Last year, Tanya*, a 35-year-old from Gippsland in Victoria, went to her GP for routine cervical cancer screening. While she didn’t have cancer, she did require further testing – a colposcopy and a biopsy.

“It was a scary fast process,” she recalls. But for Tanya the fear was more around the testing process than the possible results. For more than 10 years she had avoided being checked for cervical cancer. “I was in a long-term relationship that was physically, mentally and sexually abusive. Due to all my experiences … the fear and anxiety of anyone touching me sent me into panic attacks,” she explains. “I got good at lying to doctors and would change doctors when questions kept getting asked.”

This year nearly 1000 Australian women will be diagnosed with cervical cancer. These women will undergo gruelling treatments and suffer the emotional trauma of a cancer diagnosis. According to statistics from the Australian Cervical Cancer Foundation (ACCF), as many as 250 will die.

But according to ACCF chief executive Joe Tooma, “Women shouldn’t be dying from cervical cancer in Australia today.” The problem is, as in Tanya’s case, not all adult women are being screened for this largely preventable disease. Although human papillomavirus (HPV) screening – a five-yearly test that replaced the two-yearly Pap smear test in December 2017 – is accurate, a whopping 43 to 44 per cent of women are either attending screening irregularly or, worse, not going at all.

Tooma explains there are several reasons that women are not being screened. “There are some women who feel that it is too invasive; some women have had a bad experience in the past and don’t want to go back.

“There is a lack of awareness, particularly in culturally and linguistically diverse communities. Some of these women don’t know that screening exists or understand what it is for.”

On top of this, there is also the persisting issue of embarrassment. A 2019 survey published by ACCF found that almost a third of women have delayed or avoided cervical cancer screening because they find it “awkward”.

The consequences of skipping the test can be devastating. Eighty per cent of women diagnosed with cervical cancer come from the group that is overdue for screening or has never been screened.

In Britain, where there has been a 54 per cent rise in cervical cancer among 25- to 29-year-olds, the development of a home-testing kit is being pushed as a solution to low screening attendance.

Jo Churchill, Britain’s Health minister, told parliament the home-testing kit would improve access to screening. “Nobody should be denied – we are committed to improving access for all women,” she said.

The home-testing kit, which includes a non-invasive urine test and a vaginal swab, is being developed at the Molecular Epidemiology Laboratory at Queen Mary University of London. Director Dr Belinda Nedjai told the Press Association she believes self-sampling could become the standard method for all screening. “The study indicated that women much preferred doing a test at home than attending a doctor’s surgery,” she said.

There are no plans to introduce a home-testing kit in Australia. However, there is already a system for self-collection in place. The key difference is that in Australia, self-collection (a vaginal swab) needs to be taken at a medical clinic.

Professor Marion Saville is executive director at the VCS Foundation, which aims to reduce the impact of cervical cancer. “A private environment should be provided. The woman [taking the self-collection swab] would usually go into a bathroom, or behind a curtain. Some women request assistance from their nurse or doctor, if they have a disability for example,” she explains.

The scheme, introduced in 2018, is available to women aged 30 and above who decline a test with their GP and either are two or more years overdue for screening or have never been screened.

Saville, who was recently made a Member of the Order of Australia for her significant service to women’s health through cervical screening initiatives, says that trials show self-collection is much more acceptable to many women than a traditional pelvic examination.

“[Self-collection] overcomes a lot of cultural barriers. It overcomes barriers associated with previous trauma and it puts women in control of their own bodies,” she says.

The scheme, which saw 2571 eligible women screened in 2019, has been slowed down by logistical issues; however, Saville says she expects this to be resolved and for self-testing to become a more popular option. “I think this is the future of screening,” she added.

But should women be able to take the swab in the privacy of their own home? Saville says that while it is crucial for women to feel empowered by the process, she believes the test should stay within a clinical setting.

“For women making the decision to participate in cervical cancer screening, one of the most important factors is a recommendation from a healthcare practitioner who they trust, whether that is a doctor or a nurse,” she says.

Trials conducted in Australia found that when women who have previously declined a Pap smear or HPV test – which is taken in the same way as a Pap smear – are offered self-collection by their healthcare provider, the uptake is about 85 per cent.

“Sending a home kit to women who are under-screened has an incremental benefit in terms of participation, but handing a swab across the desk in a clinic results in a transformational increase in screening,” says Saville.

One of the issues with self-sampling that Saville anticipates is that women who return a positive result will still need to attend a follow-up, a pelvic exam for cytology or a colposcopy and, in some cases, a biopsy.

“For whatever reason they found the [pelvic exam] difficult in the past, they’ll continue to find it difficult,” she says.

However, Saville notes that while women who have a positive screening through self-collection need additional support and information, the trials have been successful in progressing them down the management pathway.

Two new studies published in The Lancet predict that 74 million cases and 62 million cervical cancer deaths during the next century can be averted with HPV vaccination and timely screening.

Saville hopes that self-collection will play a role in addressing the cultural barriers that prevent women presenting for screening and in making the global scale-up of screening more technically feasible. “The [World Health Organization] draft screening target is that 70 per cent of women should have had at least two screening tests by the age of 45 by 2030,” she says.

“It’s hard to imagine that this would be possible using a traditional pelvic exam but self-collection improves the chances of success by making the screening test more culturally acceptable and much more scalable.”

Self-collection may be the future but, in the meantime, Joe Tooma thinks that an easy way to increase the number of women attending screening is to give them more control of the process. “The ACCF has developed a cervical comfort checklist, to empower women and make the screening more comfortable,” he says. “In 2020 no woman should die of embarrassment.”

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