Woman battling cancer has to pay $64k for drug Cytoxan: 'They're making money out of me dying'

Author
RNZ,
Publish Date
Thu, 8 Apr 2021, 3:21PM
Mandy Grantley says she knows how lucky she is, but remains angry others will not be able to access money or credit to save their own lives. Photo / Supplied
Mandy Grantley says she knows how lucky she is, but remains angry others will not be able to access money or credit to save their own lives. Photo / Supplied

Woman battling cancer has to pay $64k for drug Cytoxan: 'They're making money out of me dying'

Author
RNZ,
Publish Date
Thu, 8 Apr 2021, 3:21PM

A woman battling cancer says heartbreak has turned to anger at the way she was forced to pay $64,000 for treatment advised by public health oncologists.

Mandy Grantley was given two years to live after bowel cancer spread to her lungs last year.

"They found a tumour in my bowels and removed it, which was all good," she told RNZ. "I had six months worth of chemo. After that I had a scan and it all looked good. It wasn't until last year during lockdown I was told over the phone it had spread to my lungs."

Grantley said she was then told by three different oncologists working within the public health system that her best course of action would be another six months of chemo alongside being administered unfunded drug, Cytoxan.

She was told she would need to go to a private clinic to have the drug administered after paying for the drug herself, and then go to get chemo at her local DHB hospital. The news was traumatic and overwhelming.

"The chemo was bad enough, but then being told you had to pay $64,000 for a private drug, which won't cure me but will prolong my life, and a better quality of life, I just thought, I can't do this.

"I have three young kids and a husband with a struggling business, we don't have $64,000. We would be remortgaging the house, which we already had a huge mortgage on."

Concerned for her family, Grantley persevered and two friends set up a Givealittle page and managed to raise the money.

The private drug cost her $27,000. To get it administered she had to pay a private clinic $36,000.

Grantley says she knows how lucky she is, but remains angry others will not be able to access money or credit to save their own lives.

"It makes me sick to my stomach that others out there don't have that opportunity ... those poor families behind me - it's just wrong," she said.

Having to go to two different medical facilities was also stressful and time-consuming, with Grantley relying on people to drive her to and from the clinic and public hospital, she added.

To add insult to injury Grantley had to pay $8000 GST on her treatment. The experience has made her reassess the merits of the public healthcare system and the Government's priorities.

"They're making money out of me dying. So much for a free health system. When you really need it, you're on your own and you don't know what it's like until someone close to you goes through it. I was really upset, I was heartbroken. But now I'm just damn well angry."

Grantley finished her treatment in November and her scans since have come back clear, the latest a scan in February. She has another scan this month and remains hopeful.

"I've never felt so good, never felt so healthy."

She said her health outcome so far had proved the efficacy of Cytoxan as an anti-cancer drug.

National deputy leader Shane Reti is asking MPs to support his bill seeking to allow privately-funded cancer medicines to be administered through DHBs, to reduce the financial burden on those with cancer.

However, Finance Minister Grant Robertson told RNZ the Government would not be supporting the bill when it comes before Parliament because it would only add to existing health inequalities.

"It is a challenging area where people are self-funding the drugs because obviously for the most part what we want to do is fund people's treatment through the public system and then all of the costs and so on associated with it are managed that way," he said.

"The reason that we're not looking to move in this area is because what effectively it would mean is that somebody who does have enough resources to fund their own treatment would end up taking up space in the public health system that would otherwise go to people whose cancer treatment is publicly funded.

"So actually it would have the effect of exacerbating inequality rather than creating fairness."

He said the Government was instead focused on funding more cancer treatments through its Crown entity Pharmac.

"From our perspective, the best thing we can possibly do here is put more funding in to fund more cancer drugs and Pharmac was able to fund five additional cancer medicines in our first term and we've continued to invest in Pharmac throughout our time in government and to work with the new cancer control authority to get more cancer radiation treatment machines... We really think that's the best investment we can make.

"I sympathise with people who are going through this situation but we are focused on getting people more public funding and dealing with people through the public system, rather than jumping across and supporting those who are funding privately."

Robertson also said efforts to get more people to use screening procedures for cervical cancer and HPV were ongoing, but he was non-committal regarding the introduction of self-swabbing tests, which were supposed to be rolled out three years ago.

"I know there is some advice coming through to us on that ... and that's all now part of the process that we work through with the budget," he said.

The issue was brought into focus this week with news that Conservation Minister Kiri Allan is battling stage 3 cervical cancer.