more memories with his children.
Lisa described her brother as a huge Warriors fan. Simon has always taken his eldest to the home games. She wants him to be able to do that again next season.
The Clark family desperately want to have enough money to fund Daratumumab and Lisa won't stop until she knows she's done everything she can to help Simon.
So far, she's raised money by collecting aluminum cans to take to a scrap metal yard.
"I have collection bins at my workplace. People put their cans in them and I then take them to the scrap metal yard," said Lisa.
"Some of the staff go out for walks and pick them up off the road.
"I asked Whittaker's if they would help with donations. Then a big box of chocolate blocks arrived which I've used for fundraising too," she said.
But the expensive cost of daratumumab means they need more money.
"I know that the $200,000 he needs is a lot of money. It's an amount we can't come up with ourselves. "So, I flipped it 180 degrees and I thought, '$5 is a smaller amount - that's doable.' But I need 40,000 people to give $5 each.
"My brain keeps saying: '$5 drive to keep Simon alive,'" Lisa said.
Lisa said the family is prepared to pay what they can and use what they've raised for the medicine but at the moment it's not enough.
There's been lots of tears for Lisa who said she sometimes just wants to scream from the top of a mountain.
"I love him to bits. I want to see him turn 50.
"We're good people. We've worked all our lives and now we just need help."
Lisa said she was not giving up.
"It's a continual, emotional rollercoaster but hope dies last."
Auckland haematologist calls out the Government
The Government needs to fund Pharmac better, according to University of Auckland associate professor and Auckland City Hospital haematologist Rodger Tiedemann.
Dr Tiedemann said past governments have "neglected patients with cancer" and that for a first world country, we're at the "bottom of the second world" in terms of medicine purchasing.
He said the new Government needs to sort it out.
Some of his patients have moved to Australia or the UK to have access to daratumumab. Others are self-funding it.
Many don't have that option.
He said the response rate to daratumumab is very good.
In combination with another drug, using daratumumab has shown to on average, control a patient's myeloma for around five years. If it's used later in a patient's illness, the benefit is less, according to Dr Tiedemann.
Since arriving from Canada last year, Dr Tiedemann has been researching the funding of medicines in New Zealand.
From 2011 to 2020, New Zealand funded about one third of the new medicines that were funded in Australia, he said.
"Our expenditure on new medicines is way behind. I mean way, way behind other countries.
"There is a real gap in the funding of new medicines in New Zealand. We need to plug that gap.
"Modern medicine requires modern medicines. Governments have dragged their feet and the situation has got worse and this new government needs to address it.
"The buck stops with the Government. Patients are missing out and dying as a consequence of this.
"It's heartbreaking. I want to do the best for my patients. I understand there's limits but where the New Zealand Government has placed those limits is appalling," Dr Tiedemann said.
'It could be years'
Myeloma New Zealand Trustee and myeloma patient, Nichola Oakenfull, said about 3000 New Zealanders are living with myeloma and around 400 are diagnosed each year.
Oakenfull said estimates show about 260-290 New Zealanders need daratumumab every year.
She said it is completely unclear when this medicine could be funded.
"Pharmac has it ranked as a high priority and says they would fund it if they have sufficient budget. We have no idea when that would be. It could be years.
"Newer treatments like daratumumab are easier to tolerate than older drugs like thalidomide and cyclophosphamide. They provide effective treatment for longer and allow patients to live a more normal life, with longer times between relapse," said Oakenfull.
'Frustrated and deeply disappointed'
A spokesperson for daratumumab manufacturer Janssen said it's frustrated and deeply disappointed daratumumab is not currently funded in New Zealand.
"The therapy has been under consideration by Pharmac for six years," said the spokesperson.
"Over the last decade, there have been major advancements in treatments for myeloma. Despite this, not one new medicine has been reimbursed in NZ over nine years. Over that same period, the Australian government has funded 10 new medicines or combination treatments for myeloma.
"The New Zealand Government now has an opportunity to make a positive difference for myeloma patients by funding daratumumab, which is universally accepted as the standard of care in multiple myeloma and is available in at least 49 other countries around the world," said Janssen.
Pharmac response
Adrienne Martin, Pharmac's acting director of pharmaceuticals, said the organisation empathises with New Zealanders living with cancer and their whānau that are supporting them.
"Pharmac is considering a number of funding applications for daratumumab for the treatment of relapsed or refractory multiple myeloma. It is ranked on our options for investment list, which means it is a treatment we would like to fund.
"Unfortunately, Pharmac is unable to give a definitive timeframe for if, or when, a decision to fund daratumumab will be made. We would love to fund every medicine for every condition but unfortunately that's not possible," she said.
Martin said Pharmac currently funds several treatments for people with multiple myeloma including thalidomide, bortezomib and lenalidomide.
Pharmac is also considering other treatments like pomalidomide and carfilzomib for the treatment of relapsed or refractory multiple myeloma, both of which are ranked on our options for investment list.
In August, Pharmac announced it was inviting proposals for the supply of lenalidomide and pomalidomide for use in the treatment of multiple myeloma.
Plea to the Government and Pharmac
Libby Clark has a simple message for the new Government.
"Please give more money to Pharmac so my husband can access a drug that so many other people in OECD countries freely can," she said.
Lisa Clark said her brother Simon doesn't deserve to have a price tag attached to him.
"He's not just a number. He's not just a statistic. He's my brother.
"I want to see the human side of Pharmac. How can they stand there and look at my nephews and niece and say sorry we can't supply the drug to keep your father alive because of money."
You can find the Givealittle and Facebook pages for Simon in the links here and here.
If you have a story you want to share, please contact our journalist at dianna.vezich@wbd.com
