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29-May-2019

‘A Vision for Lupus’ report, published on World Lupus Day, highlights an important need to improve quality of care for lupus patients

To support patients, care givers and healthcare professionals on World Lupus Day, an expert-led report, ‘A Vision for Lupus’, has today been published to help highlight gaps and inconsistencies in care and areas for action to address the gaps that can often exist for patients and their families living with lupus, a chronic, inflammatory, autoimmune disease that affects approximately five million people globally.1,2 GSK conceived, developed and led the ‘A Vision for Lupus’ initiative in collaboration with a Global Multidisciplinary Steering Committee, and the report outlines three specific, patient-centred Calls to Action to the lupus community: 

  1. Raise awareness of lupus amongst the general public, people living with lupus, their families and healthcare providers to support early diagnosis and help people with lupus feel more acknowledged, understood and supported;
  2. Improve access to specialist and multidisciplinary lupus clinics to address the aspects of this complex, multisystem disease;
  3. Raise awareness of ongoing clinical trials to facilitate access to research participation enabling people with lupus to make autonomous decisions in the management of their condition.

 Professor David D’Cruz, Chair of the ‘A Vision for Lupus’ Steering Committee and Consultant Rheumatologist at Guy’s and St Thomas’ Hospital, London, UK said: “There is an important need to address the significant barriers to high-quality care that can still exist for people with lupus. By highlighting Calls to Action, we hope that the ‘A Vision for Lupus’ report will stimulate discussion to drive positive change in three key areas; disease awareness, service delivery and clinical research. We urge people to visit www.visionforlupus.org to access the report so as to understand opportunities for playing a part in improving the quality of life for people with lupus.” 

Duane Peters, Senior Communications Strategist at the Lupus Foundation of America Inc. and Staff Coordinator for the World Lupus Federation said: “I am pleased to support the launch of the ‘A Vision for Lupus’ report on World Lupus Day, an important international platform to generate awareness about the condition. Lupus can be a devastating autoimmune disease disproportionately impacting women in the prime of their lives, compromising everyday plans, social lives and aspirations for a career and family.”

 World Lupus Day was established in 2004 to raise awareness of the disease and its impact on patients, with the aim of improving the quality of life for people affected by this potentially fatal disease. More needs to be done to bring the condition into the public eye; over half (51%) of respondents to a recent global survey were unaware that lupus is a disease, and amongst those who were aware, 41% could not name any complications associated with the condition.3 Public misconceptions about lupus may contribute to a lack of empathy for people with lupus, whose symptoms are often “invisible” to others, leading to them feeling frustrated, inadequately understood, isolated and alone.4

Alain Cornet, General Secretary, Lupus Europe and Steering Committee member said: “The ‘A Vision for Lupus’ report is an important step towards changing the future for people with lupus, so that they have an improved quality of life, feeling acknowledged, understood and supported. We hope that this report will help as many people as possible get access to specialist and multidisciplinary lupus clinics where they can receive quality care for all aspects of this complex multisystem disease, and where they are encouraged and supported to take part in managing their own disease, whether through therapeutic education or participating in clinical research.”

<Local medical spokesperson> said: “GSK is thankful to all members of the Steering Committee who have contributed to the development of the ‘A Vision for Lupus’ report. This report is focused on what needs to be done to ensure people with lupus receive timely and accurate diagnosis, and subsequently, receive appropriate management for their condition, and how we can encourage participation in clinical research. With approximately <number> people affected with lupus in <country>, we hope this report will help raise the global voice of the lupus patient community and drive much-needed change to improve the lives of patients with lupus.”

References

1 Lupus Foundation of America. Facts and Statistics. Available at: https://www.lupus.org/resources/lupus-facts-and- statistics Last accessed: April 2019

2 Lupus Foundation of America. What is lupus? Available at: https:// resources.lupus.org/entry/what-is-lupus. Last accessed April 2019

3 World Lupus Federation, World Lupus Day International Survey (2018)

4 World Lupus Federation, Lupus Knows No Boundaries E-Report. (2017) Available at: http://www.worldlupusday.org/e-report.html Last accessed April 2019

5 National Health Service. Lupus. Available at: https://www.nhs.uk/conditions/lupus/. Last accessed: April 2019

6 Beeson PA. Age and Sex Association of 40 Autoimmune Disease. Am J Med 1994; 96:457-462.

7 NIH National Institute of Arthritis and Musculoskeletal Diseases. Handout on health: systemic lupus erythematosus. Available at: http://www.niams.nih.gov/Health_Info/Lupus/. Last accessed: April 2019

8 McElhone K, Abbott J, Gray J, et al. Patient perspective of systemic lupus erythematosus in relation to health- related quality of life concepts: a qualitative study. Lupus. 2010;19:1640-7

9 Cunha, JS. Et al. “Systemic lupus erythematosus: A review of the clinical approach to diagnosis and update on current targeted therapies.” Rhode Island Medical Journal 99.12 (2016)

10 World Lupus Federation. United Lupus Groups Around the World. Available at: https://worldlupusfederation.org/ Last Accessed: April 2019

11 World Lupus Federation. World Lupus Day: About Lupus. Available at: http://www.worldlupusday.org/about-us.html Last accessed: April 2019

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Last Updated: 29-May-2019