The Issue
Diabetes and sight loss are closely connected, with diabetic retinopathy being a common related condition for people living with diabetes. Over the last few years, CNIB has heard from Canadians living with diabetes and sight loss who are having difficulties managing their diabetes because their insulin pump is not accessible. End users are unable to independently or safely use their insulin pump because often the device must be navigated solely using visual features on a display screen.
This is unacceptable given that diabetic retinopathy is the fourth leading cause of sight loss in Canada and the leading cause of blindness in adults in the United States. As far as we are aware, there are no accessible insulin pumps on the Canadian or international markets. There are currently 750,000 people alone living with diabetic retinopathy in Canada, not taking into account the number of people living with other sight conditions and diabetes.
In partnership with Diabetes Canada, CNIB is working with manufacturers, regulators, researchers, community members with lived experience and healthcare professionals to collaborate on solutions to this issue.
For more information, please take a look at our Accessible Insulin Pumps Briefing Note.
Petition e-4177
With diabetic retinopathy being the leading cause of sight loss in working-age adults, CNIB supported Petition e-4177 that called on the federal government to ensure Health Canada’s approval process for new medical devices includes an accessibility assessment; and work with insulin pump manufacturers to address the safety concerns with existing insulin pumps. Initiated by Ryan Hooey from Tecumseh, Ontario, the petition received 2,775 signatures and was formally presented by MP Bonita Zarrillo (Port Moody—Coquitlam, British Columbia) to the House of Commons on March 6, 2023.
While the Minister of Health tabled the response to Petition e-4177 on April 19, CNIB finds it inadequate as it continues to place the responsibility on the manufacturer to ensure medical devices, such as insulin pumps, are accessible. Health regulators such as Health Canada have a role to play in guaranteeing that devices coming into the market are accessible, usable and safe. For far too long, regulators have also accepted warnings provided by manufacturers that insulin pumps are “not safe for use by people who are blind” which further perpetuates inequity in healthcare access. Continue reading our official response.
Research
In 2020, CNIB launched an international survey to better understand the experiences of people living with sight loss and diabetes when managing their insulin. The research found that insulin pumps currently offered on the international market are not accessible for those who are blind or partially sighted. The majority of pump users require the assistance of other individuals to properly and safely use their device.
The survey also identified many accessibility problems with current pumps; such as lack of haptic feedback (i.e. vibrations), lack of tactile feedback (i.e. buttons designed for accessibility), and lack of sufficient audio feedback and visual feedback.
Read the full research paper published in the Journal of Blindness Innovation and Research.
As a follow up to this initial research, we commissioned a further study to conduct end user research in order provide a list of recommendations on how to make insulin pumps fully accessible. To read the full report and executive summaries, please click on the links below.
Hybrid Closed-Loop Systems (HCLs)
As the diabetes device industry looks ahead to the future of diabetes management, we are also exploring the possibilities of hybrid closed-loop systems (where a person's insulin pump and continual glucose monitor automatically communicate with each other to regulate glucose levels). While this type of system is not currently approved by Health Canada, we are interested in its potential to make diabetes management more accessible for people who are blind or partially sighted. For more information, please read our recent feedback report on HCLs.
Testimonials
We are always looking to hear from community members living with diabetes and sight loss to share their stories and inform our advocacy campaign. We are especially interested in talking to people from diverse ethnocultural backgrounds who are predisposed to diabetes to ensure that our campaign includes the perspectives of all experiences of diabetes. If you are interested in supporting the campaign or getting involved, please email advocacy@cnib.ca
Marie-Catherine's story (Quebec)
Anne's story (Quebec)
Accessible Insulin Pumps – November 2021 Advocacy Campaign
Thank you to everyone who joined us for Diabetes Awareness Month 2021 in our advocacy campaign for accessible insulin pumps. Approximately 400 people took action and wrote to their MP, asking them to call upon contact Minister Duclos and Associate Minister Bennett and request that Health Canada adapt its processes for approving medical devices, to ensure insulin pumps entering the market are fully accessible. Over 188 MPs were contacted and heard from their constituents that Canada needs insulin pumps that everyone can use safely and independently.
We are really encouraged by the positive responses people forwarded from their MPs who had written to the Ministers and held follow up meeting with both Health Canada and the Minister of Health’s office. We will continue this conversation to ensure that future devices are fully accessible to all Canadians.
If you didn’t get the chance to take this action or to keep informed about our progress, please subscribe to our advocacy e-newsletter.
