setting the future care principles for people living with Systemic Lupus

The case for change: the debilitating burden of lupus¹

We understand more about the burden of lupus than ever before, with many projects underway across the world looking to define the barriers faced by people living with lupus. A complex, chronic autoimmune disease, lupus causes the immune system to attack heathy tissue and affects an estimated 5 million people worldwide.² Most people living with lupus have systemic lupus erythematosus (SLE), and experience systemic inflammation of multiple organs,^3,4 which can cause many health problems including joint pain, skin rashes or lesions and debilitating fatigue.^4-7

Most people living with SLE experience periods of worsening symptoms, known as flares, which are associated with increased risk of long-term damage to organs.⁸ Every flare a patient experiences regardless of severity, leads to increased risk of organ damage.⁹ In particular for those with moderate to severe disease, this significantly impacts use of health care services, leading to increased emergency hospital visits and health care costs.¹⁰ Up to 80 percent of people living with lupus are exposed to corticosteroids within five years of treatment, and will also use a median of five different medications to manage their symptoms. Corticosteroids can provide rapid symptom relief.¹¹ However, long-term use of corticosteroids used in high doses, has been associated with irreversible organ damage, poor quality of life and other side effects.^12,13 Despite this, there have been few new treatments over the past 60 years and patients are in urgent need of access to all available options.¹⁴

Lupus Europe’s 2020 Living with Lupus survey revealed the huge impact that SLE symptoms have on quality of life. Approximately half of respondents felt SLE had impacted their studies or employment status, as well as their ability to perform normal daily activities, with 58 percent of people reporting that lupus has an impact on their career.¹⁵

Building consensus

Because of the work of the patient advocacy and clinician community, including the Lupus Foundation of America’s ALPHA Project, the World Lupus Federation and Lupus Europe and others, we know that the challenges facing people living with SLE extend across a patient’s lifetime. People with lupus can wait an average of three-and-a-half years from the time they notice symptoms until they receive a formal diagnosis.¹⁶ Lupus can be challenging to diagnose because many of its main symptoms can be mistaken for symptoms of other diseases, making it difficult and time-consuming for patients to access the care they need.^17-19

In the last decade, our understanding of the science and care of lupus has improved dramatically. As a result, new guidelines for how patients can be managed and treated have been developed, through the British Society of Rheumatology guideline (2017)²⁰ and the European League Against Rheumatism (2019).²¹ However, due to the complex nature of lupus, there is variation in clinical practices and therefore in the care and treatment from patient to patient, around the world.²²

Despite differences in care worldwide, the core challenges facing people…