‘You are all just one diagnosis away from being me’

‘You are all just one diagnosis away from being me’

October 29, 2021

Facing stage 4 breast cancer, Charlotte Lockhart talks to Joanna Wane about New Zealand’s underfunded medicine crisis and why we should switch to a four-day work week.

“Bugger! So long story short, on January 26 I was told that the swelling in my shoulder is malignant and subsequently, I now know I have advanced breast cancer, stage 4.”
Charlotte’s Cancer Journey Blog (Facebook post, February 28, 2021)

Charlotte Lockhart doesn’t dwell on “what ifs”. Right now, she doesn’t have the time or the energy to waste on it. But still … what if she’d been given an ultrasound scan when she asked for one last October while she was sitting out MIQ in Auckland experiencing debilitating pain in her shoulder? What if, six months earlier, a lump in her neck had raised serious alarm bells, instead of initially being diagnosed as scar tissue from radiotherapy treatment during her first brush with breast cancer in 2004?

But then … what if researchers hadn’t made a breakthrough with Ibrance, a new class of targeted therapy for Lockhart’s particular type of metastatic breast cancer? And what if, after years of intense lobbying, Pharmac had decided against funding the drug, leaving patients to keep stumping up for it themselves at a cost of $6000 a month? In some ways, at least, Lockhart is one of the lucky ones.

After years of being cancer-free, that second diagnosis was a brutal blow; her first shoulder scan “lit up like a Christmas tree”. Reassuringly, the co-founder and CEO of the not-for-profit 4 Day Week Global initiative has responded well to treatment. Now almost pain-free, her biggest issue is fatigue. “I’m used to being able to go at 100 miles an hour and do a million things. I’m a Gen-X female, right? Yes is my middle name.”

Ibrance, which has been subsidised by Pharmac, the Government’s drug-buying agency since April last year, has been truly life-changing for Lockhart, who’s 54. Without it, her life expectancy might be as little as two years.

“Now, if I live another five years [on Ibrance], medical advances in cancer therapy will be better again and that will probably buy me another five years,” she says. “In 10 years’ time, I’d be surprised if they haven’t found a cure for this. Whether that will come in time for me or not, that’s going to mean we have fewer of our people even starting on this journey.”

Lockhart has private health insurance — “My advice to readers out there is that if you can humanly afford it, or your place of employment offers it, take it with both hands” — and is in a position to cover extra medical costs that for many would simply be out of reach.

Whether New Zealand’s drug-buying model remains fit for purpose has been the subject of heated and often emotive debate since Pharmac was founded in the early 90s, largely due to the eye-watering cost of new-generation therapies.A 2019 International Comparisons of Modern Medicines report ranked New Zealand last among OECD countries for both access to funded medicine and pharmaceutical investment overall.

Results released this month from a survey of 1000 New Zealanders, commissioned by Patient Voice Aotearoa, found more than 30 per cent knew someone who’d had to pay for an unfunded medicine. In 2020, some 90 Givealittle pages were set up to raise money for treatment costs, most of them involving cancer patients.

In August, former TV journalist Rachel Smalley and photographer Jo Currie launched The Medicine Gap, calling on the Government to increase Pharmac’s funding to cover a shortfall that’s been estimated at $400 million a year. An independent review of the agency was due to be delivered to Health Minister Andrew Little two months ago but has been delayed due to the latest Covid-19 lockdown.

Smalley has a track record of investigating what she calls New Zealand’s unfunded medicine crisis and has witnessed its impact first-hand; her son goes to the same school as teenager Bella Powell, who has cystic fibrosis and relies on crowd-funding to pay for a drug called Trikafta that’s keeping her alive at a cost of $470,000 a year.

Personal stories are posted each week on The Medicine Gap website. One of the first was a heartbreaking interview with the parents of a little girl called Rebecca, who died at the age of five months from the genetic disorder spinal muscular atrophy. The drug used to treat her condition, Spinraza, is not funded here.

“The more you dig into this, the more you realise how much New Zealand has slipped behind the modern world,” says Smalley, who argues the Pharmac model was never designed to cope with the wave of high-tech immunotherapy drugs now coming on to the market.

“There are drugs funded in Slovakia and Venezuela that we don’t support here. And we’re not just talking about top-flight medicines but at entry-level. We’re not even keeping up with the World Health Organisation’s list of essential medicines. So you have Big Pharma on one side with the prices they charge, this underfunded beast on the other, and a swathe of humanity caught up in the middle of it all.”

Lockhart, who’s added her voice to The Medicine Gap campaign, says most people have no idea they might one day end up relying on charity to stay alive. She questions the cost-benefit rationale used for drug funding, which doesn’t take into account the positive economics of keeping someone well enough to stay in work or to care for their young children, even if there’s no promise of a “cure”.

“It’s a very complex equation but as a kind society we need to decide what’s important to us and that it’s money we’re prepared to pay,” she says. “You are all just one diagnosis away from being me.”

“Last week I spoke at an International Women’s Day event, which had been postponed due to lockdown. I challenged the audience to focus on why we should work less. The attached picture tells why in my book.”
Charlotte’s Cancer Journey Blog (March 22, 2021)

This is the message Lockhart shared on her post: “You are totally replaceable at work. You are not replaceable at home. Home is your real life. Keep that perspective. Always.”

Lockhart was 37 and the mother of two small boys when she was first diagnosed with breast cancer, in 2004. That same year, she was named Mike Pero Mortgages’ top broker by value and won a national quality award.

Her crusade to convert corporations to a four-day working week began in 2018 when she and her husband Andrew Barnes, founder of New Zealand-based financial services firm Perpetual Guardian, switched the company to that model in 2018. Barnes later wrote a book about it (“The 4 Day Week”), reporting a 20 per cent lift in employee productivity, a 27 per cent reduction in work stress levels, and a 45 per cent increase in employee work-life balance.

The couple’s 4 Day Week Global movement — which advocates for reduced work hours at the same pay but without a loss in productivity — is rapidly gaining both credibility and momentum. US congressman Mark Takano introduced legislation in July that would reduce the standard working week to 32 hours, an economic policy guideline already adopted by Japan. The crowd-funding platform Kickstarter is preparing to test the concept next year, and consumer goods international Unilever is already partway through a 12-month voluntary trial here with its New Zealand staff.

Bonus spinoffs include a shrinking global footprint: in the United States it’s estimated introducing a third weekend day would reduce carbon emissions by 45 million tonnes. Anecdotally, companies who’ve come on board report a significant lift in productivity; New Zealand businesses are now being recruited to join a pilot programme being run in the US and Ireland next year to substantiate those claims with hard data.

Lockhart says it’s already well established that less work equals better wellbeing, a truism that’s taken her a long time to embrace. “When I got breast cancer 17 years ago, [surgeon] Stan Govender told me, ‘We don’t know what causes this, but we do know there’s one thing you can do in your life and that’s to reduce stress.’ I did for a bit, but I had two small children and a business, and it just crept back in.

“Now I’ve got metastatic breast cancer and I look at all of those hours I worked, all of that wine I drank to get through it, and all the times when I worked instead of spending time with my family. And the equation doesn’t add up. I might never get the chance to be a grandmother now. Did the stress I had contribute to that? And even if it didn’t, think of all the time that I missed.

“There’s a phrase I use a lot where I say to business leaders, we have to remember that we borrow our people from their lives. That gives [employers] pause for thought. It’s a mindset that puts work into the right place.”

“Happy Vaxathon day! Just watching the idiots from the Tāmaki protest blocking the roads on Queen St all while having my blood test and it was taken by none other than Dr Lance O’Sullivan! Yes, you read that right, while those idiots are protesting against the vaccine to keep us all safe, our New Zealander of the Year is working his weekend to provide me with the care I need as part of staying alive.”
Charlotte’s Cancer Blog, October 16, 2021

A year after her first stint in MIQ, Lockhart was back in quarantine again this month after returning from an extended trip to see family in England. The day before this post, the New Zealand Herald reported a warning from the Breast Cancer Foundation that more than 130 women could die of a breast cancer they don’t know they have, unless the Government urgently addresses a lockdown backlog in the screening programme.

In London, a Harley Street oncology practice is running a long-term trial with patients using off-label drugs — from statins and diabetes medication to a worming tablet — that show evidence of a benefit for cancer. Lockhart, who’s on the board of the Wellbeing Research Centre at Oxford University, is open to experimental treatments such as this that might buy her extra time.

“For me, it’s about giving myself absolutely every chance of living as long as possible. And I’m early enough in my treatment that I feel value in trying everything that’s not going to do me any medical harm.”

While a series of scans have shown marked improvement in her condition, she’s not yet officially NED (no evidence of disease) – but that’s the pathway she’s aiming for. “Look at the journey we went through with Aids, where it was a death sentence for so long and now you can be HIV-positive for the rest of what is a normal life span,” she says.

“At the moment, there’s a large conversation in that space, shifting away from describing cancer as incurable and talking about living with cancer instead, because that’s what people are doing.”

Tomorrow, a virtual Pink Ribbon Walk will be held between 10am and 2pm, following the cancellation of this year’s fundraising walks in Auckland, Wellington and Christchurch. There’ll be prizes for the best dressed, plus a virtual warm-up led by actor Joe Naufahu, whose mother was diagnosed with advanced breast cancer last year. To register for a 5km or 10km walk through your neighbourhood, visit pinkribbonwalk.co.nz/virtual.

Today’s annual Pink Ribbon Street Appeal has also been cancelled in Auckland and parts of the Waikato currently in level 3 but will go ahead in all other regions. Online donations can be made at pinkribbonappeal.co.nz

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