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Since we started working on Eve Kit, a variation of this question comes up all the time.
As an easy example, this was the first comment to an article that Michelle Da Silva wrote about home screening in NOW Magazine:
It does sound a little judgey, but it’s also a really good question. Why don’t people do something that could potentially be life saving?
Before I get into that, some context:
A Pap (or cytology) test looks for abnormal cells in a person’s cervix (the opening to the uterus), which could potentially indicate cervical pre-cancer or cancer. These abnormal cells are caused by high risk strains of the Human Papillomavirus (HPV), which is quite common.
In Canada, the Pap test was first implemented as a screening test in the 1950s and began to be associated with family planning in the 1960s, when oral contraceptives became available (1). The test has widely been acknowledged as a very successful Public Health initiative, significantly reducing the number of recorded cases and deaths from the disease since the 1980s (2). Cervical cancer is now one of the most preventable cancers, and in theory we should no longer see any deaths from the disease in Canada.
But even as a super successful preventive health program, the Pap testing system hasn’t been able to reach everyone. There’s still a gap in the cervical cancer screening system — in part due to a “usability” issue of screening at a clinic. In order to get a Pap test done, cervical cell samples need to be collected by a healthcare professional at a clinic. This was recommended on a yearly basis until 2013, when guidelines changed to once every 2–3 years (depending on the province).
On average, screening at a clinic isn’t a problem for 2 out of 3 people in Canada. But for the other 3 million+, this can be problematic for either logistical reasons, or more personal ones.
On the logistical side, 15.5% of Canadians don’t have access to a regular medical doctor (3). For those that do, being geographically far away from your provider, finding time during the week to get there, and absorbing indirect costs like babysitters and parking can all be additional inconveniences and barriers that result in non-participation. If you think about people with disabilities for example, the logistics become ever harder.
On the other side — just as importantly — are very real issues around emotional and cultural access. Over the years of working on Eve Kit, I’ve had the opportunity to listen to many candid experiences around this.
Everyone has a different story and reaction to their experiences , which I’ve come to realize isn’t always correlated to what we might perceive as a “severe” problem.
Here are some examples of experiences that have all led to the same outcome of someone no longer getting screened regularly:
During a young woman’s first Pap test, her doctor was unable to find her cervix after 15 minutes of trying and then a second doctor was also unable to find it after another 10 minute of trying. A trans man was asked why he wanted a Pap, and he had to explain in front of a crowded waiting room. An immigrant woman refused to be examined by her male doctor, but also refused her daughter’s suggestion of finding another doctor. A woman experienced a medical related trauma that was so bad she now refuses care, or even communication, from any medical professional at all.
By nature, pelvic exams are sensitive. It involves touching and inserting things into an area most would consider very intimate. It can sometimes evoke strong emotions — before, during or after — even if it’s in a clinical setting and with a trusted healthcare provider.
I think Kate Sloan of Kate Writes About Sex summed up her own and others’ reservations well:
"I know from firsthand experience that navigating the healthcare system when you have an anxiety disorder is tricky: I’ll often avoid getting help because the process of accessing care makes me anxious. This can be doubly true for people whose bodies or minds are often stigmatized or at least misunderstood by their doctors: trans and gender-divergent folks, survivors of sexual trauma, folks whose weight puts them outside the range of medical acceptability, and so on. All of these types of people may avoid or postpone getting the medical care they need, out of fear of what will happen when they walk through those clinic doors."
To me, if we are to have empathy towards these very real challenges — whether logistical, personal or whatever-al, the answer to the question “why can’t people just get Paps” has to be, “how do they want screening to be delivered?”
Until then, we’ll always be stuck in status quo. Like most things, even a successful program like the Pap test eventually hits a plateau, and it takes more effort (or a different strategy) to go that extra mile.
Luckily, a new way of testing for cervical cancer called HPV testing could enable us to to make big strides in going that extra mile.
In 2008, Dr. Harold zur Hausen won the Nobel Prize in Medicine for discovering that certain high-risk strains of the Human Papillomavirus (HPV) are the cause of cervical cancer. There’s been oodles of research on the topic since, and we now know that without the presence of HPV, the chances of cervical cancer developing is almost nil.
This research has led to all sorts of fantastic new prevention methods like the HPV vaccine, which can prevent the most common HPV strains (but not all strains, so screening is still important). It has also led to a new concept that if you test for HPV and are negative, then a Pap test may not be necessary because your risk of cervical cancer is low (4).
Another huge benefit is that samples for HPV testing don’t necessarily have to be collected by a healthcare professional — if someone collects their own sample, it can also be tested for HPV with high accuracy (5). And in study after study, people who don’t screen regularly have indicated that they would both prefer to collect their own samples, and would participate more in screening if they could (6).
The opportunity to bridge the gap by enabling people (who don’t or won’t screen at a clinic screen) to screen themselves is exactly what our team — and many other wonderful people around this country — are excited about and dedicated to doing.
Yes, people should get Paps. No, not everyone gets them. But yes, there are other ways to screen now. Cervical cancer is awful and preventable, and we hope and strive to never see another case in this country.