I can’t imagine what it’s like to be told you have 12 to 18 months to live. To look death in the eye as you carry on getting your daughter’s packed lunch, or greet your colleagues at work in the morning. Yet that’s what Rebekah Johnstone had to do.
At age 43, Johnstone was told she had triple negative breast cancer and her hopes of survival were slim. But she hung onto that word. Yes, her chances were ‘slim” – but not non-existent.
That’s because medicine has come on in leaps and bounds. Johnstone had choices – and hope. Her cancer can be treated by immunotherapy, surgery, chemotherapy, and radiation.
Johnstone was ready for everything the doctors could throw at her.
She knew there was no way the public health system could foot the bill for all this. But she had wonderful peace of mind and security because, thankfully, she’d invested in an AIA Cancer-Plus insurance policy.
That was a decision she was grateful for. Until she wasn’t.
After her diagnosis, Johnstone was only just holding it all together, and on top of that, though, she felt that getting every payout from AIA was a struggle.
What she needed was to spend her precious days and weeks to be with her family, not at her laptop, or on the phone chasing payments that were delayed or denied.
It started with her trauma payout. A lump sum that can be used for anything.
Johnstone wanted to use it for immunotherapy which needed self-funding as at that time it hadn’t been approved by Medsafe. Her doctor encouraged this as she felt it could be a game changer.
And she needed the funding quickly as she certainly didn't have a spare $100,000 in the bank.
She put in a claim, and then she waited. One week. Then two. Finally – six weeks later, it was approved.
Turns out the delay was because Johnstone made an omission on her form, and yes, she totally owns her mistake. What she couldn’t understand is why it took six weeks to solve, and why AIA didn’t at least let her know what was going on.
“I was completely in the dark,” she said, “and it's a really stressful time when you're told you're dying”.
Next she needed her right breast removed and her left one reduced. Johnstone put in another claim as this was covered in her policy. She got declined.
Feeling stressed and in disbelief, she rang AIA, only to have the service representative confirm there’d be no payout.
Johnstone went back through the email and saw the word “bariatric”. She thought "hang on, that’s weight loss surgery". She rang again explaining she had cancer, and that this surgery was vital.
AIA said they’d get back to her. She got no call back, no apology, just an email in her inbox later that day saying her surgery was approved.
She chased an apology directly and it came with the promise her problems were over. But they weren’t.
Around this time her BRCA gene results came back – and they were pretty shocking.
They showed Johnstone had a BRCA mutation. This meant a much higher cancer risk than previously thought.
Her gynaecologist said the presence of a growth in her uterus was likely cancerous and suggested a full hysterectomy and removal of her ovaries.
Similarly, her breast surgeon said the tissue in her remaining left breast would be pre-cancerous and should be removed to put Johnstone back into the risk range of the general population.
Both surgeries were declined, but for different reasons. For the removal of her uterus and ovaries it was because AIA deemed the operation prophylactic or preventative and therefore not eligible for funding.
And, despite putting in the claim two weeks prior to her surgery, Johnstone was only told she’d been declined the Friday beforehand.
Her surgeon jumped into action, contacting AIA and explaining why this surgery was critical and fell within the policy. AIA agreed, but this was too late for the operation to take place and surgery had to be delayed.
With her left breast, again, her surgeon firmly believed mastectomy to be standard best practice internationally. But AIA again deemed the operation prophylactic which isn’t covered in its policy.
And now – there’s a real twist in the tale. Johnstone became a full-time employee at her work rather than a contractor and with that came an insurance plan with Accuro.
She put in claims for both her hysterectomy and mastectomy with this firm. The hysterectomy was approved within 24 hours. With the mastectomy, like AIA, it initially responded that the operation was prophylactic and wouldn't be funded. But following discussion with Johnstone's breast surgeon, it changed it's stance and agreed to funding.
Johnstone now has all the treatment she needs. She’s incredibly grateful in this sense to both Accuro and AIA, but she still wanted Fair Go to approach AIA.
She feels it needs to improve its handling of cases, particularly for people who are very ill or dying.
“That's exactly what I want, for people to have a hassle-free, non-stressful experience when everything else [is] so stressful.”
I spoke to Dr John Mayhew, AIA’s chief medical officer. It was refreshing to have an insurance company willing to talk, rather than sending a statement. Top points to AIA for that.
Mayhew defended AIA's record and noted it had covered all the necessary treatment at a cost of some $400,000.
He told us they’d be willing to cover Johnstone's left breast mastectomy outside of its policy conditions, with what's known as a one-off ex-gratia payment.
But for Johnstone, finances weren't the whole story. It was her struggle to get what she needed from AIA at a time when she'd hit rock bottom emotionally.
She feels improving communication would go an incredibly long way to help customers feel supported, for them to have that promised peace of mind.
Johnstone was grateful AIA acknowledged it had played a part in her difficulties, but admits she was really hoping for a promise of quicker decisions and kinder customer care.
Still, Mayhew hadn't finished and what came next was much better news.
He announced that AIA would now change its policy so that women with breast cancer who have a BRCA gene mutation would be covered for a second mastectomy if recommended by their doctor, and if they chose this path.
We applaud AIA for this improvement in its policy – one that New Zealand breast cancer surgeons fully support as essential care.
This is a great step forward for breast cancer patients in the future and hopefully one that might raise the bar for other insurers who have yet to make this change.
The hard truth is that 3500 women are diagnosed with breast cancer every year, and about 10% of those women have the BRCA gene mutation.
For those women, these policy changes could help save their lives and give them much-needed peace of mind.
We salute Johnstone for her courage in coming to Fair Go and helping to bring this change for the better.
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