In a move welcomed by patient advocacy group Myeloma New Zealand, drug buying agency Pharmac has proposed to widen access to blood cancer treatment lenalidomide (Revlimid). 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.
If approved, the deal would mean that from April 2020, some patients would be able to access subsidised lenalidomide earlier in their course of treatment. Dr Ken Romeril – consultant haematologist and founder of Myeloma New Zealand says “This is important as you often see a better response to novel treatments like lenalidomide when you use them up front. This will make a real difference to many Kiwis, some of who have been forced to fundraise to pay for the drug privately.”
Myeloma New Zealand was one of several patient advocacy groups that marched on Parliament in 2019 presenting petitions demanding an overhaul of New Zealand’s drug funding process and budget.
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. The deal is expected to help around 120 of the 400 New Zealanders diagnosed with myeloma each year.
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. “Together with the lenalidomide proposal, the move by Pharmac would help improve access to drugs we’ve already been using for myeloma in New Zealand for some years” says Dr Romeril.
“There still remains a substantially high unmet need for patients whose disease has progressed. Myeloma follows a relapsing, remitting course and patients can have very individualised responses to treatments due to the complexities of the disease. There are very good novel treatments currently awaiting funding by Pharmac. We still very much need drugs like daratumumab and carfilzomib and hope to see more good news soon. 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.