Pippa van Paauwe’s smear tests were incorrectly assessed as normal - in 2017, and again in 2020 - allowing cancer to develop past curability.
She tells Nicholas Jones about grieving losses that haven’t yet happened - her children’s 21st birthdays, being a grandparent - and her determination to protect other women relying on a disjointed and underfunded health system.
Pippa van Paauwe was on holiday when cancer’s knock at the door became a hammer.
She’d bled for weeks, but doctors suspected early menopause.
November 2021 turned to December. Her young family drove from Avondale, Auckland, to her parents’ place in Hawke’s Bay.
“I walked down the road and over a bridge, to go for a swim. And in that short space of time I was completely drenched in blood,” says Pippa, 39.
She kept haemorrhaging on the drive home. On arrival she messaged her GP: “I cannot be held hostage by my body for any longer.”
Pippa, who is Ngāi Te Rangi, finally saw a specialist in February 2022. She looked to the ceiling as a biopsy was taken, and felt the room go still.
A more senior doctor was called in.
“The room went quiet again,” Pippa says.
“She said, ‘We’re just going to get you down off the table and have a chat.’”
The cervical cancer was graded as Stage 3, and in May last year, the mother of two began radiation and chemotherapy.
Her tumours shrank away. She didn’t suffer bad side-effects, and kept working a new job at Curative, a creative agency focused on social change.
“I was like, ‘Oh, that was pretty easy - job done.’”
However, a few months later it became uncomfortable to sit. A new tumour had grown, and cancer had reached her groin and lungs. She was Stage 4 - incurable.
As a trained social worker, Pippa always imagined her years working in hospice care would prepare her for such a blow.
“But you don’t get it at all,” she says.
“It’s all the losses that haven’t happened. You visualise being there when your kids graduate high school. What you’ll say at their 21st, their wedding... being a grandparent.
“The dumb thing is, none of us have that security. We’re so conditioned to expect that as a right - that we’ll grow to be old and grey.
“But there’s more certainty now that I probably won’t be there for those things.”
‘Nothing’s going to fix it’
Pippa started palliative chemotherapy and went on the immunotherapy drug pembrolizumab (branded Keytruda).
She’d had routine smears in 2013, 2017 and 2020, which came back as normal - unusual, because cervical cancer is usually preceded by at least 10 years of pre-cancerous abnormality.
In April last year, her gynaecologist oncologist asked the National Cervical Screening Programme (NCSP) - part of Te Whatu Ora Health New Zealand - to recheck these results.
The answer came back in late December: both her March 2017 and February 2020 smears were misread.
“The penny dropped halfway through the conversation,” she recalls.
“‘My God - you never needed to be in this predicament. And nothing is going to fix it.’”
Her specialist lodged an ACC claim, writing that the 2017 and 2020 smears “were misclassified and would have warranted intervention [that] would have picked up the cancer potentially at a precancerous stage, or a much earlier stage”.
“This injury/missed diagnosis has significantly limited her life expectancy to 12 to 18 months... she has two young children.”
Pippa couldn’t fathom how such a devastating mistake happened, twice in a row.
A friend offered to investigate. As sixth formers, she and Elizabeth Heaney bonded in drama class, and oscillated in and out of each others’ adult lives, snatching time to catch up amidst busy careers - Heaney as a litigation lawyer - and being parents.
Heaney’s contact book included Antonia Fisher, KC, who, decades earlier, represented “Patient A”, the woman who sued Gisborne pathologist Dr Michael Bottrill after he misread her smears between 1990-1994.
A Government inquiry eventually found Bottrill misread nearly 2000 slides. Dozens of women developed cancer, and some died.
More than 20 years later, Fisher (who with Heaney is acting for Pippa for free) contacted Dr Margaret Sage, the NCSP’s clinical lead for pathology.
The programme began an investigation, as did Te Toka Tumai Auckland (formerly Auckland DHB), which contracts the lab at fault, the Anatomic Pathology Service (APS).
ACC got expert opinion from Associate Professor Peter Sykes, a gynaecological oncologist, and pathologist Dr Cynric Temple-Camp. Both agreed with the NCSP assessment (done by Sage) that Pippa’s 2017 and 2020 smears were misread.
The organisation, however, wanted to account for hindsight bias - overestimating one’s ability to have foreseen an outcome.
It ordered a blinded review - Pippa’s slides were disguised among 40 from other women, and screened by three other technicians.
Pippa learnt of this extra hurdle on March 24, months after her claim went in.
The delay mattered. Her pembrolizumab isn’t government-funded, and each three-week cycle costs about $1200 for the drug alone.
Pharmaceutical giant Merck Sharp & Dohme caps the total amount Kiwi patients pay at $69,000, including GST - a threshold she reached some time ago.
Cycles (she’ll remain on the drug for two years) incur significant extra charges for administration, six-weekly specialist reviews and consultations.
The cost is impossible for her and husband J.D., a science teacher and Dean at Liston College.
In ACC limbo, they turned to her parents - something that causes Pippa tremendous guilt, particularly because their property in Puketapu, Hawke’s Bay, was flooded in Cyclone Gabrielle.
“They now have their own cashflow concerns... it’s money that could have been spent on their earned retirement. I don’t know what compromises they’re making.”
Her mother, Nicola Midgley, says there was no hesitation.
“She and J.D. were planning to mortgage their house to pay for it... even if we couldn’t have afforded it, we would have found some way to do it ourselves,” she says.
“For families who are not [able to], this must be dire. They have to set up Givealittle pages... it makes people feel really humbled, but how else do they go about it? All their life savings, and perhaps their parents’, go on a punt that this will give some extension of life.”
In Pippa’s case, pembrolizumab appears to have been crucial - on March 6 she posted to Facebook, celebrating a C.T. scan that didn’t detect cancer.
“You heard me right,” she wrote. “None. Gone. Nada.”
Over 100 congratulatory comments followed. Friends sent cake, champagne and flowers. She felt she’d misled people.
“While it is gone, it’s a sneaky f***er and will eventually make itself known again,” she wrote of the disease, in an edit to the post.
“Could be months, years or decades. No one knows. This is not what you call ‘remission’. It’s hard to explain, but hey - for now I’ll take it!”
That reality sharpens moments of happiness, to the point of pain.
“These days feel so much more magic and special,” Pippa recorded when Bea turned 7 in May. “It made my heart warm and fuzzy and my eyes very leaky to have seen you among your friends having such a great time yesterday.”
In June, it was a message for Jarvis.
“TEN. My dude. Such a vibrant guy and a special sweetness. We mentioned the next 10 years being the most exciting times. I can’t wait to see. Gawd I love you.”
Pippa gets three-monthly scans, followed by “terrifying” appointments to learn the results. Radiation and chemo are unlikely to be offered when cancer reappears.
“They’ve already fried the bejesus out of those places, so it would do more damage than good,” Pippa says.
“You think about how aggressive it might continue to be - you’re here one day, then two months later, that’s it. It’s a false sense of security at the moment, you try to live in the present but I’m such a pragmatist, I’m also trying to prepare - to do all the things I would have done in the future.
“The day the confirmation comes, I worry that it’s not going to be long after that. It seeps into everything. Every moment - coming to Jarvis’ football game and thinking, ‘It’s end-of-season soon, am I going to be here for the next one?’
“Some days you can brush it off. Other nights I’ll scream into a pillow so I don’t wake the kids.”
Shifting to HPV testing
About 160-180 New Zealand women are diagnosed with cervical cancer each year, and around 50 die from it.
Those rates were much worse before the national cervical screening programme began in 1990, but progress has plateaued and, in some areas, reversed.
Until recently, women aged 25 to 69 were encouraged to be screened every three years, but a lack of Government funding meant most had to make a “co-payment” of up to about $100.
Three-year coverage is below the target of 80 per cent, at 68 per cent as of July. This drops for Māori (55 per cent), Pacific (54 per cent), and Asian (62 per cent).
Screening has been done by a speculum examination (smear test), which collects cells from the cervix that are then analysed in contracted laboratories.
Last week a major shift in approach began - rolling out testing for high-risk human papillomavirus (HPV), which are viruses that have the potential to infect cervical tissue.
HPV is common. Approximately 80 per cent of adults will have an HPV infection in their lifetime, which usually resolves and clears itself within two years. However, in some cases, it persists and causes cancer.
Under the new HPV testing programme, women can do a vaginal swab themselves, at a health centre (a clinician will take the swab if preferred), or at home. It is a better test, allowing the routine screening interval to be extended from three to five years.
Younger New Zealanders can also be protected from cervical and other cancers through HPV immunisation.
Pippa’s misread smears happened in the old system.
In May, she received a letter from Dr Jane O’Hallahan, the clinical director of the national screening unit, giving an account of what happened.
Her slides were pre-screened with an automated device, which finds 22 microscopic fields of view most likely to contain abnormal cells. These were then checked by the cytoscientist or cytotechnician.
Human error, twice in a row, allowed her cancer to develop unnoticed until the bleeding began.
Internationally, detection of high-grade lesions (cells that appear very different from normal cells) ranges from about 50 to 80 per cent for a single screening.
“The sensitivity of screening in New Zealand laboratories is estimated to be around 70 per cent,” O’Hallahan explained.
“While this sounds low, cervical cytology screening works as well as it does because there is usually a long in-situ phase (often 10-plus years) of high-grade lesions before invasive cancer develops, allowing multiple screening events where high-grade change can be detected.
“The prediction is that regular cytology screening prevents about 90 per cent of cervical squamous cell cancers, the type of cancer that Pippa has.”
The move to “highly sensitive” HPV testing will help prevent future tragedies, O’Hallahan wrote.
“Missed cases will still occur but the frequency of these will be lower.”
True partnership
For a time, Pippa asked her oncologist to consider another patient when booking her appointments.
J.D.’s mum, Drina, had endometrial cancer, which took her life in June.
“She was under the same oncologist, and we asked them to schedule our appointments side-by-side, so J.D. could sit with his mum in one, and then sit with me in the other,” Pippa says.
“I can’t believe how he’s managed to cope.”
Pippa spotted that strength and concern for others early. They met long before Tinder, on NZDating.com. Pippa figured J.D. was out of her league, but their bond was obvious from the first dates, including mini golf on Tāmaki Drive.
“His ability to remain focused and hopeful is something to be rivalled. We’re a true partnership - he gives and gives. Just like his mum was, he is always in service to others and he has held things down for us when I have been spiralling,” she says.
“J.D. is my rock. He’s home... the thing I have really felt since all this, is how intense all the emotions feel with each other. I have always adored him, laughed with him - and felt frustrated with him too - but now when we feel these feelings, we really feel them so intensely.”
Like Pippa’s parents, J.D. is more optimistic that the cancer won’t come back. He can even occasionally forget its shadow - teaching rowdy teenagers has some silver linings.
“But at the same time, it takes a huge amount of effort and willpower, and resilience. We both have those moments where we are just crying and contemplating the what-ifs,” he says.
That mental burden is also physical for Pippa, who has recently been in hospital with side-effects from radiation damage.
“If you meet Pip she wouldn’t be giving too much away - how uncomfortable she might be some days. I’m so proud of her, in terms of how she’s dealing with it,” J.D. says.
“I couldn’t imagine my life without her. It is going to be... those thoughts sneak in. I try to bury them deep.”
Delay ‘makes you cry’: expert
On July 26, ACC told Pippa it was granting cover - all three of the screeners in the blinded review detected abnormality in her 2017 and 2020 slides.
It released the expert advice from Dr Sykes.
If the 2017 slide was accurately read, Pippa would have had a colposcopy (examination of cervix cells using a microscope), Sykes wrote. The precancerous cells or early cancer would be excised, possibly followed by a hysterectomy (removal of the uterus).
“These treatments are associated with a low risk of serious morbidity and a cure rate of over 90 per cent,” Sykes advised.
Pippa’s cancer would probably have been Stage 1 at the point of her 2020 smear, and treatments - including a radical hysterectomy and chemotherapy - are, overall, associated with cure rates of over 80 per cent.
A misread smear that allows cancer to develop is devastating, but the likelihood of such a mistake “is extremely low”, Sykes advised.
However, when those tragedies do happen, there’s been no system in place to tell the women involved, an investigation into Pippa’s care by Te Toka Tumai Auckland discovered.
Each laboratory in the cervical screening programme gets a six-monthly report of all patients diagnosed with cervical cancer or precancerous lesions, and a list of smears done in the past 3.5 years.
They are expected to undertake a “look-back” review for each patient.
“This process occurs some months after the diagnosis and there is no current system that involves notification of the patient or the referring clinician,” the review report found.
“Currently, there is no systematic process in place to manage cancer cases where previous cytology slides have been reviewed and upgrades discovered.”
Even after Pippa’s specialist requested a review, she was deliberately kept in the dark when the results came back on September 9.
Days earlier, she’d learnt her cancer was back and incurable, and her radiation oncologist “did not think that this was the right time to inform Pippa”, the Auckland report revealed, with their “focus on supporting Pippa through her palliative treatment”.
She was finally told on December 29 - only then could she lodge an ACC claim.
“Whilst there has been tremendous response to immunotherapy, it has come at considerable cost because it is not publicly-funded treatment. Pippa has suffered emotionally, physically and financially as a result of both the cervical cancer diagnosis and the delay to an ACC decision,” the report noted.
From next year, the NCSP will audit all cases of cervical cancer on an ongoing basis, including reviewing smear results from the previous 3.5 years, if they were reported as normal. Women will be told of the outcome if they wish to be.
Te Toka Tumai Auckland has requested Pippa’s case be used “as an example of the issues that require consideration” in this audit. (Pippa has also complained to the Health and Disability Commissioner, a process that can take years.)
Misreading of smears mostly happens when abnormal cells don’t make it on to the slide, including during transfer from lesion to sample, sample to vial, and vial to slide.
In Pippa’s case, abnormal cells weren’t spotted or were misinterpreted when her slides were examined.
Staff at APS, the lab at fault, screen an average of about 70 cases per day, for four days per week. The cytoscientist and cytotechnician involved “were within the accepted sensitivity range” at the time they checked Pippa’s slides, the Auckland report found.
HPV testing should increase the overall sensitivity of screening from around 75 per cent to 95 per cent, the report stated. If high-risk HPV is detected then follow-up testing is needed, such as a smear (cytology) test, or colposcopy. Reduced demand will allow each smear to be reviewed by two scientists.
The change to HPV testing should significantly reduce false negative results, the Auckland report stated, but not eradicate them.
“Continued education of smear takers and General Practitioners to highlight the limitations of the screening system remains of utmost importance.”
Knowing those limitations shouldn’t put women off from being screened, stresses Pippa. Rather, it underlines the importance of doing so regularly, and not delaying an HPV test.
Screening was to shift to HPV from 2018 - which would have been in time to detect Pippa’s cancer in 2020 - but has been repeatedly put back.
(“Delays... will result in a significant number of otherwise-preventable cervical cancers,” warned a 2018 Parliamentary review.)
Modelling for the Ministry of Health in 2016 showed HPV screening would reduce both cancer incidence and mortality by 16 per cent, if participants were largely unvaccinated - about 25 cancer cases and 10 deaths prevented every year.
The actual impact will be much bigger, because health authorities expect giving women the option to self-test with a vaginal swab will greatly lift screening coverage.
Professor Bev Lawton, founder and director of Victoria University’s Centre for Women’s Health Research - Te Tātai Hauora o Hine, is part of a group of health workers, researchers, scientists and advocates who have lobbied and scrapped for the change.
The National Government in 2016 announced the change to HPV testing from 2018, but it wasn’t ready when Labour took power in 2017, nor prioritised afterwards.
“I think it became a political football,” says Lawton, a member of the screening programme’s action and advisory group.
“We’re angry about it. It’s unacceptable. But, really, it makes you cry.”
(On the delays, Te Whatu Ora told the Weekend Herald: “This is a significant change and required a robust consultation, planning and development process, which began in 2014.”)
Lawton (Ngāti Porou) says the change needs bolstering by a strategy to eliminate cervical cancer, including through lifting vaccination rates - presently at 71 per cent for the 2009 birth cohort - and making screening free.
Currently, screening is free only for women aged 30 and older and who haven’t been tested ever or in the previous five years, Māori, Pasifika, and community service card holders. (Asian women recently lost this entitlement.)
Labour last week pledged to make screening free for all women if re-elected, which will cost $20 million a year. National’s health spokesman Dr Shane Reti says the party “supports the general direction” of that policy, but wants details.
Lawton and others are pushing for cross-party agreement before the October 14 election.
“We do not want this left in the political wilderness again.”
Legacy
ACC last week reimbursed Pippa for most of her pembrolizumab costs to date. It will also fund home and childcare help, and assess her impairment to calculate a lump sum payment.
She fears the time taken (her claim was lodged on January 10) means others who cannot self-fund medication could die awaiting a decision, or while navigating the “endless” form-filling.
Having legal support has been crucial, she says, even as someone who has worked in and researched the health system.
“It feels as if they stalled with the hope I might just die, instead.”
ACC’s deputy chief executive of service delivery, Amanda Malu, says Pippa’s claim “unfortunately took longer than we had hoped”, but doing the blinded test “gave us the clinical information we needed”.
“We recognise this was a stressful time for her and her family... we’re confident that our staff worked as quickly as they could, given the clinical information needed.”
Pippa’s next scan is due in November.
We fit interviews for this article around work and home life - J.D. cooks dinner during one, while Jarvis and Bea watch TV upstairs - and Pippa finds time to answer dozens of follow-up questions.
“If I was sicker, I could be at ease with not doing anything. But I’m well enough at the moment that I don’t think I can live with myself if I just let it go,” she says.
“I don’t have faith-based spirituality. But part of spirituality is about having a legacy or having hope, and maybe this is a piece of legacy work for me - knowing I’m leaving behind something that’s going to help the next person.”
Nicholas Jones is an investigative reporter at the New Zealand Herald. He won the Best Individual Investigation and Best Social Issues Reporter categories at the 2023 Voyager Media Awards.