Mum and Dad both diagnosed with Stage 4 (terminal) lung cancer (non-smokers)

Graham was invited by Andrew Little, Minister of Health, to give a presentation to a Parliamentary Cocktail Function on the 16th of November. The purpose of the function was to highlight the challenges faced by lung cancer patients in New Zealand. Members of Parliament and representatives from Pharmac, media, pharmaceutical companies were in attendance as well as lung cancer patients and ambassadors. Graham was one of two lung cancer patient ambassadors to speak at the function.

Below is the text of Graham's presentation:

My name is Graham Brooke-Smith, at the beginning of this year in January I was diagnosed with Lung Cancer Stage 4, never smoked. It was identified when I had lower back pain otherwise, I felt just fine. Went to the doctor and did an x-ray, that’s the moment my life changed. I had a wife and 2 children a mortgage, by all accounts a good life. As you know once the cancer leaves its place of origin and extends to another part of your body; essentially the doctors consider you terminal.

Why wasn’t it picked up sooner before it got to this stage?

I was informed that without treatment I would have 6 months, with a targeted cancer fighting pill Osimertinib 1st generation, I would have 2-3 years. The doctors were confident the Osimertinib 3rd generation I would have 4 plus years. I liked the plus part of that number. But there’s a catch, the 1st generation pill is funded by Pharmac, but the 3rd generation pill, which is far better with longer life expectancy and fewer and less severe side effects, is not funded by Pharmac. So I needed to find $11,000 every month. You choose.

What would you do? Live for 2-3 years with side effects or pay? Are you rich enough to have that sort of money?

Five months later in May this year I was on the 3rd generation pill because the New Zealand public funded my Give-a-Little campaign and paid for my treatment. Saved my life, bought me more time with my children. Children who need their father. But….. then my wife Mery had lower back pain too, she had an x-ray, Mery too was diagnosed with Stage 4 lung cancer. Never smoked. Here we go again just 5 months apart. We lived healthy lives as Mery was really into organic food and eating well and very much conscientious towards living healthy lives especial regarding our 2 little boys. Our boys who were 11 and 9 years old at the time.

But Mery’s cancer in her lung was 3 times the size of mine.

Why wasn’t it picked up sooner before it got to this stage?

The doctors found that Mery’s lung cancer had a different DNA to mine, therefore required a different treatment. We were informed that without treatment Mery would have 6 months, with Chemotherapy Mery would have 2-3 years. The doctors were confident that with Immunotherapy Mery would have 4 plus years. We liked the plus part of that number. But there’s a catch the Chemotherapy is funded by Pharmac, but the Immunotherapy, which is far better with longer life expectancy, is not funded by Pharmac. So Mery too needed to find $9,000 every 3 weeks, which equates to $11,000 per month the same as myself. You choose.

What would you do? Live for 2-3 years or pay? Are you rich enough to have that sort of money?

So now for the both of us that works out to over $22,000 per month, and I thank God for all those that contributed, so generously to our Give-a-Little campaign. Lucky for us, but for those that simply can’t, then what?

As parents to 2 young boys we had to have conversations with people about orphaning our children if things didn’t work out. Who would raise them? Not a conversation any parent should ever need to have.

Last week I buried my wife; I buried my children’s mother on Thursday last week.

Why wasn’t it picked up sooner before it got to this stage?

I’m a widower now. I’m a solo dad now, with terminal cancer. If life wasn’t tough enough. Money is the last thing a family in this situation should be worried about and choosing not receiving treatment when it’s so readily available, ….. if you have the money. Why, are we choosing not to fund these latest drugs/medicines/treatments. The cost to individuals, to families, to this country, with so many affected. No funding for the best medicines, but old medicines, old technology because it’s cheaper. Are we placing money before life?

We can’t afford not to fund these treatments. The thing is we can afford it. It’s like anything in life, where there is a will, there is a way. You choose. Perhaps when you are personally touched by this evil, then I guess something will be done.

Perhaps the system is too big to change, so let’s do nothing, its simply easier. Then I ask, is the system working for you, or are you working for the system, a system that is failing. Costing lives.

I stand here today from a position of gratefulness. Because of the public of New Zealand, especially to those 5 ½ thousand people who contributed to Mery and my Give-A-Little campaign. Whilst, I have been blessed, I know that each day so many people will be diagnosed with lung cancer in New Zealand. Unfortunately they are going to miss out because Pharmac will not be funding them.

Whilst I appreciate the budget for medicine is not unlimited. The budget must be increased. We are a first world country and should have access to first-class modern medicine. The impact seen in my family I don’t want to see occur to other fellow New Zealanders. I am grateful for Pharmac in what they provide. But unfortunately, they do not go far enough, giving 1st generation treatment instead of the 3rd generation treatment, and Immunotherapy.

I am not under stating this, that early detection is essential.

There will always be new medicine, there’s always going to be cutting edge technology. We need to be at the forefront of that or more lives will be lost.

*New Zealand is ranked last out of 20 OECD countries for the number of publicly funded modern medicines and that is costing people their lives. Pharmac need to have a bigger budget from Central Government or lives will continue to be lost.

It should not be up to the public of New Zealand to keep people alive through fund raising.

* Source : https://www.medicinesnz.co.nz/our-industry/comparable-countries