Supporting the patient voice for people living with Rheumatoid Arthritis

This year, World Arthritis Day (WAD) on 12th October, provides an opportunity for people across industry, healthcare and government to come together with those living with this disease every day. Working together, we can be a louder voice that recognises and raises awareness of the impact arthritis has on people’s ability to live the life they want. The European League Against Rheumatism (EULAR) focus for WAD, ‘Don’t delay. Connect Today’ is deeply relevant, especially in these challenging times of COVID-19. 

Rheumatoid Arthritis in Europe

Rheumatoid Arthritis (RA) is a chronic, progressive inflammatory disease with fatigue, joint inflammation, and deformities leading to reduced physical functioning, work productivity and impaired quality of life.[1] More than 2.3 million people live with rheumatoid arthritis across Europe.[2] While RA can affect anyone at any age, the onset of RA typically begins between 30 and 50 years of age and women are 2 to 3 times more likely to develop RA than men.[3],[4]   

The EULAR campaign theme for WAD is “Time2Work”. This is important because people living with RA who have two or more ‘prognostic factors’ such as a high number of swollen joints and a moderate to high disease activity are associated with worse clinical outcomes and a lowered ability to work.[5] This is an even greater challenge due to the current pandemic and its economic impact across Europe.

Raising the voice of people living with RA

Being in control of important parts of our lives, like having and keeping a job, or maintaining social contacts, can be important factors in living a good quality of life. At Galapagos, our aspiration is to make a positive impact on people’s lives and one way this can happen is to encourage a greater level of shared decision-making when defining a person’s care pathway. EULAR recommendations include the importance of shared decision-making as an overarching principle: “Treatment of patients with RA should aim at the best care and must be based on a shared decision between the patient and the rheumatologist”.6

EULAR recommendations also state that the treatment of RA incurs high individual, medical and societal costs, all of which should be considered by the treating rheumatologist. These costs are not only direct medical costs but include indirect costs like sick leave, work disability or premature retirement.

People living with RA are all different, with unique personal circumstances and their own views of good outcomes. Empowering people to share their preferences and ensuring they have access to the right treatment at the right time, should be a shared goal for all of us involved in delivering treatments.

Partnering with patients to deliver what is important

What’s important to people living with RA is also what’s important to us at Galapagos. Our mission is to understand what is critical for people living with RA and ensuring these priorities are a focus of our long term commitment. 

People are the experts in their own health. We are committed to listening to patients in order to understand their personal challenges and unmet needs – their Patient Important Outcomes (PIOs). This will help us focus our medicine development on the health outcomes that truly matter to patients. We want to better understand how management RA can be addressed in a more personal way to improve patient outcomes and move beyond the traditional measures of ’treatment success’.

It’s our aim to partner with the RA community to better understand their PIOs and we have an ambition to see them implemented, not only in routine clinical practice and RA management, but also in future clinical trials. We are investing in understanding what really matters to people living with RA, including outcomes and treatment preferences, so that we can aim to support them living their lives to the full. In order to do this, we are bringing together a group of RA patients from across Europe to gather insights and advice to further develop and inform future activities that support PIO development.

Together with our partner Gilead we have a shared vision of transforming the treatment of inflammatory disease. Gilead’s heritage of transformational medicine and Galapagos’ pioneering research capabilities in targeted therapies mean that together, we can move faster and do more for the people we serve.

We recognise the heritage of work that the patient community has developed so far, and we’re excited to be on this journey together.

Alice Dietrich, Global Head of Medical Affairs, Galapagos

[1] Taylor PC, et al. Rheumatol Int 2016; 36:685–695. 2. Michaud K, et al. Ann Rheum Dis 2016; 75:1797–1805.

[2] National Rheumatoid Arthritis Society. The Burden of Rheumatoid Arthritis across Europe a Socioeconomic Survey (BRASS). Summary Report. Available at:  Accessed September 2020

[3] Wasserman, A. Diagnosis and Management of Rheumatoid Arthritis. American Family Physician. 2011;84(11):1245-1252.

[4] Arthritis Foundation. Arthritis by the Numbers. Available at:  Accessed September 2020.

[5] Alemao E, et al. J Rheumatol 2018; 45:1353–1360.