Patients’ Perspective – Joy Wilkie

Kia ora koutou, kō Ngati Tarawhai me Ngaiterangi ngā iwi, kō Joy Wilkie ahau,  Tēnā koutou katoa

It’s great to be alive and here today.

Thanks Dr George, and our public health system, for my life. Without a stem cell transplant in 2016 I could well be dead already or be living a life of much less quality.

For 5 months in 2015 my GP prescribed ibuprofen 800s and told me he had a bad back too. Even when I crawled into his office, in August, he said the earliest I could have an MRI was October! Why was I fobbed off with anti-inflammatories and put on a slow waiting list? The gatekeeping might save MRI costs at the outset but causes more damage and cost in the long run.

See here why I need to walk carefully these days.

With 400 new Myeloma patients a year, how is it New Zealand GPs don’t suspect Myeloma in people like me when he knew I’d never had a back ache in my life? The patient survey makes it clear that long delays in getting diagnosed are at crisis point. GPs need Myeloma awareness.

In September 2015 the tennis ball size hole eaten by the myeloma in my iliac crest was first seen. It presented as a solitary plasmacytoma so I had 25 radiation treatments. Then a PET scan revealed two more lesions, one in the caudate lobe of my liver and the other in my right fibula. If we’d known I had three lesions I would have skipped the radiation. Systemic chemotherapy was needed.

Then that nasty but necessary melphalan preceding the stem cell transplant. Et voilà. Remission. My sole health costs since 2016 have been for monitoring and blood tests, no drugs.

Relapse requires innovative cancer drugs. How does Aotearoa compare internationally? Badly. The government is not fast tracking new life saving drugs. Australia does. The Pharmac model of.. ‘delay while bargaining down the price’ doesn’t work for people in life and death situations. It must introduce a fast track to save everyday Kiwis’ lives, mine included!

The cynic in me says we are cheap if we are dead. But that’s not the kind of New Zealand we want, nor want to be known for on the world stage. Illness is part of being human… no one ever knows who it will hit. Except that Myeloma is more likely to nab Māori, at a younger age, and survival is worse. Research is required to see if it’s genetic or socioeconomic…my 100 year old Aunty hariata hasn’t got it, but I did at 58.

In Aotearoa, we look after all people who are ill, don’t we? My lovely daughter did.

We’re proud of our public health system. Cancer is more an accident for most people than a rugby injury, a fall from a horse or a car accident. Our health system funds these emergencies regardless of people’s ages or their level of wealth. This is not how it is with cancer funding. I can’t afford health insurance. I’m your everyday Kiwi who can’t. If you can pay for yourself or resort to begging via Givealittle you can access what other kiwis can’t. This is not Equity. The quality of your treatment should not be determined by the 0s in your bank account. This two-tier system means if you have money you live longer and if you don’t, you die. Is the government ok with this? On the other hand, the government would spend $100,000 a year to keep me in prison, but not to keep me alive? Where is the government’s health equity model? Is it included in the Wellbeing Budget?

I don’t think patients know what isn’t funded until their disease is life threatening. I didn’t know the GP couldn’t get me an MRI through the DHB, I didn’t know PET scans need to be applied for and can be turned down, I didn’t know Pharmac said no to a stem cell stimulating drug – I had to fail before it was approved.

If I relapse today, I can’t afford to waste time failing on thalidomide before lenalidimide can be funded. I didn’t know doctors have to spend time lobbying for their paitients, as well as care for them. I didn’t know doctors had their hands tied. I’d never had experience of the health system before.

I’d never been sick. That’s my Dad doing a skydive for his 90th birthday … I wish for his longevity.

He aha te mea nui o te ao? He tangata, he tangata, he tangata. All people count.

Tihei mauri ora!