Better treatment for myeloma
It was in 2015 when Joy Wilkie thought she had hurt her back. The nagging pain wouldn’t go away.
In fact, she had myeloma, which is an incurable type of blood cancer that starts in the bone marrow and leads to serious complications such as kidney failure, bone pain and infections.
The disease had been ravaging her body for months, including creating a hole in her pelvic bone about the size of a tennis ball, before an MRI scan detected it.
As the disease had spread Joy would have a triple whammy of treatment — radiation therapy, chemotherapy and a stem cell transplant.
“The whole shebang.” Joy, from O¯ taki Gorge, was lucky especially as she had had the disease for a long time before diagnosis, but her body responded well to the treatment, which took a year, leading to a full remission. It’s not a cure though.
“I was super lucky. I wake up grateful every day.”
Joy got on with her life, including lobbying for the best possible care for all myeloma patients in New Zealand.
She is heartened by Pharmac’s moves to widen access to a blood cancer treatment drug lenalidomide.
Lenalidomide is used to treat myeloma which is New Zealand’s second most common blood cancer.
Pharmac is proposing to allow myeloma patients to access subsidised lenalidomide earlier in their treatment.
“Greater gains in quality of life and overall survival can be achieved with the availability of further myeloma treatment options,” Joy said.
“I’ve been in remission since 2016 and always look to see what Australia offers its myeloma patients.
“While the moves by Pharmac are a step in the right direction we still have a way to go in New Zealand’s management of myeloma.”
Pharmac’s proposal, which would come into effect in April, is expected to help around 120 of the 400 New Zealanders diagnosed with myeloma each year.
“The move will make a real difference to many Kiwis living with myeloma, especially those forced to fundraise to pay for the drug privately,” Myeloma New Zealand founder and consultant haematologist Dr Ken Romeril said.
Lenalidomide, which is currently funded for people whose disease has returned twice after initial treatments, would become available for some patients as a ‘maintenance’ treatment, taken orally early in the disease stage, but only after chemotherapy and a stem cell transplant.
Pharmac has also announced widened access to bortezomib, a myeloma treatment currently used for newly diagnosed myeloma patients.
This deal removes restrictions allowing for longer and repeated treatment with bortezomib.
“Pharmac’s proposal to widen the use of lenalidomide and bortezomib would help improve access to drugs we’ve already been using for myeloma in New Zealand for some years,” Dr Romeril said.
“Myeloma follows a relapsing, remitting course and patients can have very individualised responses to treatments due to the complexities of the disease. There is still a substantially high unmet need for patients whose disease has progressed, with a number of very good novel treatments currently awaiting funding by Pharmac.
“We hope to see more good news soon, especially regarding drugs like daratumumab and carfilzomib.
“Although incurable, the innovations we’re seeing will mean we can treat this as a chronic illness instead of a terminal one.”
However, not everyone is as pleased with the proposal, saying the deal doesn’t go far enough, especially for those whose disease is longer standing. Patients who weren’t suitable for stem cell transplant will also be ignored, as stem cell transplant is a prerequisite to treatment access under the new proposal.
“It’s a start but what about the people who couldn’t have a transplant, had their transplant outside the time limit or whose disease has already relapsed?” said Tania Crosbie, whose husband Paul was diagnosed with myeloma in 2014.
“We must see faster and better decisions when it comes to modern cancer medicines in New Zealand.
“The current system of rationing by delay is broken.
“I’m pleased to see clinicians given more freedom to utilise drugs like bortezomib and lenalidomide, this is progress, but they’re not new drugs.
“There remains a big gap for patients whose disease has relapsed, Pharmac has applications for three novel drugs that would go a long way towards helping these people.
“When my husband relapses his next line of treatment is thalidomide.
“I think New Zealand can do better than that.”
‘Greater gains in quality of life and overall survival can be achieved with the availability of further myeloma treatment ’ options. Joy Wilkie