‘It’s not rocket science’: Could we banish cervical cancer?

Sunday, 6 October 2024

Emma Davies, pictured with her children Marlia, 7, Jake, 6, Iyla, 4, and Harry, 3, was too embarrassed to get cervical smears for more than a decade. When she finally got tested, they caught a cancer that might have robbed four kids of their mum.

**A year since the introduction of a “game-changer” self-test, cervical screening rates have increased, especially among Māori and Pasifika. But our “embarrassingly low” HPV vaccination rates mean the goal of banishing cervical cancer still seems a distant dream. *Nikki Macdonald investigates.***

More than a decade had ticked by since Emma Davies’ last cervical smear.

Her first one in her twenties showed up abnormal cells and she was advised to go back regularly. But she was embarrassed about someone poking and prodding down there. And then she emigrated from Britain to Auckland and never got around to it.

It wasn’t until a friend shared her cancer news earlier this year that she finally relented. By then, she was 38, with four children aged 3-7.

“I don’t want me kids to go without their mum, so that gave me the kick up the bum to go.”

Davies has signed a Cancer Society plea for free cervical screening for all, an elimination strategy and improved vaccination rates.

Two days after her 39th birthday, she got the call everyone dreads. While her first thought was “I’ve cancer and I’m gonna die”, the surgeon reassured her that, because they’d caught it early, they could remove it with a small operation.

And two weeks ago, she got the news every cancer patient lives for.

“Right now, I am cancer-free… It was a massive, massive relief. Because you’re in a bit of a limbo. You don’t know what the future is going to be.

“It’s also made me realise how lucky I am. Because if I hadn’t gone for that smear, it could be a different story. I’ll definitely be doing it regularly now.”

Because she hadn’t been screened in so long, Davies was one of a targeted few who didn’t have to pay for her test. But most still do. That’s just one thing experts say must change if New Zealand is serious about seizing a rare chance to wipe out a killer disease.

Killing off a killer

In 2018, the World Health Organisation announced a global goal to eliminate cervical cancer.

Dr Bev Lawton, director of Victoria University’s Centre for Women’s Health Research, says eliminating cervical cancer is not complex, but it requires effort and investment.

To achieve that, it estimated countries need to vaccinate 90% of girls against the cancer-causing virus HPV by the age of 15, screen 70% of women by 35 (and again by 45), and treat 90% of women with pre-cancer and invasive cancer.

With HPV vaccination rates above 80% and a funded national strategy to eliminate cervical cancer, Australia seems well down that path. New Zealand, not so much.

That frustrates health advocates, including long-time self-screening campaigner Professor Bev Lawton (Ngāti Porou), who heads Victoria University’s Centre for Women's Health Research.

“I get upset about it, because it’s simple. There are a lot of problems that are very complex. There’s nothing complex about this one.

“This is a win-win. You prevent cervical cancer, you save a lot of money, and you save a lot of personal burden for families, because these are young women ‒ the median age is 45.

“So we have a real opportunity here. And I'm excited by it… We need a strategy to eliminate cervical cancer. And it’s not rocket science. But it needs to be funded.”

Starting with making screening free for all.

“That’s been our major issue ‒ why isn’t this free?”

The forgotten cancer

Angela Kirkwood always had regular smears, and never had an abnormal result. In 2014, she started bleeding after sex, but put that down to her endometriosis.

But then it got worse. The gynaecologist found an aggressive tumour beyond the reach of a smear. It had already spread to her lymph nodes.

At 32 ‒ with kids aged 8 and 11 and a husband who’d suffered a brain injury two years earlier ‒ the Nelson mum was given a 50/50 chance of surviving five years.

“My wish was to see them become teenagers.”

A hospital planning co-ordinator, she worked through the three months she spent in Christchurch having chemotherapy, radiation and brachytherapy. With her husband on ACC, she couldn’t afford not to.

The treatment bought her six years disease-free. But in 2020, the cancer returned and she took seven weeks off for major surgery. Again she got the all-clear. But again it came back ‒ in her pelvis.

When the last treatment option was losing half a leg and facing constant pain, the 42-year-old chose to make the most of the time she still has.

“I'd rather have quality over quantity.”

She and husband Brian took a month’s trip around Ireland, Scotland and France to make memories, which mysteriously caused two of her tumours to disappear and another to shrink. But she’s still incurable. Her daughter, now 21, has come back from uni to be with her.

“We seem to be the forgotten cancer,” Kirkwood says. “I think some people think that cervical cancer ‒ it’s just an abnormal smear, nothing major. You get it cauterised or cut out, and you’re fine. Well, I actually have a death sentence now. I’ve done everything I could, and I will die from this.”

The good news

Way back in 2016, New Zealand decided to switch from nobody’s favourite doctor’s visit ‒ the speculum-wielding pap smear ‒ to the HPV test, which can detect potential cancers earlier.

The business case for HPV screening predicted the switch would prevent 305 cancer cases and save 103 lives.

But it wasn’t until September 2023 that the HPV test was finally introduced. It was made free for Māori, Pasifika, Community Services Card holders and women who have not been screened in the past five years.

In the past year, eight out of 10 women having cervical screening chose the self-test swab.

And a new self-test swab option was added, in the hope of reversing the drop in screening among women who found smears unacceptably invasive.

A year on, the changes seem to be working. For the first-time since pre-Covid, the overall screening rate exceeded 70%.

But the gains are even more significant among Māori and Pasifika, who have the highest death rates from the disease. While still lower than the screening rates for Pākeha New Zealanders, rates for Māori increased six percentage points to 62% and Pasifika rates rocketed up 11 percentage points to 67%.

Auckland gynaecologist Sarah Corbett does follow-up colposcopy tests for suspect screening results. On one day recently, almost every patient at her clinic had previously been unscreened for years, tested positive for high-risk HPV, and was found to have pre-cancer cells.

“It really illustrated to me what a great test it is. And that people can do it self-taken as well has been a real game-changer.”

Those patients can then have a minor treatment to remove the pre-cancer cells. Left untreated, a third would develop invasive cancer. By the time they presented with symptoms ‒ usually bleeding ‒ they might need surgery, chemo or radiation therapy. If it was still curable at all.

The new self-test seems to work particularly well for Māori and Pasifika patients, who have worse survival rates, Corbett says. “So that’s a huge win.”

The national improvement is mirrored in hard-to-reach Northland, where Māori screening rates rose by eight percentage points.

While there’s no hard evidence linking that to self-testing, patients definitely objected to the old, invasive smear, says Sandra Wilkinson, of Northland primary health organisation Mahitahi Hauora.

“That is actually very good… Being only a year in, things could only get better.”

Cancer Society co-medical director Kate Gregory says New Zealand’s HPV vaccination rates are embarrassingly low.

But even with free testing, in a low-income region where many live miles from health services, and may not be enrolled in a GP practice to get testing callbacks, accessing screening can still be a struggle, says Mahitahi Hauora director of nursing, Angela Keung-Hobson.

“One of the access barriers, especially rurally, is being able to get to a clinic. Because a lot of people don’t have jobs, so they don’t have money to put petrol in vehicles.”

National Public Health Service director of prevention, Alana Ewe-Snow, says eight out of 10 women being screened have opted to self-test and the early improvement in the number of unscreened or out-of-date women getting tested is “encouraging”.

Further initiatives include expanding the screening workforce and translating information into Asian languages to improve low coverage among Asian women.

The bad news

By the time women end up on Nelson medical oncologist Kate Gregory’s doorstep, they’re usually in a bad place, with advanced cervical cancer, needing chemotherapy. Her youngest patient was in her twenties.

The options for late-diagnosed cancer ‒ radical surgery to remove the cervix and often the uterus, and/or chemotherapy and radiation treatment ‒ can be life-limiting, says Gregory, who is also co-medical director of the Cancer Society.

“It impacts on fertility, it impacts on people’s sex lives. They can go through a premature menopause. These are really difficult, challenging treatments for patients… Clearly the earlier you can diagnose a cervical cancer, the better ‒ that’s the rationale for screening.

“Even better again, is to stop anybody getting cancer. And that’s where the HPV vaccine comes in.”

Targeted at children in years 7 and 8, the HPV vaccine is mostly given through the school-based immunisation programme. It prevents the nine virus strains that cause most cervical cancer, as well as genital warts and throat, penis and anal cancers.

Don't forget to sign the consent form to help protect your child against most HPV cancers. (First published February 2018)

But New Zealand’s vaccination rates are “embarrassingly low”, Gregory says.

In Australia, 86% of girls and 83% of boys had received one dose of HPV vaccine. In New Zealand, the latest quarterly coverage report shows just 44% of eligible kids had completed the vaccination regime. For Māori in Northland, that rate was 26%.

Almost two-thirds of all eligible kids received one dose, but that fell to less than half (48%) for Northlanders.

Lawton says not enough effort and investment has been put into the programme since it was launched in 2008.

That’s despite research in Scotland, which has high rates, showing no vaccinated women have developed cervical cancer. “Isn’t that pretty exciting?”

Vaccinologist Helen Petousis-Harris says it’s “really disappointing” how far HPV vaccination rates have fallen. Like many, she says Covid has caused distrust of both vaccines and health services.

The programme needs ongoing promotion and awareness campaigns, she says.

Australia last year switched from a multi-dose regime to a single dose. That could be an option, but you’d need to be confident that the amount of virus circulating has reduced enough to make one dose effective, Petousis-Harris says. And even New Zealand’s single dose coverage is low.

“The easier you make things, the better the chance of delivering them… But trust is still going to be in there.”

National Public Health Service central regional director Paula Snowden acknowledges our HPV vaccination rates are so worryingly low that Health NZ last year commissioned an independent review of the school vaccination programme.

Unlike ubiquitous breast cancer promotions, Angela Kirkwood feels cervical cancer is the forgotten cancer, as no-one wants to talk about it.

A resulting action plan promises an “urgent uplift”, Snowden says.

Bucking the low coverage trend is the greater Wellington region, with 62-64% of kids fully vaccinated, and 69-75% receiving at least one dose.

Snowden says that team works to educate teachers and parents before beginning vaccinations.

And instead of the usual model of giving tetanus, diptheria and pertussis vaccinations in year 7, then two HPV doses in year 8, the Wellington, Hutt Valley and Wairarapa teams do all the jabs in year 7, and use year 8 for catch-ups.

One of the action plan’s recommendations is to copy that model, Snowden says.

What would it take to eliminate cervical cancer?

Gynaecologist Helen Paterson offers colposcopies to Otago and Southland women from her Woman's Health Bus.

One of the first things Kirkwood did after her cancer treatment was get her son vaccinated. The possibility of sparing others what she has endured is a no-brainer.

“That is the biggest thing for me. It’s not a cure, but we could prevent other people from getting it. It’s a cancer that could, in my children’s lifetime, be preventable.”

Both Kirkwood and Davies signed the Cancer Society’s open letter to Health Minister Shane Reti calling for three key actions to end cervical cancer: funding an elimination strategy; increasing HPV vaccination coverage among school children to 90%; and extending free screening to all eligible women.

“It shouldn’t matter what race you are, what age you are ‒ it should be free,” Kirkwood says.

And the $20 million guesstimated annual cost would quickly pay for itself, says Gregory.

“The cost to the country of a young woman getting cervical cancer, having to be out of the workforce and not being around for her kids while she’s having treatment, potentially dying of the disease ‒ that would far outweigh any cost.”

Corbett believes eliminating cervical cancer is “100% possible”.

“Every time we see a cervical cancer, it's completely preventable, usually, and there's been a failure of the system somehow. So if we get the system right, then it's definitely possible.“

That would require increasing vaccination rates, making screening free and reducing smoking in young women. She’d also like follow-up colposcopies moved out of hospitals. Gynaecologist Helen Paterson, for example, offers them from a mobile women’s health bus.

Asked if elimination is realistic, Keung-Hobson, of Northland’s Manatahi Hauora shakes her head. So long as vaccination and screening are a choice ‒ and they must be ‒ some will always opt out. Colleague Wilkinson is more optimistic.

“They eventually eradicated smallpox, so anything's possible, If you get the uptake and buy-in.'

Reti’s office says Health NZ has provided preliminary costings for universal free screening, but he needs further analysis before deciding. Health NZ is also considering developing an elimination plan.

Lawton, meanwhile, is losing patience.

“When we don’t have a strategy to eliminate cervical cancer and we don’t have the levels of vaccination we need, or screening, women will die of a preventable disease.

“We just need to get the job done.”

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