Living with lupus can mean navigating much more than the symptoms of the disease. People may face challenges getting timely care, understanding treatment choices, managing fatigue and mental health, and addressing reproductive health, sexual wellbeing, work and other parts of daily life.
The newest volume of The Arthritis Advocate, Lupus care gaps: Why education, equity and patient advocacy matter, looks at these challenges and why they matter for people living with lupus in Canada.
Drawing on findings from Arthritis Consumer Experts' National Survey on Lupus in Canada and current lupus research and treatment guidelines, the article explores what good lupus care should look like and where gaps remain.
The new Arthritis Advocate also looks at inequities in lupus care. Where someone lives, their income, race or ethnicity, access to healthcare and other social factors can contribute to differences in lupus outcomes.
Most importantly, the article focuses on what can be done. It offers practical ways people living with lupus can become stronger self-advocates while recognizing that patients cannot fix gaps in the healthcare system on their own.
The release of this volume coincides with the launch of ACE's new JointHealth™ Education course: Lupus. Based on findings from ACE's national lupus survey, the six-lesson course provides practical, evidence-informed information to help people understand lupus, navigate diagnosis and treatment, manage everyday challenges and participate more confidently in their care.