‘A Vision for Lupus’ Report, Published Ahead of World Lupus Day, Highlights an Important Need to Improve Quality of Care for Lupus Patients
May 9, 2019LONDON–(BUSINESS WIRE)–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.”
Ravi Rao, Immunology and Specialty Medical Head, GSK said: “GSK is
extremely grateful to all members of the Steering Committee who have
contributed to the development of the ‘A Vision for Lupus’ report. The
report highlights the need for improvement in diagnosis, better
multi-disciplinary management and the importance of clinical research in
lupus. As part of GSK’s commitment to help the 5 million people affected
with lupus worldwide, we will continue to play our part to address these
calls to action. We hope this report will help raise the global voice of
the lupus patient community and drive a much-needed change to improve
the lives of patients living with lupus.”
Notes to editors
About Systemic Lupus Erythematosus (SLE)
Systemic Lupus Erythematosus (SLE), also known as lupus, is a chronic,
inflammatory, autoimmune disease affecting 5 million people worldwide
with 70%-90% of these cases appearing in females.2,5,6 The
body produces antibodies that attack its own healthy cells and tissues
in addition to producing antibodies to protect against infection.2,7
Lupus can affect many different parts of the body, including the joints,
skin, kidneys, heart, lungs, brain and blood vessels.
The most common symptoms include painful and swollen joints, extreme
fatigue, skin rashes, anaemia, and kidney problems. Typically,
people with lupus have periods of illness, called flares, and periods of
relative wellness, called remission.8 Severity of the illness
can vary; some people with lupus can continue to live a normal life,
while others experience frequent, life-threatening flares that require
critical care.8 As there is no cure for lupus,5
the goals of treatment are to achieve and maintain disease remission,
prevent flares and prevent damage to the body’s organs and tissues.9
About ‘A Vision for Lupus’
In 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 the future ‘A
Vision for Lupus’. The two advocacy groups that form part of the
Steering Committee are the Lupus Foundation of America and Lupus Europe,
both of whom are members of the World Lupus Federation, a global
coalition of patient groups which coordinate efforts on World Lupus Day.
Both the World Lupus Federation and Lupus Europe have received grants
from GSK.
The Chair of the ‘A Vision for Lupus’ Steering Committee is
Professor David D’Cruz, Consultant Rheumatologist at Guy’s and St
Thomas’ Hospital, London, UK. Other members include Dr. Chiara Tani,
Rheumatologist, University of Pisa, Italy; Dr. Patricia Cagnoli,
Rheumatologist, University of Michigan, USA; Duane Peters, Senior
Communications Strategist at the Lupus Foundation of America Inc. and
Staff Coordinator for the World Lupus Federation; Alain Cornet, General
Secretary, Lupus Europe; and Neil Betteridge, Patient Engagement Expert.
A person living with lupus, who wished to remain anonymous, contributed
to early discussions on the report.
About the World Lupus Federation
The World Lupus Federation is a coalition of lupus patient organisations
from around the world. They are united with the mission to improve the
quality of life for all people living with lupus. The World Lupus
Federation coordinates awareness, education and advocacy initiatives
with support from its global affiliates.10
About World Lupus Day
World Lupus Day is held annually on 10 May. This year will be the 16th
annual observance of World Lupus Day, a global call-to-action on behalf
of the millions of people around the world who are affected by lupus.
The day serves as an opportunity to rally stakeholders around the world
for the common purpose of drawing attention to and directing resources
to end the suffering caused by this disabling and potentially fatal
disease.11
GSK – one of the world’s leading research-based pharmaceutical
and healthcare companies – is committed to improving the quality of
human life by enabling people to do more, feel better and live longer.
For further information please visit www.gsk.com.
Cautionary statement regarding forward-looking statements
GSK cautions investors that any forward-looking statements or
projections made by GSK, including those made in this announcement, are
subject to risks and uncertainties that may cause actual results to
differ materially from those projected. Such factors include, but are
not limited to, those described under Item 3.D ‘Principal risks and
uncertainties’ in the company’s Annual Report on Form 20-F for 2017
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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