GSK conceived, developed and led the ‘A Vision for Lupus’ initiative in collaboration with a Global Multidisciplinary Steering Committee who received a fee for their services.

Raising the global voice of people living with lupus to help improve their care

The vision

The ‘A Vision for Lupus’ initiative aims to highlight current gaps and inconsistencies in lupus care and a vision for improving the future for the estimated five million people1 living with this chronic, inflammatory autoimmune disease.

In March 2018, GSK convened a Global Multidisciplinary Steering Committee comprising a person with lupus, a patient advocacy expert, representation from international lupus patient organisations and clinicians specialising in the condition to discuss how to tackle these barriers and propose patient-centred calls to action to change the future of lupus care.

Although progress has been made in the management of lupus in recent years, the Global Multidisciplinary Steering Committee identified that at a global level, the following challenges still exist:

  • Lack of awareness of the condition amongst general public and healthcare professionals which may lead to people with lupus feeling misunderstood, isolated and alone
  • Limited access to specialist and multidisciplinary clinics which provide the high-quality care for people with lupus
  • Limited awareness of and barriers to participation in clinical research to further the development of new and effective treatments for people with lupus

The ‘A Vision for Lupus’ report highlights three important calls to action to address these challenges:

  1. Awareness
    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. Service delivery
    Improve access to specialist and multidisciplinary lupus clinics to ensure people with lupus are receiving the best quality care possible that addresses many aspects of this complex disease;
  3. Clinical research
    Raise awareness of ongoing clinical trials to facilitate access to research participation and involve patients in the study design of lupus clinical trials, to ensure they address the aspects of the disease which matter most to patients.

‘A Vision for Lupus’
report

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‘A Vision for Lupus’
media materials

Press release:
‘A Vision for Lupus’ report, launched on World Lupus Day, highlights an important need to improve quality of care for people living with lupus

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‘A Vision for Lupus’ infographic:
provides a visual depiction of general information about lupus and the ‘A Vision for Lupus’ initiative and report which includes a summary of gaps and inconsistencies in care along with key calls to action

Download

What is lupus?

Systemic Lupus Erythematosus (SLE), or lupus, is a chronic, inflammatory autoimmune disease which affects approximately five million people globally.1,2 In people with SLE, the body produces antibodies that attack its own healthy cells and tissues in addition to producing antibodies to protect against infection.1,3

Over time, lupus can affect many different organs or tissues of the body. Symptoms can vary greatly; some of the most common symptoms of lupus are painful or swollen joints (arthritis), extreme fatigue, skin rashes, anaemia and kidney problems.2

70–90%
It is estimated that 70-90% of lupus cases are in females4 with the highest incidence during a woman’s most productive childbearing and professional development years.4

Meet the Steering Committee

Prof. David D’Cruz
Consultant Rheumatologist,
Guy’s and St Thomas’ Hospital, UK

An overview of the ‘A Vision for Lupus’ report from the Steering Committee Chair

Dr. Patricia Cagnoli
Rheumatologist, University of Michigan, US

Improving access to clinical trials so patients can make autonomous decisions in the management of their condition

Duane Peters
Senior Communications Strategist,
The Lupus Foundation of America Inc. and Staff Coordinator for the World Lupus Federation

Tools to assess the patient burden of lupus including the LFA-REAL™ (Rapid Evaluation of Activity in Lupus) system

Alain Cornet
General Secretary, Lupus Europe

The need to improve awareness of lupus amongst the general public, patients and primary care doctors in Europe and beyond

Neil Betteridge
Patient Engagement Expert

The importance of collaborating with patients and patient organisations to improve quality of care for people with lupus

Dr. Chiara Tani
Rheumatologist, University of Pisa, Italy

Video to follow

Multidisciplinary care and ongoing education and training at the Lupus Clinic in Pisa

References

  1. Lupus Foundation of America. What is lupus? Available at: https://resources.lupus.org/entry/what-is-lupus. Last accessed: April 2019.
  2. National Health Service. Lupus. Available at: https://www.nhs.uk/conditions/lupus/. Last accessed: April 2019.
  3. 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
  4. Beeson PA. Age and Sex Association of 40 Autoimmune Disease. Am J Med 1994; 96:457-462

GSK conceived, developed and led this initiative with the input of a Global Multidisciplinary Steering Committee who received a fee for their services.

Job code: NP-GBL-LPU-WCNT-190001
Date of prep: April 2019

A GSK initiative

© 2018 GSK group of companies. All rights reserved.

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