Myeloma NZ calls on Pharmac to make good on access deal

Myeloma New Zealand is today calling on Pharmac to make good on their proposal to widen access to blood cancer treatment lenalidomide (Revlimid) from April this year, allowing eligible patients access the subsidised drug earlier in their course of treatment.

As one of several groups that marched on Parliament in 2019 presenting petitions demanding an overhaul of New Zealand’s drug funding process and budget, Myeloma New Zealand are advocating for improved treatment access for the country’s second most common blood cancer.

Dr Ken Romeril – consultant haematologist and founder of Myeloma New Zealand says “You often see a better response to novel treatments like lenalidomide when used up front, so we are calling on Pharmac to make good on their proposal and allow myeloma patients to access subsidised lenalidomide earlier in their treatment.

“The move will make a real difference to many Kiwis living with myeloma, especially those forced to fundraise to pay for the drug privately,” said Dr Romeril.

The deal is expected to help around 120 of the 400 New Zealanders diagnosed with myeloma each year. Myeloma 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.

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.

In a separate move, 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” says Dr Romeril.

“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,” says Dr Romeril.

Joy Wilkie, who has lived with myeloma for four years, is thrilled with the move to improve the management of myeloma in New Zealand, which is falling behind the rest of the world.

“Greater gains in quality of life and overall survival can be achieved with the availability of further myeloma treatment options. 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.”

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? 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,” says Tania Crosbie, whose husband Paul was diagnosed with myeloma in 2014.

“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,” says Mrs Crosbie.

This story was originally published on Voxy