OPINION: Eight years ago, I began a torrid fight with multiple myeloma. My blood was being attacked by this insipid cancer, causing lesions and holes in my bones. A good friend at the then Canterbury District Health Board (DHB) assured me that we have the best and most modern treatment in the world when it comes to targeting myeloma.
My friend was right; just the year before, 2015, our government had approved expensive drugs and treatments to save lives. My journey included two stem cell transplants, chemotherapy, numerous funded drugs and initially a music review on Stuff of old Elton John albums. This was a distraction I wrote about, along with cancer updates, for the first 33 weeks of my care leading up to my first transplant.
A lot of time was spent in hospital with help and support from the DHB and family members and friends. Yes, at one stage I wore man nappies. Since then, the past few years in remission have been fabulous adjusting to my new normality. I was never afraid of all these repetitive, arduous challenges I would inevitably face; it’s just that, as I have discovered, the treatment hasn’t kept up with the times. Not quite leeches but c’mon, Pharmac, and our government.
It is now 2024 and the myeloma is back. Easy to forget this disease is an incurable, relapsing one in dire need of new combinations of treatment. Every patient is different but I feel like I was tricked. Gullibly, in 2016, I thought that funded new treatments for myeloma would be introduced annually, but no. This is no joke; no new drugs or anything have won funding for nine bleeding, bollocking years.
Obviously, I ignored and was unaware of the government’s so-slow-we-are-going-backwards policy because I was “well” and living my life of ignorant bliss.
Myeloma is the second-most common blood cancer in New Zealand. About 3000 Kiwis currently live with the disease. And no, it wasn’t on the list of 13 cancer drugs National promised before the election to fund but it is desperately needed, like yesterday, by me and my myeloma mates. We are waiting impatiently in a subdued holding pattern.
I am stoked that the government has finally increased funding for Pharmac. The cynic in me says it still won’t make a difference for myeloma patients. However, I will remain hopeful.
For me to pay for a new drug like daratumumab could cost more than $220,000 for the first year. It’s beyond my budget and that of most people.
This and other proven-to-be-lifesaving drugs for myeloma (carfilzomib and pomalidomide) are free in 48 countries, including Australia, the UK and Canada. Where is that Commonwealth spirit? These drugs have been around for long enough to prove they work and have saved many lives. I resent that time has stood still. Successive governments have done diddly squat for nine years and I haven’t even received my first pension cheque.
Yes, it’s personal. Just when I thought it was safe to go back in the water, nothing had been done. And while I’m mentioning that Jaws 2 tagline, it’s good to remember that star Roy Scheider died of multiple myeloma.
Here I am, with a wife who is a nurse but didn’t sign up to nurse me, two kids in their early 20s, one car and a small mortgage that won’t go away. Because of the chronic nature of myeloma there is no cure. Daratumumab has proven to prolong life and reduce symptoms. My current regime of drugs obviously helps a bit but is far less effective.
So go ahead, Luxo, make my day, become enlightened. As I look down into the darkness of the nine-year-old funding abyss I ask, please. I took 32 very old drugs yesterday. All I want is to take one brand-new, life-enhancing drug today.
PS, please note this rant may have been written under the influence of steroids.
Bruce Cushen currently works as a part-time teacher aide at St Andrew’s College in Christchurch.
