Dr Rodger Tiedemann, Associate Professor of Medicine at University of Auckland and consultant haematologist, speaks about the lack of funding of Pharmac.
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.
* New Zealanders have been excluded from much of that progress, however, because of a lack of funded medicines, including a proven drug called daratumumab.
* Pharmac wants to fund daratumumab and is talking to its supplier. Meanwhile, patients including Christchurch retiree Maureen King are taking desperate measures.
A Christchurch family are considering uprooting their lives and moving to Australia to access the blood cancer drug their mum needs to stay alive.
Maureen King, 69, has multiple myeloma and will soon run out of publicly funded treatment options.
The next obvious treatment is a proven drug called daratumumab, which has been funded in most other developed countries for years and could keep her alive for years longer.
Pharmac wants to fund it but has lacked the budget. Hopes were raised in June when the Government announced an extra $604 million over four years for Pharmac but many of the drugs that will be funded are yet to be confirmed.
King discovered she had a precursor to blood cancer after undergoing final medical testing to donate a kidney – an act of kindness she settled upon after seeing her mother struggle with reduced kidney function.
The transplant was abandoned and King developed myeloma, which she has had for seven years.
The disease is incurable but it can be kept below detectable levels (remission) for years by treatment and medicines. Each drug combination eventually stops working and, when that happens, a patient switches to another option.
Maureen King and her family on a trip to Auckland. From left: her granddaughter Elsie, daughter Brydie, Maureen, granddaughter Natalia and son Alexander. Photo / Supplied
In the past decade, newer medicines have greatly increased life expectancy and more are being released and developed. New Zealanders have been largely excluded from that revolution, however, because of a lack of funded drugs.
This month King started on the last available publicly funded drug, pomalidomide, which could keep her alive for about 18 months.
The next option, daratumumab, costs more than $100,000 a year privately. The family have started a Givealittle page, but Maureen’s son Alexander King, 36, is also looking into the logistics of shifting to Australia so she can access the drug for free.
A handful of other Kiwi patients have made such a radical move.
“Mum would only go if the immediate family did too – myself, my sister, my two nieces [aged 13 and 18], my dad, my partner and the dog, we would all relocate our lives over there,” Alexander told the Herald.
That would involve resigning from jobs – Alexander is a barber and his sister Brydie King, 37, is an early childhood teacher – and rehoming other pets, including a beloved cat and chickens.
Their father and Maureen’s former partner, Jeff King, suffered a major stroke in his 20s and is living in a home owned by Maureen in Nelson. That may have to be sold and Jeff would shift to Australia too.
They don’t have relatives or support there, but are determined to do whatever it takes for Maureen, who Alexander said was their “rock”.
“We have our life challenges already. Dad is actually more sick than my mum, he is quite hard to communicate with, but we are all still extremely close. Mum’s the one who is always there, and we always go to.”
Maureen, who before retirement was an office manager at an aged care facility, said her prognosis without daratumumab was scary, but having the support of her family meant the world.
“I’m not going over there without them. I don’t want to have extra time if I’m by myself.”
The King clan. From left: Alexander, Elsie holding Daisy the dog, Brydie, Jeff and Maureen. Photo / Supplied
Pharmac’s acting manager for pharmaceuticals, Logan Heyes, said the drug-buying agency was continuing to talk to Janssen Pharmaceuticals, the supplier of daratumumab.
“However, at this stage, we are unable to confirm if or when daratumumab could be progressed for funding.
“While some medicines may be available in other countries, the funding and reimbursement systems are often not comparable. New Zealand must make its own decisions, carefully assessing the available evidence and thinking about medicines use in the New Zealand health context.”
Pharmac recently widened access to lenalidomide and funded pomalidomide for myeloma and other blood disorder patients, which will benefit about 4000 people over five years.
It has recently funded Keytruda for Hodgkin lymphoma, and – announced this week and hailed as more evidence of widening medicines access by Associate Health Minister David Seymour – bendamustine for relapsed or refractory chronic lymphocytic leukaemia.
Dr Ruth Spearing, a leading haematologist and medical researcher who diagnosed King, said daratumumab reduced both the risk of relapse and the chance of dying by 65%.
It had been under consideration by Pharmac for seven years and was funded in almost all countries in Europe, including those with a GDP considerably lower than New Zealand’s.
She questioned why the Government was willing to cut excise tax for heated tobacco products when that money could fund daratumumab and many other medicines.
Spearing said the lack of medicine funding meant there were fewer cutting-edge trials for better drugs in New Zealand because participants needed to have had treatment considered standard overseas.
That also meant fewer treatment options and a loss of revenue. Numerous public haematology positions were funded through money received from international clinical trials.
Tim Edmonds, chief executive of Leukaemia & Blood Cancer NZ, said he had spoken to many patients like the Kings, who were facing “incredibly difficult decisions” because of the uncertainty around funding.
Barbara Horne, chair of the patient group Myeloma NZ, said it was heartbreaking to hear about the desperate measures New Zealanders were forced into, such as asking friends, family and the public for donations or moving overseas.
“We are hopeful the uplift in budget for Pharmac could have meaningful change for myeloma patients because medicine funding has real life-and-death impacts on patients and loved ones.”
That includes Maureen King.
“Once Mum’s off the pomalidomide, she’s kind of in limbo where you don’t know what happens or how long she’s got,” Alexander said. “We are just praying for a miracle.”
