Are women with lupus being left out of early heart disease prevention?
May is Lupus Awareness Month, and for those living with lupus, it's a moment to draw attention to a long-running gap in their care: the cardiovascular disease risk that often goes unrecognized until it becomes urgent. A large new study presented at the 15th European Lupus Meeting in Lisbon brings that gap into sharper focus. Researchers at Mayo Clinic tracked 1,128 adults—376 with systemic lupus erythematosus (SLE) and 752 matched controls without SLE—for a median of nearly 10 years and found that lupus patients had roughly twice the risk of heart attack and 2.6 times the risk of stroke or transient ischemic attack (TIA) compared to the general population. Patients with lupus nephritis or antiphospholipid antibodies carried the bulk of that excess risk.
The most striking divide was within the lupus population itself. Patients with lupus nephritis carried more than 4 times the risk of any cardiovascular event compared to matched controls, and nearly 3.9 times the risk of dying from a cardiovascular cause. The full SLE group, by comparison, had about 2.5 times the overall cardiovascular event risk. Lupus nephritis patients faced a 3.6-fold higher risk of heart attack and a 3.8-fold higher risk of stroke or TIA.
Eighty-one percent of the study population was women, with a median age of 45—the same demographic routinely missed by traditional cardiovascular risk calculators, which were built around older men with classic risk factors like high cholesterol and smoking. This is the heart of the problem: lupus patients are mostly young women, the standard tools were not designed for them, and the result is that the people facing the greatest cardiovascular risk are the least likely to be flagged for early intervention. The researchers called for screening based on lupus phenotype, with specific focus on whether nephritis or antiphospholipid antibodies are present.
This is a moment for patients and advocates to push for change in how cardiovascular risk is screened in lupus care. If you live with lupus, ask your rheumatologist whether your kidney involvement or antiphospholipid status is being factored into your cardiovascular risk assessment, and request earlier monitoring of blood pressure, cholesterol, and clotting factors if it is not. The more lupus patients raise this in their own appointments, the faster the standard of care can move to reflect what the evidence already shows.
Lupus Awareness Month is also a chance to strengthen the data behind advocacy. Our Diagnosis surveys collect information on lupus subtypes, kidney involvement, and cardiovascular comorbidities. Head to our surveys page and add yours. The larger and more representative our registry becomes, the more weight patient data carries when it's time to push for better screening guidelines, more research funding, and faster access to lupus-specific tools. Share this newsletter with family, friends, and anyone in the lupus community who would want their data counted, too.
