People with Disabilities Get Cancer Too
February 4 was World Cancer Day, and among the key issues flagged by the Union for International Cancer Control, which sponsored the event, was “equity in access” to cancer services. This is especially important for the disability community, who is often overlooked in cancer disparity research and campaigns.
With the passage of the Americans with Disabilities Act and other legislation, people with disabilities are increasingly part of the rich and diverse fabric of society and have the right to receive equal access to health care, including cancer screening. However, health care practitioners are often unprepared and unaware of how to provide equitable and high-quality services for this sometimes complex population, whose bodies may require accommodations in equipment or procedures. Instead, health providers and health promotion efforts often focus on issues directly related to a disability rather than on improving health and well-being through prevention strategies and early detection.
This is especially troubling when it comes to cancer screening, the primary means for the early detection and treatment of the disease, with reports showing that a range of barriers contribute to a significant disparity in preventive cancer screening among people with disabilities. These issues contribute to people across disability types being far less likely to receive important preventive screenings, such as pap smears, mammograms, bowel and colorectal cancer screening, and are at a higher risk for delayed diagnosis and cancer mortality, outcomes that have no obvious medical relationship with a person’s disability diagnosis.
In fact, it is more likely that poor health behaviors and inadequate preventable referral recommendations by health care providers are at the root of these inequities in health outcomes. In fact, a recent study found that primary care providers themselves indicated they need additional training and education to improve their comfort in recommending and performing cancer screening for people with physical and intellectual disability.
As an occupational therapist, I understand how vital it is to tailor interventions to the specific needs of the client. An occupational therapy colleague and researcher at the University of Illinois at Chicago, Susan Magasi, is tackling these issues with a campaign driven by her research exploring access to health care for women with disability, the ScreenABLE campaign.
Working in partnership with breast cancer survivors with disabilities, Magasi has created innovative, evidence-informed short films to educate providers as well as community members about physical and attitudinal barriers to cancer screening. “ScreenABLE Saturday,” an annual wellness fair held by Magasi’s team for women with disabilities, provides free access to mammograms, interactive demonstrations and workshops that include physical wellness, nutrition, mental health, health behaviors and access to health professionals. The ScreenABLE campaign galvanized the collective voice from the disability and academic communities to act to reduce the impact of cancer for an often overlooked segment of society and may be a model of other innovative community initiatives.
All people benefit from receiving appropriate support, information and resources aimed at preventive approaches that optimize the potential for successfully managing their health. Ensuring people with disabilities have availability to these services attends to achieving the health equity goals of Article 25 of the Convention on the Rights of Persons with Disabilities that recognizes that people with disabilities have the “right to achieve the highest attainable standard of health without discrimination on the basis of disability.”
To be sure, people with disabilities may have health concerns that at times demand a provider look more specifically at disability-related health interventions. However, this should not come at the expense of following the recommended approaches for cancer screening strategies as these offer the best chance for survival through early detection and treatment. People with disabilities should not be denied access to these potentially lifesaving screenings. Roughly 15 percent of the world’s population lives with some form of disability.
The World Cancer Day’s goal is to reduce the global impact of cancer, and campaigns like ScreenABLE are an example of how to both embrace disability as part of the global community and a method for reducing the burden of cancer for all people, including the more than 1 billion people living with disabilities around the world.