Graham Adams

When your GP tells you your haematologist’s report “makes for grim reading”, you know you’re in trouble. I had that experience in early 2015 — two years after having been diagnosed with chronic lymphocytic leukaemia (CLL) and shortly after being given the news I also had chromosome 17p deletion, the dreaded genetic marker no CLL patient wants to harbour.

The deletion of 17p has traditionally meant a very poor prognosis. Chemotherapy-based treatments simply don’t work for the vast majority of such CLL patients and that was all that was on offer through the public health system when I needed treatment. I have read that its success rate is as low as five per cent.

I realised I was unlikely to get out of this predicament alive unless I had an alternative to chemotherapy. I had heard about the new targeted drugs like ibrutinib that seemed to take 17p deletion in their stride, but I knew they weren’t publicly funded in New Zealand — even though they were already being heralded as a “game-changer” for certain blood cancers, including high-risk CLL patients like me.

So I decided, in consultation with my haematologist, that I would use up a chunk of my retirement savings to pay for a year’s supply of ibrutinib at $10,000 a month in preparation for a stem cell transplant.

And then, just as I was about to make my first $10,000 payment, I had the good fortune to learn of a clinical trial in Auckland that was designed to pit ibrutinib and obinutuzumab against an old chemotherapy agent, chlorambucil, also paired with obinutuzumab.

I was lucky enough to be accepted as a patient but I ended up on the arm without ibrutinib and you’d have to say the chlorambucil-obinutuzumab regimen wasn’t a raging success. My lymphocyte count dropped sharply from around 200 to 12 but my lymph nodes contracted only by 20 per cent. My bone marrow was still stuffed with CLL cells.

Within a month of finishing the six-month trial, my lymphocyte count had shot up, and the lymph nodes in my neck had swollen to once again make me look like a chipmunk.

At that point, under the terms of the clinical trial, I was eligible for free access to ibrutinib but my haematologist had a separate trial under way for a second-generation form of ibrutinib, then called BGB-3111 (now zanubrutinib).

Three and a half years later, after slow, steady improvement, my blood counts are all normal. My crushing fatigue, that in 2016 was so severe I was nearly entirely housebound and had to be wheeled along hospital corridors, has improved so dramatically that this year I have been able to average 6km walking a day.

I still tire easily but I am alive and well. I describe it as my “Lazarus experience”. Zanubrutinib has brought me back from the near-dead.

My New Zealand-born brother is an Australian citizen who lives in Brisbane. If he were to be diagnosed with CLL with 17p deletion like me, he would have access to ibrutinib for less than $40 a month under the Australian public health system. If and when that failed, he would be able to access another wonder drug, venetoclax, also for a minimal charge.

In short, Australia’s health system offers a Lazarus experience for patients with high-risk CLL while New Zealanders who aren’t lucky enough to be accepted onto a clinical trial or rich enough to pay can currently expect only a place on death row.