Janice Quirt
HSC Team Lead, Marketing and Communications
Rachel Thompson
National Director of Development
Shelly Redman
CEO for HSC
This Canadian nonprofit is broadening awareness for a debilitating rare disease impacting Canadians, highlighting an immediate need for more accessible care.
It’s the worst disease you’ve never heard of. Huntington Disease (HD) is a rare, fatal genetic neurodegenerative disorder that affects one in every 7,000 Canadians. The debilitating condition appears between the ages of 35 and 55 but can occur as early as childhood and late into adulthood. Symptomatically, Huntington’s disease blends those of ALS, Parkinson’s disease, Alzheimer’s disease and schizophrenia into one, profoundly impacting a patient’s physical, cognitive and emotional abilities. Despite desperate attempts within the research community, not only is there no cure, but in Canada there continue to be significant barriers for patients when navigating the complex multidisciplinary care they require.
Like with many rare conditions, awareness is limited yet critical to moving toward more equitable care pathways. There is no national model for Huntington’s care, meaning the support required to help patients with the disease varies in access and availability within and between provinces.
Barriers to Accessing Multidisciplinary Care
There is no cure for HD, and patients require a large multidisciplinary team to help manage symptoms including neurologists, physiotherapists, speech language, social and genetic counselling as well as occupational therapy and neuropsychiatry. Each patient needs an individualized treatment plan that may include one or all of these professionals. In smaller communities, access to this level of care can be limited or nonexistent, resulting in 25 per cent of patients reporting having to travel over two hours for their appointments.
For more than 50 years, The Huntington Society of Canada (HSC) has been passionately advocating for patients. The organization recently launched the Centres for HD Clinical and Research Excellence (CARE) initiative, a national effort to strengthen multidisciplinary care for Canadian patients with an ultimate goal of improving equity and access to this level of care. Success starts with broader awareness. “When you’re going from ‘I don’t even know what that is’, there’s a lot of ground to cover before we can even begin to advocate for policy change,” explains Janice Quirt, HSC Team Lead, Marketing and Communications.
Building a Canadian Care Framework
From those newly arriving in Canada to indigenous communities, the Centres for HD CARE Initiative aims to represent all HD patients, highlighting the immense need for improved access to multidisciplinary care, particularly for rural regions. “It’s designed to close a gap between those affected and the extremely specialized care they need by providing equitable service to underserviced and underrepresented populations across Canada,” says Shelly Redman, CEO for HSC.
The goal is to provide funding to established clinics that can help meet unmet multidisciplinary needs. The initiative will support clinics by offering funding based on a tiered model. “We want to address gaps and meet a certain standard of care,” says Rachel Thompson, National Director of Development. Larger clinics receiving funding like those in major cities will be required to partner with smaller centres to help support their efforts and build equitable care.
The organization remains optimistic and hopeful as they prepare for more formal implementation. Shelly notes, ‘we have the ideas, the concepts and the dreams. Now it’s about bringing them to life.”
To learn more about the Huntington Society of Canada, Centres for HD CARE Initiative and the next steps made towards implementing this vision visit: https://www.huntingtonsociety.ca.