Dr. Sasha Bernatsky, MD, PhD
Rheumatologist and Professor, in partnership with Lupus Canada
Canadians with lupus taking hydroxychloroquine face inequitable access to life-saving eye screening, risking irreversible vision loss and inequity in care.
Systemic lupus erythematosus (SLE, sometimes called just lupus) is a chronic autoimmune disease that can cause organ damage, disability, and significantly impact quality of life. It most often affects young women and is particularly common among who identify as black, first nations Asian, and/or Latino, although SLE can affect anyone. There is no cure for lupus, thus it usually requires lifelong drug therapy.
Hydroxychloroquine (HCQ) is a common treatment that helps control immune system overactivity, and improve lupus disease activity and survival. Tens of thousands of Canadians rely on HCQ for years to manage lupus and other autoimmune conditions.
Risk of long-term eye damage
A serious side effect of long-term HCQ use is damage to the back of the eye (retina) which can cause permanent vision loss if not detected early. Canadian and international guidelines recommend that people starting HCQ have a baseline eye exam within the first year, with a yearly scan using optical coherence tomography (OCT, performed in an eye clinic) beginning no later than five years after starting HCQ. Researchers and doctors agree that OCT is essential for detecting early changes before vision is affected.
Access gaps create inequity
Despite clear recommendations, access to OCT is inconsistent across provinces. Some public health plans do not cover OCT scans, meaning patients rely on private insurance, pay out of pocket…. or simply skip having this essential test done, to the detriment of their health.
For many Canadians living with lupus, who often face disability and financial hardship, annual OCT costs, sometimes over $100, create a barrier to care.
Without regular screening, patients risk delayed detection of HCQ toxicity, which can lead to irreversible vision loss, loss of independence, and high long-term healthcare and economic costs.
A call for action
Coverage of yearly OCT screening for all Canadians on long-term HCQ would align care with evidence-based guidelines, prevent avoidable vision loss, and improve equity. Ensuring that SLE patients have access to essential eye care addresses both medical and ethical concerns, reducing preventable disability and supporting quality of life for those already facing significant health and socioeconomic challenges.
Help make annual OCT screening accessible for every Canadian lupus patient on hydroxychloroquine. Click here, by April 30th, to support Lupus Canada’s appeal.
