Despite advances in lupus treatments, there are notable gaps that require attention and improvement in Canada.
Lupus: What Is It and Why Does Canadian Advocacy Matter?
A heterogeneous autoimmune disease, lupus affects thousands of Canadians, meaning its diverse presentation makes it challenging to both diagnose and treat. There is no existing singular and definitive lupus test, and many Canadian patients report significant delays, often waiting months or years, for a diagnosis and then quality management of this complex disease.
Lupus can impact any organ, in any person, at anytime where the immune system attacks healthy cells and tissues in the body leading to a wide spectrum of symptoms – including fatigue, skin rashes, joint pain and swelling, – as well as inflammation in internal organs which can result in kidney failure, blood clots, and strokes. Unfortunately, lupus often results in long term, and irreversible, organ damage.
How lupus is treated is unique to the patient and there is no one size fits all solution. Coupled with the challenge of very few lupus specific treatments available in the Canadian marketplace, and the lack of access to the currently available biologics therapy, patients are often managed long-term by corticosteroids and immunosuppressants leaving them with active lupus overtime and at high risk for serious side-effects and long-term organ damage.
Improved treatment options, disease understanding and ultimately investment in Canadian -led research is at the centre of this Advocacy need; Canadian lupus patients deserve better.
Building Canada’s Lupus Research Capacity
Canada is home to a wealth of talented and motivated researchers however, the lack of dedicated funding for lupus-specific research programs presents a challenge. Many promising scientists and clinicians are drawn to jurisdictions, often beyond our borders, with more robust funding opportunities, compromising Canada’s ability to innovate in lupus care. Currently, most Canadian research funding is awarded to broader immune disease studies, leaving lupus- specific projects underfunded or left behind entirely.
By comparison, since its 2017 inception, the United States DOD (Department of Defense): CDMRP (Congressionally Directed Medical Research Programs) have invested $65M to their Lupus Research Program (LRP) mandated “to support innovative and impactful research that addresses significant issues and gaps in lupus.”
By investing in lupus-specific research initiatives, like our neighbours to the south, Canada can lead in breakthroughs that could improve outcomes for patients both at home and worldwide.
Organizations like Lupus Canada have partnered with specialists and patient partners to educate key decision-makers about the urgent need for commitment from Canadian leaders. Collaborative efforts among policymakers, healthcare providers, and advocacy groups are essential to addressing these gaps and ensuring a brighter future for Canadians living with lupus. Zahi Touma MD, PhD, FACP, FACR, Director Toronto Lupus Program at UHN adds, “Canada has renowned lupus centres and funding opportunities are essential to support the research activities in these centres”
To learn more about lupus advocacy and how you can help, visit lupuscanada.org.
