Who: Lezlie Lee Kam, outreach volunteer, Toronto
Dr Aisha Lofters, researcher, Toronto
What: With Canadian Cancer Society funding, Dr Lofters studied cancer screening rates among people like Lezlie, who have disabilities.
Why: Understanding screening rates is the first step in addressing the barriers that people with disabilities face in getting checked for cancer.
Lezlie Lee Kam, a Canadian Cancer Society outreach volunteer, understands the importance of cancer screening. But she also experiences the added barriers that people with disabilities face in getting screened. Lezlie has used a cane and walker for almost 10 years.
"When I go in for my Pap test, the first thing I'm told is to 'hop on the bed’," she says. "But it's very difficult for me to get up on the bed on my own, and help isn't offered to me."
Equipment isn’t the only challenge. Lezlie wants to see staff better trained in helping patients with different needs.
"Screening tests can be uncomfortable for anyone – you're at your most vulnerable at that time," she says. "But those of us with disabilities also have to deal with equipment that is not suited to us and staff who are not prepared for us."
With funding from the Canadian Cancer Society, Dr Aisha Lofters, a family doctor and researcher at St. Michael's Hospital, is studying cancer screening rates among people with physical and mental disabilities. She found that women with severe disabilities get screened for cervical and breast cancer at lower rates than women without disabilities.
“This is an issue of fairness. It’s not right that there are groups of people who are not receiving appropriate screening,” Dr Lofters says. “And as the population ages, even more people are going to be affected by disabilities.”
Dr Lofters suspects that there may be several reasons for the lower screening rates in people with disabilities, including challenges with equipment. But she is also concerned that doctors spend too little time talking with patients about cancer prevention, particularly when there are more immediate health concerns.
“People with disabilities already have complex healthcare needs. The last thing they need is to be diagnosed with advanced cancer on top of everything else,” says Dr Lofters. “It’s very important that we prevent and screen for cancer in this group.”
Lezlie agrees. “Screening is part of the whole package of care, and everyone should have access.”
Dr Lofters will next start examining the rates of colon cancer screening in men and women with disabilities. Ultimately, she wants to use this information to design programs that will improve access to screening.
Despite the challenges Lezlie faces, she stays up to date with all of her screening tests. But she knows that many people with disabilities do not and likely won’t until things change in the healthcare system to improve access.
"The healthcare system needs to make it easy for us to physically get screened,” she says. “Once equipment is accessible and there is training, appropriate language and more awareness, we'll be screened just as frequently as the rest of the population.”
The Canadian Cancer Society provides helpful information about government income programs, financial resources and other resources available to families struggling to make sense of the personal financial burden they face.