Pharmac not funding drugs for trial a ‘tragedy’, says health leader

Wednesday, 7 June 2023

Catherine Wilson was diagnosed with acute myeloid leukaemia 30 years ago.

An award-winning doctor, a cancer survivor and globally successful actor Sir Sam Neill are calling on Pharmac to fund standard leukaemia treatment so New Zealand can continue to take part in international drug trials.

Catherine Wilson was a part of an international clinical trial 30 years ago that saved her life and is devastated to hear Pharmac is no longer funding the standard treatment needed for the control group of a drug trial for treating acute leukaemia..

This means New Zealand can not take part in the next UK-based National Cancer Research Institute (NCRI) trial.

Neill, who is being treated for stage-three blood cancer, has weighed in on the issue in a letter to the select committee, about the importance of New Zealand being able to take part in cutting-edge clinical trials.

Catherine Wilson took part in an international clinical trial 30 years ago that saved her life.

Having benefited in the last 12 months from some “new and transformative therapy,” Neill wrote that the issue was personal.

“It is so important that New Zealanders are able to access new, emerging and effective cancer treatments that are the standard of care in other parts of the world,” he wrote.

Actor Sir Sam Neill, who is being treated for stage-three blood cancer, says New Zealanders should be able to access care which is standard in other parts of the world.

Pharmac chief medical officer Dr David Hughes said midostaurin, the drug necessary for the trial, had been ranked on their options for investment list, which meant it was a medicine Pharmac “would like to” fund.

However, Dr Ruth Spearing - who has been made a Companion of the New Zealand Order of Merit for her services to haematology – said that bythe time the drug was funded the international trial would be closed.

She has led internationally recognised research into blood cancers for more than 30 years and said it would be a “tragedy” if New Zealand could no longer take part in such trials.

Spearing was Wilson’s doctor when during a weekend in January 1993, the 25-year-old noticed her left thigh was sore after playing netball. Not thinking it was serious she did not see a doctor until the following Tuesday, who noticed her left leg was bigger than her right. She was taken straight to Christchurch Hospital wheretests revealed she had acute promyelocytic leukaemia.

At the time, some patients were dying within days of diagnosis due to excess clotting and bleeding.

Spearing said this cancer had “a very poor prognosis” until the Chinese found a treatment used for acne (All Trans Retinoic Acid - ATRA) had an unexpected effect on the leukaemic cells of acute promyelocytic leukaemia.

International studies found the high early death rate was dramatically reduced, with improved long term survival. Spearing said that the UK’s Medical Research Council (MRC) incorporated ATRA into their next trial and as NZ had joined the MRC’s clinician-initiated haematology trials in 1989, it was given access to this new drug.

Luckily for Wilson it had just begun when she was diagnosed, so she was able to take part.

Wilson had been with her now husband Craig for only three months when she was diagnosed. “There was a lazyboy chair in my [hospital] room, and he just slept on that for the first entire week, he didn’t leave me.”

At the end of that first week, Craig dropped to his knee and asked Wilson to marry him.

“I wasn’t looking that great. [It] made me want to survive to get married, it gave me more to work for,” Wilson said.

Wilson was told had she not had the new trial treatment she would have died within two to three days. “I know it doesn’t sound lucky what I got, but I was so lucky to be included in the trial as one of the first patients.”

By March that same year, Wilson was in remission and by the end of May her intensive treatment was finished. In November, she married Craig, her “superhero” and they had two daughters, Hayley and Tyler. Hayley was given the middle name Ruth, after Spearing.

Wilson said she was “living proof” that trials saved lives and she felt “very emotional” other patients might not be given the opportunity.

“I wouldn’t be here without it, my daughters wouldn’t be here and it makes me feel so emotional the thought of somebody else missing out on what I was lucky enough to be a part of.”

As a result of the most recent UK acute myeloid leukaemia trial New Zealand took part in, New Zealand got $4.5 million of now FDA-approved drugs and $76,000 of free molecular tests.