The lack of accessible Pap smear clinics creates health barriers for wheelchair users

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Over the past year, the wait to receive Pap smear results has been on the rise in British Columbia, leaving many people with ovaries feeling anxious about the state of their cervical health. 

However, medical delays and lack of accessible testing is nothing new to Jocelyn Maffin, who was born with a tumor on her spine and has used a wheelchair since she was eight. 

Currently the associate director of service delivery at Spinal Cord Injury BC, a nonprofit that serves people living with spinal cord injuries and similar disabilities, Maffin has always felt she’s been treated differently by medical professionals and uninformed about important testing necessary for people with ovaries, one of which being a Pap smear. 

“I was near the end of my 20s before I had my first Pap test,” Maffin says. “There’s a whole routine of self care and preventative health that didn’t start till quite a bit later than it should have in my opinion.”

A Pap smear is a procedure to test for cervical cancer in people with ovaries that involves collecting cells from the cervix. In B.C., it is recommended that people with ovaries 25 years of age or older get this test done every three years to screen for and detect abnormal cells early, halting the possible development of cervical cancer. 

Cervical cancer is expected to develop in one out of 168 people with ovaries, and one in 478 will die from it. In Canada, cancer is the leading cause of death among citizens and the disease continues to pose a large and growing impact on the country’s healthcare system. While anyone with ovaries can be at risk to develop cervical cancer, adults with disabilities are three times more likely to develop cancer than adults without disabilities, and more than 22 per cent of Canadians identify as being disabled. 

In B.C., there is only one clinic conducting Pap smears that’s fully accessible to wheelchair users, the Access Clinic at BC Women’s Hospital, located in Vancouver.

“I got my first Pap test at BC Women’s. I was always able to go back there, and they allow patients to re-refer themselves. It is a pretty rare service,” Maffin says. 

The clinic has all the equipment necessary to ensure wheelchair users can get a Pap smear done as safely and comfortably as possible, like exams tables that rise and lower, padded leg support troughs, overhead transfer lifts, and wheel scales, all of which Maffin says are not present in most basic primary care offices. 

“This is situated within a greater inequality related to access to primary care for disabled people,” Maffin says.  

“These are cancer screenings, and if anything prevents people from getting cancer screenings, that’s a problem.” 

Nancy Lin, a PhD student at the University of British Columbia’s School of Social Work who also practices as a clinical social worker, agrees that people with disabilities receive limited access to important healthcare services like Pap smears when compared to people without disabilities. 

“What I think is helpful when trying to conceptualize an inaccessibility is breaking down the steps that are involved in a Pap smear,” Lin says. 

For example, a person with a disability has to be able to undress their lower body, transfer their body from their wheelchair to the examination table, place their feet in the stirrups, and bend their legs and maintain that position for the entire procedure, Lin says. Then they must be able to transfer off the table back into their wheelchair and redress. 

“Inaccessibility is created when the person with disability has trouble completing any of these steps, and most critically when the clinic does not provide accommodations for the steps.”

Lin also says this lack of proper medical accommodations and accessible clinics can be related to barriers that people with disabilities experience. 

Specific medical barriers that are associated with physically disabled patients include poor socioeconomic status and a lack of health insurance, physical access difficulties like transportation, and physicians’ misperceptions around the need for cervical cancer screening among these patients. 

These barriers people with disabilities face can also come with assumptions and presumptions about sexual activity from the general public, but sometimes healthcare providers, Lin says. 

“It can be really difficult to access the healthcare services you need when your healthcare provider comes with already preconceived ideas about what you do and don’t do in your life,” she says. “Therefore, it can be hard to advocate for yourself and move beyond those kinds of attitudinal barriers.”  

Maffin has seen these attitudinal barriers throughout her life.

“I grew up with and went through puberty with my disability. I had family doctors, but nobody ever asked me if I wanted to start birth control or get regular checkups like Pap tests,” Maffin says. “I could tell I was not getting the same kind of gynecological care that my peers were. They weren’t having those conversations with me, and I didn’t know to ask.”

An additional component of accessibility around medical clinics Maffin doesn’t see enough is time.

“People with a higher level of spinal cord injuries might need more time to transfer [onto the exam table],” she says. “They might have muscle spasticity, and so you might need more time to position yourself in a way that is conducive to the exam.” 

This aspect of time goes beyond the clinic and into the logistics of scheduling an appointment and getting to and from a Pap smear exam. 

Lin says if a clinic is running behind on their scheduled appointments, it can be hard for people with disabilities to get to or home from them as transportation services like HandyDART run on a tight schedule. 

“So you might miss your ride home and that can become a whole day endeavor just for one appointment,” she says. 

“A lot of clinics also don’t have pre-screening procedures where they ask folks specifically what they need before their appointments so that the clinic can make preparations.”  

Another aspect that comes into play with the lack of accessibility accommodations is staff support and physicians who have a background in the challenges of people with disabilities. 

“One of the most common ways that people with disabilities adapt themselves to a lack of [staff] access is they end up bringing a family member with them, or a caregiver if they have one, to hold their legs, but it’s a very intimate exam,” Maffin says. 

It can be hard for people who don’t have a caregiver to find someone that they feel comfortable with to hold their legs up, she says.  

“In my case, because I grew up with my disability, one of my legs isn’t quite straight, so my foot points off a little bit. Even if I had help to hold my leg in the stirrup, my knees are too close together to get proper access, and so that’s both a time and an experience sort of troubleshooting,” she says. 

“In primary care right now, there isn’t time for that. Increasingly a lot of primary care clinicians don’t offer [Pap smears], and they leave it to other formats. Walk-in clinics don’t do it, urgent and primary care clinics don’t, and sadly, some of those clinics are the ones that have a little bit more of the accessible equipment.” 

Maffin also says it’s important for the physicians conducting the Pap smears to have some knowledge about the bodies and health of physically disabled people because their personal health care and exercise routines can look different from those who are able-bodied. 

“The standard advice for things like bacterial vaginosis or yeast infections is not going to work [for wheelchair users]. A clinician who only sees one [wheelchair users] who needs a Pap test, even if they could accommodate them, might not have been dialed into some of those nuances or [might] give the same kind of advice that [able-bodied people] might be given.”

Due to the overall lack of education wheelchair users receive and inequitable medical barriers they face, many people with physical disabilities don’t receive the health services they need. 

“When [Spinal Cord Injury BC] surveyed [wheelchair users for inhouse research], we asked if people were getting [Pap smears] and a good 50 per cent weren’t,” Maffin says. 

“It scares me to think that people with disabilities might be dying sooner. They’re preventable cancers that are not being screened for. I would not say that’s a large amount of people, but I do think we have to think about whether we’re willing to live with that.” 

Lin also says that the consequences of not getting a Pap smear can be very dangerous. 

“If you take a look at the healthcare repercussions of not getting cancer screening done, it’s actually really scary, and it’s really risky because we do know also that people with physical disabilities have higher rates of cervical cancer compared to people without disabilities,” Lin says. 

“Cancer screening is really important because it can prevent cancer by detecting changes in your body before those changes actually become cancer. So not only is not having equitable access an issue in and of itself, the repercussions of that are also really great.” 

While the Access Clinic does work to provide and conduct accessible Pap smears, this is just one clinic that serves the entire province, making it even more challenging for wheelchair users who live outside the Greater Vancouver area to get a test done. 

Maffin lives on Vancouver Island and says in most cases wheelchair users will turn to their family doctor for the testing, however if they are unable to provide it, patients will often need to take a trip to the Lower Mainland, which not only costs money, but additional time. 

“There’s a real conflict in whether this is something we should have centralized around the province, like one [fully equipt] centre in each major city, or should it be a standard for any primary care provider offering Pap [smears] to have the equipment and know how,” Maffin says. 

“Knowing how widespread populations are in B.C., I don’t think it’s fair that people with disabilities can’t just go to their family doctor and get the care that anyone else would. But that takes a system change in how primary care is funded.” 

Lin says the root of this issue is equitable health care and how it is not yet something that exists in B.C.

“The less we talk about it, the less attention gets put on it, and the less onus there is for policymakers to actually address the problem in both making sure that practices are equitable, but also that funding is equitable for issues,” Lin says. 

While Pap smears have traditionally always been conducted at a clinic, Lily Proctor, medical director of the BC Cancer cervical cancer screening program, says the medical agency is working towards making the actual tests more accessible. 

“BC Cancer has a pilot program for a self collected cervical cancer screening. So instead of doing a traditional Pap test which poses problems for patients with mobility concerns, this is a self collection,” Proctor says. 

Patients receive a kit with a swab to collect cells to test the strain of Human Papillomavirus (HPV) that can lead to cervical cancer.  

The BC Cancer Cervix Screening Pilot gives wheelchair users the opportunity to conduct these tests on their own wherever they feel comfortable. Interested patients can learn more about the pilot program and request a kit on BC Cancer’s website. 

“If Pap tests are accessible, then I think it would be much more likely that people will actually get them,” Maffin says. 

“If it provides a quality of information that people can act on and it can actually help prevent things close to or as well as a Pap test, then I foresee that being a closer, more immediate way to get some people with disabilities the option for that type of care.” 

While this pilot program is a step in the right direction, Maffin hopes more can be done in terms of increasing accessible health clinics that house proper accommodations.

“This is not just a Pap test issue, there are other things you use that equipment for. I do see it as an equity issue, and my deepest hope is that new accessibility legislation in B.C. and federally will have expectations for primary care and mechanisms by which to enable primary care physicians to have the necessary equipment.”