Sjögren Europe: shaping a brighter future for people living with Sjögren disease
Written by Geoff Case, RARE Revolution Magazine
Sjögren Europe is tackling the unmet needs for people living with Sjögren disease. Katy Antonopoulou, the president of Sjögren Europe, and Coralie Bouillot, the general secretary, explain its approach.
In June 2019, when Sjögren Europe was established, it brought together 11 national patient associations. Today, it has grown to become an umbrella organisation for 18 national associations, with a board of 5 patient representatives and a medical board of 6 clinicians and researchers.
As Katy explains, the purpose of Sjögren Europe is to increase knowledge and awareness about Sjögren disease, and to work to improve health and care across Europe for patients, who, sadly, face many unmet needs.
Unmet needs in Sjögren disease1
• delays to diagnosis and treatment
• lack of effective and specific treatments (existing treatments are mainly symptomatic)
• difficulties finding a rheumatologist or specialist that understands Sjögren
• lack of knowledge and understanding of the disease
• lack of non-pharmaceutical approaches
• lack of disease self-management programmes
• no specific healthcare pathway
When patients face so many unmet needs, they may feel that nobody is listening. The encouraging message from Sjögren Europe is that this could not be further from the truth.
Coralie believes that the “most significant progress”, since she started volunteering, is the increase in partnership and collaboration. “There has been the most remarkable progress in just a few years. Clinicians are communicating with us, and pharma are putting resources on the table to find new drugs, so there’s real collaboration now.”
Katy describes the organisation’s close collaboration with researchers and scientific institutions. For example, it is collaborating with TREND Community in its social listening research, powered by artificial intelligence, and it is also working closely with hospitals and consortia. A particular focus is on achieving a better understanding of how comorbidities impact people living with Sjögren disease.
Sjögren Europe’s emphasis on collaboration was apparent during its inaugural conference in October 2023, where the latest research was presented to patients, clinicians, researchers and industry experts.
Sjögren Europe has engaged with EULAR, PARE, EURORDIS, EMA, FOREUM and in HARMONICSS, NECESSITY, ERN RECONNET and OMERACT projects.
Having board members widely involved with organisations and projects, as patient advisory group members or patient research partners, is invaluable, Katy says. “Nothing is possible for the patients without the patients. It is very important that patients are part of clinical trials from the very beginning and that we raise the voice of patients around Europe. Doctors need to understand patients’ problems and how they feel about their unmet needs.”
Coralie illustrates Sjögren Europe’s wide-ranging collaboration from her recent experience. She is part of a patient advisory group (PAG) within the European NECESSITY project, which decided to work on defining what “a flare” means for a patient with Sjögren disease.2 This was no mean feat, given the varied and subjective experiences that patients have.
An agreed definition of a flare will enable patients to monitor their condition better as they go about their daily lives and to identify when they are at heightened risk of organ damage. It will also ease communication between patient and doctors so people can get the best possible care. A tool to measure flares could also become a patient-reported outcome (PRO) to help evaluate treatments during clinical trials.
The patient advisory group members defined a “flare” as “the temporary and sudden onset of symptoms that become significantly worse before resolving and, on average, last at least three days”.2
As soon as the scientific evidence is clear, Sjögren Europe shares information with the patient community through leaflets, webinars and awareness campaigns. For example, there is good evidence that non-pharmaceutical approaches help people to manage their disease, so the organisation has been promoting this to the community. “Lifestyle, diet, exercise, pacing one’s activities and reducing stress are critical. Sjögren disease is really sensitive to these things,” Coralie says.
Research into the disease is progressing, Katy says, and it is important to share that message with patients, so that they have hope for the future. However, it is important, she adds, to manage expectations: the path from scientific breakthroughs through clinical trials and approvals to treatments potentially becoming available is long, difficult and unpredictable. “My hope is that the several ongoing clinical trials may result in a systemic treatment for the disease rather than just for the symptoms themselves. That would meet the greatest unmet need for patients.”
Coralie, too, is cautiously optimistic. “I know a systemic treatment is not imminent, but with the collaboration that’s going on today I feel we are now one wheel going in the same direction. And the patient is now at the hub of that wheel. A reasonable hope for the next couple of years is to see patient-centred medicine really becoming established.”
The idea that inspired the creation of Sjögren Europe was to amplify the voices of European national associations, lending them a single, powerful voice that could influence payers, policymakers and healthcare professionals. Through the powerful partnerships it has forged in just a few years, the federation is robustly shaping a brighter future for people living with Sjögren disease.
References
[1] Sjögren Europe Federation [Internet]. 2023 [cited 2023 Dec 6]. Available from: https://www.youtube.com/watch?v=6LylxkAHHJo
[2] C. Bouillot, K. M. Hammitt, A. Hjertviksten Lindland, M. Oosterbaan, M. Pincemin, L. Stone. AB1732-PARE “FLARE, DID YOU SAY FLARE?” FLARES IN SJÖGREN’S DISEASE: THE PATIENT PERSPECTIVE. Ann Rheum Dis. 2023 Jun 1;82(Suppl 1):2103.
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