At least five million people worldwide have systemic lupus erythematosus (SLE), one of the most complex autoimmune diseases. It affects patients physically, emotionally, and socially throughout their lives, often daily, and the unpredictability of the disease makes it difficult to diagnose and challenging to treat.[1],[2] Approximately 40 percent of patients develop lupus nephritis (LN), the kidney involvement of SLE.[3] LN is clinically evident in 43 percent of Hispanics, 50.5 percent of African-Americans, and 14 percent of Caucasians, and usually occurs within the first 5 years of SLE diagnosis.[4] Approximately 10-30 percent of patients with LN ultimately develop end-stage kidney disease (ESKD) after 15 years.[3]
GSK is at the forefront of SLE care. We are continuously exploring new treatment options and building on a strong foundation of successful clinical studies to find new ways to help those with lupus. In partnership with patients, advocates and physicians, we are setting long-term goals to help those whose lives are affected by this chronic disease.
Here, Dr. Roger A. Levy, our Global Medical Expert, Immunology & Specialty Medicine, discusses the challenges of lupus and what a “treat-to-target” approach could mean for patients.
Q: What’s the most important thing you’ve learned from working with lupus patients?
Dr. Roger: I have worked with lupus patients more than half of my life, starting in the 1980s when we didn’t know much about the benefits of immunosuppression medication. It was a lot of steroids for the patients. If you went into a waiting room full of lupus patients, most had crutches or wheelchairs, as well as the “moon face” associated with steroids.
I learned that lupus patients live in a world of unpredictability. They don’t know how they’re going to feel in the next week, month or year. They would tell me, “I can’t make any plans. How can I start a new job or go out on a date if I won’t be able to fulfill these expectations?” As physicians, we didn’t really know what was going to happen to them either, so we couldn’t provide reassurance.
Most lupus patients are young females. Many are concerned about whether they can start a family or if contraception will impact their disease. And, of course, there was always the looming question: Will it get worse? So many unanswerable questions understandably made them feel isolated.
Q: What are the challenges that lupus patients face?
Dr. Roger: Many patients don’t share their diagnosis or their daily struggles, even with close family members, let alone school or work mates. It’s hard because some days they feel and look good and some days they don’t. That’s hard for other people to understand.
Adherence to treatment is another issue for some patients. They are often on many medications, and it can be overwhelming and even frightening. Education is crucial for these people, along with information for their friends and family. They should feel comfortable talking with their physician about key questions, concerns and fears. I always advise patients to talk to their provider or ask them to direct them to credible online resources that are available from patient advocacy organisations and professional medical groups.
Q: What does "treat-to-target" mean?
Dr. Roger: “Treat-to-target” is a medical strategy that sets a treatment objective/goal. For SLE, the objective can be either remission – defined as the absence of signs and symptoms of significant inflammatory disease activity – or low disease activity. In lupus, the standard approach is to keep adding or switching medicines until you see a clinical improvement. Then that’s it.
“Treat-to-target” is a more practical, patient-centred approach with a tight control. The goal of treating SLE has always been to help people to the point that they can comfortably lead their lives, and this “treat-to-target” approach is just another example of how we’re delivering on that, to achieve the lowest possible disease activity when remission is not possible, allowing oral steroids to be tapered to < 5mg/d or completely removed.
Q: How can communication gaps between physicians and patients impact treatment?
Dr. Roger: In general, patients are more concerned about the short-term response: “How am I going to be feeling tonight? This weekend?” Physicians are thinking about the longer term: “What’s going to happen in five years? How about the underlying damage?” It’s not that either perspective is right or wrong. Everybody’s right. It is essential that perspectives are shared and expectations are discussed and aligned.
We also need to support patient’s educational needs. Disease awareness and patient empowerment is important. Patients need to be able to identify red flags and symptoms before their disease progresses.
Q: Lupus patients have been benefitting from a “treat-to-target” approach for several years now. How will GSK contribute to this further?
Dr. Roger: ”Treat-to-target” has improved patient care and outcomes in other chronic illnesses, such as rheumatoid arthritis. We hope to achieve the same success with lupus, but first we must agree on a definition of remission and low disease activity, and the best methods to achieve those.
This is challenging because patients experience the disease very differently. Tools such as biomarkers – molecules or proteins that can be measured in the body as an indication of disease or to track disease activity – and disease modifying therapies, crucial to helping people manage their condition, have also both been elusive so far.
GSK is driving the research and therapies needed to make ”treat-to-target” even more effective for patients. Together, we can improve the lives of those with lupus.
Disease modification and prevention of organ damage is key to improving the long-term outcomes of patients with SLE. More articles related to the topic of improving lupus management and the prevention of organ damage can be found below:
References
[1] Olesińska M and Agata Saletra A. Quality of life in systemic lupus erythematosus and its measurement. Reumatologia. 2018; 56(1): 45–54.
[2] NIH National Institute of Arthritis and Musculoskeletal Diseases. Systemic Lupus Erythematosus (Lupus): Diagnosis, Treatment, and Steps to Take. Available at:
https://www.niams.nih.gov/health-topics/lupus/diagnosis-treatment-and-steps-to-take. Accessed March 2022.
[3] Mahajan A, Amelio J, Gairy K, et al. Systemic lupus erythematosus, lupus nephritis and end-stage renal disease: a pragmatic review mapping disease severity and progression. Lupus. 2020;29:1011–1020.
[4] Bastian H, Roseman J, McHwin Jr. G, et al. Systemic lupus erythematosus in three ethnic groups. XII. Risk factors for lupus nephritis after diagnosis. Lupus. 2002;11(3):152-60.
