‘Don’t write us off ’
Every year, about 350 women in New Zealand are diagnosed with advanced breast cancer. Next week, patients and their supporters will march on Parliament to petition Pharmac to fund two drugs with life-extending promise. Oliver Lewis reports. ‘All I want is
Nicki Ball has a simple message for Pharmac, the drug-buying agency: ‘‘I just don’t think they should write us off. Just because we’ve been given a stage 4 diagnosis, doesn’t mean that I’m not worth it.’’
Ball is one of about 30,000 signatories to a petition calling for Pharmac to fund palbociclib, known as Ibrance. Another petition will be delivered to Parliament next Tuesday to fund
T-DM1, known as Kadcyla. Advanced breast cancer is cancer that has spread to other parts of the body; it is incurable. The drugs, which are designed for different types of cancer and stages of treatment, are meant to delay progression and prolong life.
‘‘All I want is time,’’ Ball says, her voice cracking. ‘‘It doesn’t mean that I’m dying right now
. . . It’s just my horizon is sitting right at the tip of my toes. You guys just pretend it’s not there.’’
Time is something advanced breast cancer patients in New Zealand have less of than patients in comparable countries, according to a recent Breast Cancer Foundation report.
The research found patients have a median survival time of
16 months from diagnosis, compared with two or three years in countries such as Germany, France and Australia.
Auckland medical oncologist Dr Reuben Broom agrees New Zealand is lagging behind, and says drug availability is probably a factor.
Both Ibrance and Kadcyla are funded in other countries, including the United Kingdom and Canada. ‘‘Our society needs to decide if drugs like these are a priority. Certainly the affected patients, their families and those of us caring for them, believe they can make a big difference,’’ Broom says.
Kadcyla, a second-line therapy, can significantly prolong life and Ibrance typically doubles the time patients can have their disease controlled with anti-hormonal therapy, he says.
Both drugs are registered for use in New Zealand but are only available privately and at significant cost.
North Canterbury woman Clare Dunlop is self-funding her treatment with Kadcyla. The drug costs about $8300 a time, while the infusion itself costs $1300.
Dunlop says she would not be alive without the drug, but knows of others who have been unable to meet the cost. ‘‘People have said to me, ‘I just can’t put my family into that sort of debt’, and then they’ve passed away. It’s criminal.’’
Broom, an adviser to the Breast Cancer Foundation, says there is considerable inequity at present, and he and other oncologists would like to have the drugs available for patients.
He believes about 50 people a year could be suitable for Kadcyla, and up to 250 patients for Ibrance. But he expects overall treatment numbers would be fewer.
Applications have been made to Pharmac to finance both drugs – a committee recommended funding Kadcyla with low priority in November 2017 – but a decision has yet to be made on either.
For Ball and Dunlop, the wait is akin to negligence. Nicki Ball compares her life with advanced breast cancer to hiking through a forest. There are dark days when the branches block out the light; days spent in dappled shade; and days spent in clearings with bright sunshine streaming in.
She used to think of it as a battle, but the implication of winning and losing is no longer helpful, not after a mastectomy and chemotherapy failed to prevent her latest diagnosis.
‘‘I’m now trying to love this thing,’’ she says, turning to her husband. ‘‘Craig [her husband] thinks I’m absolutely bloody mad because he hates it.
‘‘But I know it’s never going to go. Hey, there might be some magical thing and I might go into radical remission. But my point is, I just want to live cohesively with it – for a long time.’’
Ball wants to see her sons fall in love and have children, to learn te reo and to spend time with her husband and travel the world like they had planned for their retirement.
The 53-year-old was first diagnosed with breast cancer in 2012 while working as the Gateway co-ordinator at Aranui High School in Christchurch. Her second diagnosis was in 2015, when she received the more intrusive treatment.
Earlier this year, Ball went to the doctor concerned about a pain in her side. A June oncology appointment confirmed what she already knew: the cancer had spread.
She has been taking an oral chemotherapy drug ever since. Her ritual when she takes one is to yell ‘luck’; her son Kieran returns the call and the word resonates through the house.
This month Ball and her husband are in New York – they have tickets to see Phil Collins on his ‘Not Dead Yet Tour’. When they get back, she starts a course of intravenous chemotherapy.
If it works to halt the spread of the cancer, her next option is Ibrance. Ball is already thinking about the cost – about $5750 a month – and the drain it will put on her family.
‘‘We’re going to be using any resources that we have to keep me alive, which I want to do – but in the same token I don’t want to screw him over and leave him with nothing,’’ she says of her husband.
Ball says other women have re-mortgaged or sold their homes to afford treatment.
She and her husband do their best to laugh and seek out joy, but after a lifetime of work, both of them feel let down and angry by the lack of funding.
‘‘If you can keep these women going, there might be a cure that can save them,’’ Craig Ball says. ‘‘So it’s not wasted money, it’s just investing it in these women until there’s a cure. These politicians and Pharmac, they’re only one bad scan away from being in the same situation.’’ Clare Dunlop unfastens a gate leading to a rear paddock and calls for her horse, Suzy. In the past two weeks, the 53-year-old has been riding a handful of times, and recently returned to work as a Plunket nurse.
‘‘You wouldn’t recognise me if you saw me three or four months ago,’’ Dunlop says. Every so often during the interview she lifts up her dark sunglasses to wipe away a tear.
Dunlop credits her trans-
formation to Kadcyla, a drug she started taking in July after an earlier test showed her cancer had spread, and her liver was at risk of failure.
She has had four transfusions so far – one every three weeks. The drug itself cost about $8300 each time, except for the free fourth cycle. However, Ball still pays the infusion fee of $1300. After 14 cycles, it is just the infusion cost.
Financing her treatment has been difficult, but Dunlop says she has been lucky: friends and family have chipped in, and a Givealittle page set up by a relative has raised about $50,000.
‘‘What choice do you have, really? I know of other people who haven’t been able to afford it, or haven’t had the support, and they’re no longer with us.’’
Dunlop was first diagnosed with breast cancer in 2012. She had chemotherapy, radiation treatment, a mastectomy and a year on the drug Herceptin.
The treatment went well, but in late 2014 she started feeling pain in her right side. A scan revealed a 49 millimetre tumour in her liver Again, Dunlop responded well to treatment.
Throughout, the grandmother and mother of three has maintained a positive outlook. She frames the cancer as a chronic disease that can be treated.
‘‘I just have to stay positive, really. I don’t accept that this is a death sentence, even though everyone tells me it is. You just have to carry on.’’
Dunlop hopes Kadcyla will allow her to do this – to carry on into a future where medical advances may result in more effective drugs, or even a cure.
‘‘Why not fund it?’’ she says. ‘‘I think Pharmac are being negligent . . . I feel really angry that they haven’t funded it. They need to do it, and they need to do it now.’’
As Dunlop goes inside to get a carrot for Suzy, her aunt, Jan Harrison, expresses her amazement. ‘‘She’s been to hell and back, but she’s still so positive.’’
‘No decisions yet’
Health Minister David Clark says he completely understands calls for new cancer drugs to be funded, but decisions are made by Pharmac, independently of the minister.
‘‘This independence means the public can have confidence in the impartiality of funding decisions. We cannot have politicians second-guessing clinical experts.’’
Pharmac received a funding application for Kadcyla for use as a second-line treatment in August 2017, and an application for Ibrance in February.
‘‘No decisions have been taken as yet,’’ Clark says.
The funding agency sought expert advice on both drugs from its cancer treatments subcommittee in September. It was unable to say when a decision will be made on either drug.
‘‘This is because the relative priority of funding one medicine compared with other medicines can change over time,’’ says Pharmac operations director Lisa Williams.
When considering funding applications, Pharmac uses a framework that looks at health need, health benefits, costs and savings, and suitability.
Williams says Pharmac works to get the best health outcomes for New Zealand within its available budget, and while some medicines may be available overseas, funding and reimbursement systems are often not comparable.
‘‘New Zealand must make its own decisions, carefully assessing the available evidence and thinking about medicines’ use in the New Zealand health context.’’