National Volunteer Week: Benjamin Ritsma

I am a physician in Physical Medicine and Rehabilitation (Physiatry), a specialty that aims to help people function better as they deal with a neurological or musculoskeletal condition. My career path was influenced by my own family’s experience with ALS. As a Physiatrist at the ALS clinic, I work with a multidisciplinary team to help manage patients’ symptoms – for example, muscle tightness, pain, cramps, mood changes, swallowing problems and mobility issues. It is work I am passionate about.

My volunteer role with ALS Canada focuses on advocating in support of genetic fairness – an issue some ALS patients I have worked with express concerns about. These patients note hesitation about undergoing or sharing results of genetic testing with all of their care providers, their workplace, or family members as they are worried about the potential impact this could have on themselves or their family when applying for insurance or seeking employment. Learning that there was no protective legislation in place, I was troubled by the thought that genetic discrimination, or the fear of it, could create a barrier for people living with ALS, in terms of their clinical care or research involvement.

We want patients to feel comfortable fully engaging in clinical and research efforts without fear of repercussions, so that we can further discoveries and develop new therapies. Moreover, patients and families dealing with the daily challenges of ALS should not have to take on the burden of lobbying for their rights on this issue.

With this in mind, I started working alongside the Canadian Coalition for Genetic Fairness (CCGF), which is a coalition of organizations dedicated to preventing genetic discrimination for all Canadians. In 2015, I connected with ALS Canada and became the organization’s representative on this issue and became a member of ALS Canada’s National Advocacy Committee.

Advocacy work at a governmental level is not part of my typical day job, and it’s not something I had experience with prior to this involvement. It presents many unique challenges we don’t think about in our regular clinical practice. There are so many factors you can’t control in this role and change at this level takes time – usually years, not months – with delays and setbacks an inevitable part of the process. My commitment to this issue and my knowledge of its importance in the clinical context was an excellent start, and by working with the CCGF and ALS Canada’s National Advocacy Committee I’ve gained an understanding of the approaches that help to influence change.

The experience has been educational and also tremendously rewarding. Bill S-201 (the Genetic Non-Discrimination Act) has received approval in Parliament and the Senate, and is now awaiting royal assent to be made into law. For the entire ALS community that is a victory worth celebrating.

Each day during National Volunteer Week, we are posting the story of a different ALS Canada volunteer here on our blog. Each person profiled has different reasons for volunteering, skills they bring to the table, and tasks they are responsible for, but – like all our volunteers — what they share in common is a passion for helping to make ALS a treatable, not terminal disease.

Posted in: Stories, Volunteers