World Lupus Day: Do we need more awareness?
World Lupus Day (May 10th) is upon us: an annual opportunity “to raise awareness of lupus amongst the public and medical profession.”¹ For those with an interest in autoimmune healthcare – from pharmaceutical research and development to medical communication – it’s a moment to contribute. But it’s also a chance to reflect. Where does lupus management stand today? And what more can be done to improve the lives of those living with the disease?Equally, World Lupus Day should prompt us to question: why does raising awareness matter? The answer isn’t necessarily obvious. I remember being at medical school, attending a psychiatry seminar led by a professor who liked to start with a provocation. “We have all these mental health awareness days,” he said. “That’s great. But people are aware now. What we really need is better provision; better care.” His point was challenging but fair: awareness is only useful if it translates into access and action.Could the same be said of lupus? Are people “aware now”? The answer is: not nearly enough.
Lupus may be recognisable by name to the general public – thanks in part to its recurring role as a diagnostic red herring in House – but it remains widely misunderstood. People with lupus often wait years for a correct diagnosis. Symptoms like fatigue, joint pain, and cognitive fog are easily downplayed or misattributed. The often-invisible nature of the illness means patients might be expected to function as if unaffected.2,3 And while lupus disproportionately affects women and people of colour, there remains – as we have previously written – more to be done to achieve racial diversity in clinical trials.4
So yes, we still need more awareness of lupus – especially how the disease can present and how it impacts people’s lives. But as my psychiatry professor implied, awareness isn’t the end goal. It’s a starting point. And, thankfully, in lupus, we’re seeing a period of scientific progress that has the potential to transform management of the disease. Recent years have brought a deeper understanding of lupus pathophysiology, particularly around the role of B cells; as antibody producers and as regulators of immune signalling, cytokine release, and antigen presentation. B cell hyperactivity and the breakdown of immune tolerance are hallmark features of lupus, contributing to both an enduring inflammatory state and tissue damage.5This understanding has already translated into established therapies, with monoclonal antibodies (mAbs) that target not only B cells but other immune signalling pathways. We’re also seeing early-stage innovation, including bispecific antibodies – engineered molecules that can simultaneously bind two different targets.
Perhaps most radically, CAR T-cell therapy is being explored as a way to ‘reset’ the immune system entirely. Preliminary studies have shown clinical and serological responses in patients with severe, treatment-resistant lupus.7,8 This early promise has raised hopes of a potential to transform long-term disease trajectories, pending further validation.9
There’s also a growing belief that the timing of treatment with advanced therapies is important. Delaying intervention until after irreversible damage has occurred may limit their benefit.10 To use current and future advances most effectively, therefore, we may need earlier recognition, clearer phenotyping, and a more personalised approach to therapy.5,10
This will require better clinical tools – but also better understanding. And that brings us back to awareness: not just among the general public, but among clinicians, payers, and all those shaping autoimmune care.
By Peter Kelly
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