Transforming Care in Lupus Together – POLITICO

Transforming Care in Lupus Together – POLITICO

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An estimated five million people worldwide live with lupus —  a complex and unpredictable autoimmune condition.1,2 For many of those with systemic lupus erythematosus (SLE), the most common type of lupus, there can be a significant impact on their daily life, with many reporting anxiety, chronic fatigue, and painful symptoms.1,3 They often experience recurrent ‘flares’ in symptoms and inadequate disease control, and also have high risk of organ damage due to both disease activity and side-effects of common treatments.3,4

While innovation has accelerated in recent years, there is still a need to involve patients in care more actively and to optimize care beyond symptom management to address the underlying drivers of the disease and achieve clinical remission for more patients. To learn more, Robert Fogel, Vice President of Global Medical Affairs, Respiratory & Immunology at AstraZeneca, spoke to Dr. Marta Mosca, Professor of Rheumatology at the University of Pisa, Italy, and Patrick Wildman, Senior Vice President of Advocacy and Government Relations for the Lupus Foundation of America, about how the community can drive forward changes in care.

Marta Mosca, Professor of Rheumatology at the University of Pisa, Italy

Patrick Wildman, Senior Vice President of Advocacy and Government Relations, Lupus Foundation of America

Robert Fogel: Lupus patients face many difficulties from diagnosis through to treatment. Marta, what challenges do you face from a clinical perspective when treating lupus patients and how could they be addressed?

Prof. Marta Mosca:

The impact of long-term oral corticosteroid (OCS) use is a major clinical challenge. About 80 percent of SLE patients are treated with OCS, and while they help manage symptoms, we know that long-term, high-dose use can increase the risk of irreversible organ damage.4-8 With half of SLE patients developing permanent organ damage within five years of their diagnosis, it’s clear that change is urgently needed.4,9

 In recent years, new data has been published on SLE management and new care options have become available. This led to the European Alliance of Associations for Rheumatology (EULAR) updating its recommendations for SLE management in 2023 to call for earlier diagnosis, OCS-tapering where feasible, and where appropriate for the patient, earlier introduction of more targeted immunosuppressive therapies such as biologics to achieve the targets of low disease activity and remission.10

Balancing patients’ desire for improving everyday quality of life with physicians’ focus on long-term treatment remains an ongoing challenge. With recent innovations in care, we now have more options to help manage lupus more sustainably. Importantly, there is growing evidence that remission, which is the prolonged absence of lupus symptoms and disease activity, is achievable and can — and should — be a key care goal.10,11

The optimal way to achieve this is through a treat-to-target remission strategy, utilizing both pharmacological and non-pharmacological options, in addition to symptom management.10 By purposefully working to achieve remission and re-orient care to address the underlying drivers of disease, we have an opportunity to improve experiences, outcomes and wellbeing for more patients. Studies suggest that the longer a patient is in remission, the better their quality of life, and the lower the rate of subsequent flares and associated organ damage.12

Robert Fogel: Patrick, based on your experience as an advocate for others, what do you feel some of the primary challenges are from a care perspective?

Patrick Wildman:

One of the biggest challenges remains in diagnosis. Delays are common; it can take up to six years from onset of symptoms to receiving a diagnosis.1 During this time, people with lupus often suffer from poor disease control, resulting in unpredictable symptom flares which can seriously impact quality of life.13

In addition, many do not have consistent access to coordinated multidisciplinary care.14 From diagnosis, a range of specialties and physicians should be working together to ensure patient-centered, optimized treatment plans, however — whether due to different care infrastructures, or other barriers such as social determinants of health — this is not consistently available.15 We have the capabilities, but to make this a reality, we need policymakers and healthcare systems to become more responsive to the needs of patients, work to eliminate those barriers to care, and ensure that people living with lupus have access to the full range of care and services needed to improve outcomes and quality of life.

Robert Fogel: Lupus is an area of medicine that hasn’t seen much treatment innovation until recent years. Following recent advances in care and the latest updates to clinical guidelines, what are your hopes for lupus care now?

Prof. Marta Mosca:

The advances in care and clinical guidelines that we’re seeing are encouraging, but there are other changes we as a clinical community can start making to improve outcomes and achieve remission for more patients. For example, it is critical that we further standardize global diagnostic criteria and develop clear clinical referral pathways to ensure a consistent and timely approach to SLE diagnosis and treatment.14

To support earlier diagnosis, we must ensure that primary care physicians receive more exposure and education about lupus.14,16 Access to the right resources is vital to enable the delivery of optimized care plans and if appropriate, referrals to the right specialists and multidisciplinary care teams.

Finally, we need to ensure that patients can contact their clinical teams more regularly to assess treatment plans. Given the nature of the disease, regular touchpoints are essential to understand whether their current plans are delivering the desired outcomes, or whether alternative, perhaps new, treatment options would be better.10,17

Robert Fogel: And Patrick, what’s your perspective on the recent changes to care, and what are your hopes for the future?

Patrick Wildman:

I’m very excited to see the innovation happening in lupus care and treatment, and I’m hopeful that with these changes, remission will become an achievable reality for more people living with lupus.

But to make this possible, much more work needs to be done. This includes additional investment in disease education to reduce the time to diagnosis and to equip people with lupus and their loved ones with the information they need to help actively manage their disease. There also needs to be greater access to the latest treatments and care —  pharmacological and nonpharmacological — to ensure people receive the care they need, when they need it.

Robert Fogel: To close, from a longer-term perspective, how can the community continue advocating for tangible change in lupus care?  

Patrick Wildman:

We need to empower people living with lupus and promote shared decision-making so that patients are partners in their health care, not simply the recipients of that care. That means government and healthcare systems globally need to advance patient-centered care – care that is equitable, care that is accessible and care that responds to the needs and expectations of people living with lupus.  We must continue to work together to ensure that everyone living with lupus knows what high-quality care looks like and has access to the resources and support they need to advocate for it.  

Prof. Marta Mosca:

With further collaboration between patients, patient advocates, policymakers, industry and health care professionals, we can put into practice new clinical guidelines and develop consistent referral pathways to enable optimized, consistent approaches to diagnosis and treatment. Together, we can work to make remission a reality for more people living with this complex disease.

References

  1. Lupus Foundation of America. Lupus facts and statistics. Available at: https://www.lupus.org/resources/lupus-facts-and-statistics [Last accessed: June 2024].
  2. Medscape. Systemic Lupus Erythematosus (SLE). Available at: https://emedicine.medscape.com/article/332244-overview [Last accessed: June 2024].
  3. Olesińska M, et al. Quality of life in systemic lupus erythematosus and its measurement. Reumatologia. 2018; 56 (1): 45-54.    
  4. Bruce IN, et al. Factors associated with damage accrual in patients with systemic lupus erythematosus: results from the systemic lupus international collaborating Clinics (SLICC) inception cohort. Ann Rheum Dis. 2015; 74: 1706-1713.
  5. Mosca M, et al. Withdrawal of therapy in non-renal systemic lupus erythematosus: is this an achievable goal? Clin Exp Rheumatol. 2013; 31 (4 Suppl 78): S71-4. 
  6. Apostolopoulos, D. and Morand, F., It hasn’t gone away: the problem of glucocorticoid use in lupus remains. Rheumatology 2017; 56: 114-122. 
  7. Al Sawah S, et al. Effect of corticosteroid use by dose on the risk of developing organ damage over time in systemic lupus erythematosus-the Hopkins Lupus Cohort. Lupus Sci Med. 2015; 2 (1): e000066.   
  8. Ugarte-Gil MF, et al. Impact of glucocorticoids on the incidence of lupus-related major organ damage: a systematic literature review and meta-regression analysis of longitudinal observational studies. Lupus Sci Med. 2021; 8 (1): e000590.   
  9. Segura BT, et al. Damage accrual and mortality over long-term follow-up in 300 patients with systemic lupus erythematosus in a multi-ethnic British cohort. Rheumatol. 2020; 59 (3): 524-533.  
  10. Fanouriakis A, et al. EULAR recommendations for the management of systemic lupus erythematosus: 2023 update. Ann Rheum Dis. 2024 Jan 2;83(1):15-29.
  11. Lupus Foundation of America. Lupus Remission. Available at: https://www.lupus.org/resources/lupus-remission#:~:text=Generally%2C%20remission%20means%20that%20your,for%20an%20extended%20time%20period [last accessed: June 2024].
  12. Ugarte-Gil MF, et al. Achieving remission or low disease activity is associated with better outcomes in patients with systemic lupus erythematosus: a systematic literature review. Lupus Sci Med. 2021; 8:e000542.
  13. Kandane-Rathnayake R., et al. ‘Not at target’: prevalence and consequences of inadequate disease control in systemic lupus erythematosus—a multinational observational cohort study. Arthritis Res Ther. 2022; 24:70.
  14. Schlencker A, et al. Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study. Lupus Sci Med 2022;9:e000700.
  15. Cornet A. et al. Living with systemic lupus erythematosus in 2020: a European patient survey. Lupus Sci Med. 2021 Apr;8(1):e000469. 
  16. Gergianaki I, Bertsias G. Systemic Lupus Erythematosus in Primary Care: An Update and Practical Messages for the General Practitioner. Front Med (Lausanne) 2018;5:161.
  17. Mok CC. A Consensus for the Management of Systemic Lupus Erythematosus in Asia. Lancet Rheumatol. 2021;3(7):e517-e531.

Veeva ID: Z4-56580
Date of Preparation: June 2024

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