Positive boost
Pharmac funding for Kadcyla follows a long campaign.
Trastuzumab emtansine (sold as Kadcyla) is used to treat advanced HER2-positive breast cancer and is one of three cancer drugs Pharmac is funding from December 1. The other two are venetoclax (sold as Venclexta and Venclyxto), which is used to treat chronic lymphocytic leukaemia, and alectinib (Alecensa), used to treat a type of advanced lung cancer known as ALK-positive nonsmall-cell lung cancer.
Kadcyla has been found to extend the life of women with advanced HER2-positive breast cancer. It’s given as an infusion every three weeks or so, and it is already funded in many other countries, including Australia and the UK. But until now, New Zealand women wanting to use the drug have had to pay about $9000 a month.
Breast-cancer organisations have been lobbying to get Kadcyla funded for several years, along with another drug called Ibrance, which is used to treat HER2-negative breast cancer. Ibrance has not yet been approved for funding.
About one in five breast cancers is HER2-positive, where cancer cells have too many copies of the HER2 protein. It’s an aggressive type of the disease and is likely to progress more quickly than cancer that is not HER2-positive.
The Breast Cancer Foundation estimates that up to 100 New Zealand women may be offered Kadcyla over the next year.
According to Pharmac, about 150 Kiwis with chronic lymphocytic leukaemia (CLL) are likely to benefit from the first year of funding for venetoclax, rising to about 230 in the second year. CLL is the most common type of leukaemia in adults older than 19 and accounts for 37% of all leukaemia cases.
It’s not known exactly how many people might benefit from Alecensa. Although non-small-cell lung cancer accounts for about 85% of all lung-cancer cases, it’s thought only 4% to 5% of those are ALK-positive. People who develop it have a gene mutation that predisposes them to getting the disease. ALK-positive lung cancer often affects women under the age of 50 who have never smoked.
Lung Foundation NZ medical director Chris Atkinson, an oncologist, recently called for national guidelines to be introduced to ensure people who develop lung cancer as a result of the mutation are identified so they get access to Alecensa.
New Zealand women wanting to use the drug have had to pay about $9000 a month.
has nothing but praise for the kind and caring treatment she has received, mainly through the public health system.
She has much to show for her decades with cancer, chiefly her resurrection of the Stout Research Centre in 2001. Saving it from the cost-cutting axe was her “proudest achievement”. It sits aside from the towering avenue of Victoria University megaliths in a small cottage next door to the International Institute of Modern Letters. Her former office, once someone’s sunny bedroom, has what is surely one of the best office views in the capital, a 180° panorama. There she has taught and researched the rich texture of New Zealand Studies, including a study of the books New Zealanders read in the 19th century, especially Charles Dickens, Anthony Trollope and Mrs Henry (Ellen) Wood, the Victorian novelist best known for East Lynne.
Wevers’ passion for reading, writing and discussing literature helped her efforts to ignore chest pains and other acute discomforts – not least the pity of friends and staff. She has been both a revered and a beloved figure in New Zealand academia. Tactful nonchalance was her way of fending off awkward conversations about her prognosis. Despite her unusually long survival, the odds have never been good.
When she awoke after the mastectomy operation, she’d thought that would be the end of it. It was just the beginning.
Her surgeon had to tell her that the cancer was now on her chest wall and in her lymph nodes. Since then, it has been a regular date with chemotherapy and radiation to keep the cancer at bay.
It’s now throughout her body, save, happily for her brain, lungs and spine. Lately, she has been responding well to Kadcyla, a a last line of defence for advanced metastatic HER-2 positive breast cancer that Pharmac has just this month begun to fully fund for eligible people
(see sidebar, page 26). She has so far paid nearly $100,000 for 18 months’ worth, including the cost of having it administered privately ($1300 a time). “Not much point keeping KiwiSaver funds if you are going to die without the drug,” she says.
Not that she had any inkling about genetic destiny then, but when Wevers returned from studies in Britain, aged 25 and temporarily burnt out, her mother, Joyce, was dying of metastatic breast cancer. She’d had a mastectomy, but had not been given chemo- or radiation therapy until it was far too late. “The treatment seemed to be the wrong way around and she died two weeks after her 60th birthday.”
The Wevers were a close family with a rich backstory. Englishwoman Joyce Rendall lost her first husband, and the father of her first child, Jeremy, to the Nazis. He was the son of a Jewish couple who owned a textile factory near the DutchGerman border, and Joyce later learnt, via the Red Cross, that he had been taken to the Mauthausen concentration camp, where he died two weeks later.
Joyce loved her Jewish in-laws and their wider family, and always remained close to those still alive after the war, even when 20,000km apart. She had freedom of movement in occupied Holland, and Jeremy was not classified as Jewish because he was one short of three Jewish grandparents. Joyce attracted the attention of the occupying Nazis, as she was constantly seen riding around on her bike, with her little dog Bobby in the front basket. They stopped her one day and accused her of spying. “Spies don’t have dogs!”, she said, and was let to go on her way.
Joyce was often on the move as gobetween for her husband’s family, who were all in hiding, and she once escorted three of the children to a safe house by train. An SS officer got into the same carriage. To keep herself and the children
She hated the snobbery at Oxford University. “You were never accepted as a colonial, and a woman to boot.”
calm, they played an alphabet game, thinking of words beginning with each letter. Joyce had to feign a coughing fit when the children triumphantly said Z for Zionism. “My mother was fearless,” says Wevers. ”Many people betrayed their Jewish compatriots. You were really putting your life on the line by helping them.”
The family hardly ever talked about the wartime past. Jeremy’s father “died in the war” was pretty much the limit of the information. The first time Wevers says she really understood what her family had gone through was at Jeremy’s wedding, when a neighbour recounted it in a speech at the reception. Everyone cried.
“It had the most profound effect on me.”
She later learnt more. Jeremy’s grandfather died in hiding but his grandmother survived the war and lived till she was 90. She brought up four of her grandchildren whose parents had died. “The rest of the family survived in hiding but that took its own toll because they couldn’t be told that their war parents were not their real parents, so reuniting them was very hard. The ones who were babies and toddlers had it hardest. It has been a difficult thing to talk about. This is common for Holocaust survivors, and our family has only talked about it as everyone has got older.”
Joyce later married Dutch architect Mattheus (Bart) Wevers and had four more children, all of whom were to add to their father’s legacy – striking and distinctive architecture – to make the Wevers name one of considerable eminence: Maarten – now Sir Maarten – a distinguished diplomat once known as “Mister Apec” and former head of the Department of the Prime Minister and Cabinet; Francis, a prominent trade unionist, then public relations consultant; Nick, who died in 2014, was chief executive of Capital Properties; and Lydia, the academic star. Jeremy became a trade policy specialist.
The Wevers’ upbringing was distinguished by vigorous and lengthy debates on all manner of subjects – and the fact that they had domestic habits that were just a little bit exotic and puzzling to other provincial New Zealanders. Lydia was a two-year-old when Bart Wevers landed a job in Masterton, and despite early hitches with New Zealand Immigration, the family settled there in 1953 – whereupon Bart proceeded to transform the look of the place with his modernist designs, including the War Memorial building.
The Wevers children were soon absorbed into the free-wheeling tribes of Masterton kids, running in and out of each other’s houses. Bart and Joyce tried hard to fit in to life in Masterton. “When Dad told me his citizenship had come through, I thought it had been announced on the midday news, because Mum and Dad always listened to it. Dad was the first Dutchman in New Zealand to be elected a town councillor [in 1962].”
But their lifestyle was a world apart from the standard 1950s Wairarapa template. They drank coffee from Fuller Fulton’s in Wellington, ate exotic foods like cheese that wasn’t colby or cheddar, made yogurt and lived in a house Bart designed with the living room upstairs. From that living room came the sound of the grand piano Jeremy had inherited from his father. “People were amazed at how late we stayed up.”
Like her mother, Wevers was a fast and insatiable reader. Joyce negotiated with Miss Watson at the library for her daughter to borrow more than the maximum number of books allowed in one week – two. She quickly exhausted the Enid Blyton and LM Montgomery collections ( Anne of Green Gables). In an earlier Listener interview, she recalled her first ever “proper” book, which she demanded her mother get from the library. This was The Little Red Aeroplane. “I read it in about two seconds flat – and then had an enormous tantrum because it was finished.”
Wevers was the only girl in her form to go to university, though she never doubted for a second that she would do so. She studied English literature, history and Greek, and topped almost all her English classes at Victoria University. With her tutor’s encouragement, she won a Commonwealth scholarship to Oxford University. She hated the snobbery she encountered there. “You were never accepted as a colonial, and a woman to boot. I was advised to get rid of my accent.” On the first day, her tutor drawled in what is now a very unfashionable accent in Britain, “Sooo, what exaactly do you dooo in New Zee-ar-land?”
Still, she says, the teaching was excellent, and there was the great joy and refuge of the Bodleian Library, to which she has lifetime membership as a former student. “Britain invented legal deposit and the Bodleian contains everything printed in Britain for centuries. You looked up the books in a huge handwritten catalogue and everything you’d ever wanted to read but couldn’t find in New Zealand was there.”
Lydia married Bisley in the 1980s, accompanying him on postings to Brussels, Geneva and Sydney, where Lydia read and taught Australian literature at the University of New South Wales, discovering Henry Lawson, Marcus Clarke, Henry Handel Richardson and other treasures of Australian literary life. Helen Garner is a favourite.
Wevers is currently busy, using her Kadcyla time, trying to hone the French she acquired from living in Europe through Alliance Française classes. She plans to add te reo Māori to her schedule – when she’s not spending time with her children, Seb, Lizzie and Tom, and her three grandchildren.
And there are more books – to read and to reread. This is a woman who may have already fitted several lifetimes’ worth of reading into one. She has also, in her head, probably lived many lifetimes through her reading. In an earlier interview, she told the Listener, “Think of Dickens … he is quite a page turner.
You are always being carried away by the plot, but Dickens also shows you a whole world. It’s not just a story about someone who is poverty-stricken or badly treated or an orphan; you see layers and layers of the world of Victorian England in Dickens. You can’t easily summarise it … the world keeps opening out in front of you. That’s literature, I think.
“I don’t know what it is that drives this compulsion, but, for me, it’s essential to living.”
These days, she also walks extensively – “an absolute panacea” – and spends as much time as she can outdoors. “I need to be outside with other living things, part of the natural world. I’m not afraid to die, but I do like living”.
There is just the option of trying to buy more time, and the hope that it will be quality time.