The Arthritis Advocate, Volume 4
Lupus care gaps: Why education, equity and patient advocacy matter
Kelly Lendvoy, VP, Communications and Public Affairs, Arthritis Consumer Experts
Living with lupus can mean living with uncertainty.
Symptoms can come and go. They may affect different parts of the body at different times. Fatigue, pain, joint symptoms and brain fog may be difficult for other people to see or understand. Lupus can also affect major organs, including the kidneys, heart, lungs and nervous system.
There are several forms of lupus, but the most common and serious form is systemic lupus erythematosus (SLE). When people use the term “lupus,” they are usually referring to SLE. SLE affects about 1 in 2,000 Canadians and is much more common in women, affecting about 1 in 1,000 women. It also affects Black, Indigenous and other racialized people more often than white people.1
Navigating healthcare can add another layer of difficulty.
Findings from Arthritis Consumer Experts’ National Survey on Lupus in Canada point to challenges with diagnosis, access to care, treatment, mental health, reproductive health, work and other parts of daily life.2
These findings helped shape ACE’s new JointHealth™ Education – Lupus course.3 The course provides practical, evidence-informed information to help people better understand lupus, prepare for healthcare appointments and take an active role in decisions about their care.
But patients need more than information. They also need timely access to high-quality care. Where someone lives, their income, race or ethnicity, access to specialists, and experiences within the healthcare system can all affect their lupus journey.
Closing gaps in lupus care requires both patient education and advocacy for better, fairer care.
What should good lupus care look like?
The American College of Rheumatology’s new guideline for systemic lupus erythematosus provides an important starting point.4
Treatment aims to achieve remission or low disease activity, when possible, prevent organ damage, and limit long-term exposure to corticosteroids.
Good lupus care may involve regular blood and urine tests, access to a rheumatologist and other specialists, monitoring for changes in disease activity, and treatment based on disease severity and the organs involved.
Communication is also part of good care.
The guideline also emphasizes shared decision-making between patients and health care providers. Patients need to understand why tests are being ordered, what their medications are intended to do, what symptoms they should watch for and when they should contact their healthcare team. They also need opportunities to ask questions and talk about what matters to them.
The ACR guideline recognizes an important challenge: recommended care may be difficult to put into practice when patients cannot access the necessary tests, specialists, procedures or medications.
A recommendation for good care can only help if a patient has a fair opportunity to receive that care.
Lupus affects more than disease activity
Blood tests, physical examinations and other clinical measures provide important information about lupus. They do not tell the whole story.
Research conducted to inform the ACR lupus guideline found that patients identified medication side effects, daily function, treatment goals, monitoring, communication, costs and public or private drug plan coverage among their priorities. Researchers also found that the lived experience of lupus extends beyond standard measures of disease activity to include physical, emotional and social challenges.5
ACE heard similar concerns from Canadians living with lupus.
When asked about barriers to accessing care in ACE’s National Survey on Lupus in Canada, respondents cited long wait times (31%), travel distance (22%), cost (21%), and lack of specialists (20%).
Mental and sexual health challenges were pervasive – 80% of respondents reported anxiety, depression or insomnia. Twenty-four per cent had not received reproductive health guidance. Only 21% reported that lupus had no impact on their sexual wellbeing.
These findings show why lupus care needs to look beyond controlling inflammation.
A person may be managing severe fatigue while trying to stay at work. Someone may have questions about whether a medication is safe during pregnancy or breastfeeding. Another person may be experiencing anxiety or changes in sexual wellbeing while using most of a short medical appointment to discuss test results and medications.
What patients experience between appointments can help their healthcare team understand how lupus is affecting their lives and whether their care needs to change.
Treatment is improving, but gaps remain
There has been important progress in lupus treatment. Newer targeted therapies have expanded treatment options, and new ways of receiving treatment continue to emerge. In April 2026, for example, Health Canada approved a subcutaneous form of anifrolumab that can be self-administered with an autoinjector, providing another treatment delivery option for some adults living with SLE.
Progress in treatment matters. But medication is only one part of good lupus care.
Patients also need timely diagnosis, regular monitoring, access to specialist care, reliable information and the opportunity to participate in decisions about their treatment.
The same disease, different opportunities for care
Lupus does not affect every population equally. People also do not have equal opportunities to receive the care they need.
Research has found differences in lupus severity and health outcomes among racialized populations. Race and ethnicity, income, education, access to healthcare and other social factors can all contribute to differences in lupus outcomes.6
Consider what these barriers can mean in everyday life.
Someone living in a rural or remote community may have to travel a considerable distance to see a rheumatologist. A person who cannot easily take time away from work may have difficulty attending appointments or completing regular tests. Indigenous, Black and other racialized patients may face additional challenges related to culturally safe care, trust and previous experiences within the healthcare system.
Where you live, your income, your race or ethnicity, or other social factors should not determine whether you can get the lupus care you need.
Why patient education matters
Lupus asks patients to learn a great deal.
They may need to understand laboratory tests, recognize possible flares, track symptoms and learn about several medications. They may need to discuss pregnancy planning, mental health or sexual wellbeing, ask for changes at work, or coordinate care among several health care providers.
Doing all of this is harder without reliable information that is easy to understand.
Research on gaps in lupus care has identified patient education and shared decision-making as important ways to improve care and help address unequal lupus health outcomes.7
Education does not remove the barriers patients face. But it can help someone understand why regular monitoring matters, recognize an important change in symptoms, prepare questions for an appointment and participate more confidently in treatment decisions.
From ACE’s lupus survey to practical education
ACE developed its new JointHealth™ Education – Lupus course based on findings from the National Survey on Lupus in Canada.
The six-lesson course follows the patient journey, from understanding lupus, diagnosis and monitoring, through treatment and shared decision-making. It also addresses the challenges of everyday life, including fatigue, mental health, physical activity, reproductive health, hormonal changes, sexual wellbeing, relationships and employment. The final lesson focuses on access to care, reliable health information and self-advocacy.
The goal is not to turn patients into medical experts. It is to give them practical information and tools they can use in their own care.
What can you do as a patient?
Self-advocacy can begin with small, practical steps:
- Keep track of important changes in your symptoms.
- Write down your two or three biggest concerns before an appointment.
- Ask why a test is being ordered and what the results mean for your care.
- When a treatment is recommended, ask about its benefits, risks and other options.
- Ask what symptoms may signal a flare and when you should seek care.
- Raise issues that matter to your life, including fatigue, mental health, pregnancy, sexual health and work.
Being an active self-advocate does not mean managing lupus on your own. Shared decision-making brings together the health care provider’s medical knowledge with the patient’s knowledge of their body, life, needs and priorities.
Patients cannot close healthcare gaps on their own
There is a limit to what self-advocacy can accomplish.
Preparing for an appointment cannot shorten a specialist wait list. Learning about lupus cannot eliminate a long journey from a remote community to a rheumatology clinic. Asking questions cannot ensure that every patient receives care that respects their culture, experiences and needs.
Those problems require changes in the healthcare system.
Canadian lupus experts and patient advocates have called for greater attention to disparities in lupus outcomes, including those experienced by Black, Indigenous and other racialized people.
Better lupus care means timely diagnosis and access to rheumatology care. It means appropriate monitoring and evidence-based treatment. It means improving care for people living in rural and remote communities and providing culturally safe care. It also means recognizing that mental health, reproductive health, sexual wellbeing and employment are part of living with lupus and deserve attention.
Most importantly, people living with lupus need a meaningful voice in decisions about their own care and in the policies that shape lupus care in Canada.
From education to advocacy
People living with lupus should not have to become experts at navigating the healthcare system simply to receive the care they need.
ACE’s National Survey on Lupus in Canada helped identify challenges patients experience in their care and daily lives. Our new JointHealth™ Education – Lupus course turns what we learned into practical education that patients can use.
Education can help people understand lupus, ask questions and take an active role in their care. Advocacy is needed to ensure the healthcare system responds to the gaps and inequities patients continue to experience.
People living with lupus need both: the knowledge and confidence to participate in their care, and a healthcare system that gives everyone a fair opportunity to receive the care they need.
References
- Keeling S, et al. “A Thousand Faces of Inequity.” Canadian Rheumatology Association Journal (CRAJ). 2024.
- Arthritis Consumer Experts, National Survey on Lupus in Canada, 2025.
- Arthritis Consumer Experts, JointHealth™ Education – Lupus, September 2026.
- Sammaritano LR, et al. 2025 American College of Rheumatology (ACR) Guideline for the Treatment of Systemic Lupus Erythematosus. Arthritis Care & Research. 2026;78(7):815-839. doi:10.1002/acr.25690.
- Ogdie A, et al. Patient Perspectives and Priorities for the Development of the 2025 American College of Rheumatology Guideline for the Treatment of Systemic Lupus Erythematosus. Arthritis Care & Research. 2026.
- Williams JN, Drenkard C, Lim SS. The impact of social determinants of health on the presentation, management and outcomes of systemic lupus erythematosus. Rheumatology (Oxford). 2023;62(Suppl 1):i10-i14.
- Mendelson C, et al. Challenges of Perceived Self-Management in Lupus. Arthritis Care & Research. 2022;74(5):785-794. doi:10.1002/acr.24530.