Joanne de Bry, Author at ASIF

World AS Day 2024 – Report

Thank you to our members for providing feedback on this year’s World AS Day campaign. Understanding what worked, what could be improved and hearing your ideas for future campaigns is invaluable as we evaluate the campaign’s success and begin thinking about 2025.

We are delighted that the social media grants we awarded raised a significant amount of awareness about axSpA and the work of our members.

Read our Report

World AS Day 2025

World AS Day 2025 will take place on Saturday 3 May. Each year a Sub Committee made up of our members chooses the theme and guides the development of the campaign. If you would like to join the Sub Committee, please contact Jo de Bry (communicationsmanager@asif.info) before 30 September.

ASIF Council Meeting 2024: Update

45 representatives from ASIF Members from 25 different countries will gather in Colombia in October for our biennial in- person Council Meeting.

The programme includes workshops and discussions with our members to help guide ASIF’s work.

Members have the opportunity not only to learn about the latest research in axSpA but also to workshop new programme ideas, share their own work, and discuss how to address organisational challenges. It is an opportunity for ASIF to gather important information about what is happening on the ground across the world to inform how we can better provide support to our member organisations.

Download the full programme.

ASIF Council Meeting 2024 Programme

The programme will include:

The role of patient organisations in improving knowledge about axSpA among healthcare professionals
IMAS (International Map of Axial Spondyloarthritis) and the wider patient-focussed research agenda
Clinical updates from Dr Wilson Bautista (regional) and Dr Raj Sengupta (global)
The provision of psychosocial support by patient organisations
Strengthening relationships between patient organisations and professional rheumatology networks
Opportunities for member organisations to share their own work.

For our members who will attend – please send your poster so that you can participate in the member presentations.

If you wish to attend and have not registered or if you have any questions about the Council Meeting, please contact Jo Davies (office@asif.info) as soon as possible.

The Council Meeting educational programme is sponsored by Novartis, AbbVie and UCB

Reporting on EULAR 2024

Attending EULAR is one of the highlights of ASIF’s year. It is an opportunity to share our work with the international rheumatology and healthcare community, connect with our members and meet with our supporters.

The axSpA patient community played an important role at EULAR, representing the international patient voice in one of the biggest rheumatology meetings in the world. We are proud to share reports on some of the work that ASIF members, trustees and staff presented at EULAR and their experiences of the meeting.

Read EULAR Report

Improving Access for Patients

The introduction of biosimilars – which are almost identical versions of ‘originator’ biologics whose patents have expired – is changing the prescribing landscape in axSpA. It is helping reduce costs to patients and healthcare systems and, if those cost savings are reinvested in axSpA services, can also lead to overall patient care being improved.

In June, Mike Mandelbaum attended a forum in Munich that brought together over 30 patient advocates from around the world to discuss key policy and access issues about biosimilars and generic medicine. Hosted by Sandoz, Making Access Happen provided an opportunity to learn more about generics and biosimilar medicines, exploring issues about product development, supply, pricing, intellectual property topics and their impact on patient access. Mike said afterwards: “This was an interesting and useful meeting, and it was also great to make new connections with patient advocates from every part of the world.”

You can read more about this event and the consensus statement that came out of the meeting at www.sandoz.com/makingaccesshappen.

SpA Congress, Belgium

The annual International Congress on Spondyloarthritides took place in Ghent between 5 and 7 September. This unique event brings together the world’s leading clinicians and researchers, focussing solely on the disease area of spondyloarthritis. The congress is an important yearly event, ensuring that those working to develop better understanding of, and treatments for, spondylarthritis get the opportunity to share their work and hear from other experts in the field.

ASIF was represented at the event by Marco Garrido-Cumbrera, who alongside Denis Poddubnyy and Victoria Narvarro-Compán (IMAS scientific committee), presented six posters from the International Map of Axial Spondyloarthritis (IMAS). IMAS was well represented at the congress with six out of a total of 28 posters in the first poster session.

Two posters were presented on regional differences observed in IMAS; one on the differences in clinical phenotypes and another in patient journey and healthcare utilis.

ation. One poster looked at factors associated with poor mental health and another with factors associated with pain intensity. A fifth poster covered the methodology and main findings of IMAS; and the final poster looked at demographic, disease and geographic elements of the diagnostic delay.

Whilst many sessions at the SpA congress were highly scientific in nature, there were several sessions that are of interest to patients and patient organisations. Felicie Constantino (France) gave a presentation on ‘severe axSpA’ and how the severity of the disease is, or could be, assessed. We were pleased to see that, during the presentation, she used a slide from the European Map of Axial Spondyloarthritis (EMAS) to demonstrate the impact of the disease on working life.

Felicie Constantino presentation, what is severe axSpA?

The congress ‘clinical grand debate’ was about how people respond to treatment and whether the main treatment target should be pain or inflammation. The motion proposed was ‘control of pain is the key outcome in SpA’, which was argued by Kurt de Vlam (Belgium). Opposing the motion was Atul Deodhar (USA), who argued that inflammation is the key outcome measure. He argued that, by focussing on pain, other key outcomes, including inflammation are likely to be overlooked; and that using pain reduction as the key target would be a step backwards in the management of Spondyloarthitis.

Bekhterev Norge

Bekhterev Norge was initially funded as a diagnosis specific part of the Norwegian Rheumatology Association (NRF) in 1986. The aim was to increase the focus and awareness on axSpA within the full set of rheumatic diseases. Bekhterev Norge was established as a separate organisation in 2018. Bekhterev Norge is fully independent from the government in Norway, however, as a recognised patient association we receive public funding to be able to act as the voice of patients with our diagnosis.

Living with axSpA

Suffering from a chronic disease such as axSpA is challenging. Since 1986, we have recognised several areas where we can support our community and have focused on two issues:

1. Local activities for our members

Living with a chronic disease increases the risk of worse physical and mental health. It often also results in reduced physical activity. Many people in our patient group are on disability benefits, meaning they have a lower than average income, and they may miss the social connection that a workplace can provide.

Bekhterev Norge addresses these issues by providing customised social and physical activities for people living with axSpA. Bekhterev Norge has six local associations paying attention to local activities. These are in Tromsø, Trondheim, Kristiansund, Bergen, southern part of the Rogaland County and Oslo. Pool training in a warm water pool is the main local activity. In total we offer 18 local training groups!

Bekhterev Norge understands the importance of community and the power of coming together to support one another. Our local associations are committed to creating a welcoming space where members can share their triumphs, setbacks, and experiences, knowing that they are not alone in their journey. Together, Bekhterev Norge and our dedicated volunteers work tirelessly to support, educate, and empower individuals affected by axSpA, driving positive change and fostering a sense of community among those living with this condition.

2. The need for treatment trips abroad

Norway’s varying climate can be tough for those with axSpA. Since the mid 1980, patients have been offered a four-week treatment trip in the southern part of Europe as a supplementary treatment. The combination of active and passive physical treatments, resting, warm and stable climate and self-care, has proven to have a positive impact. Worryingly, the provision of this supplementary treatment is under pressure. Reasons include pressure on the government budget, the Euro exchange rate, general increase in costs and finally, there is a belief that medicine usage is the only effective therapy for people living with axSpA. Several reports have documented the positive effects of treatment trips abroad, both for individual patients and from a wider societal point of view. Bekhterev Norge advocates to healthcare professionals, bureaucrats and politicians to ensure that the supplementary treatment will not only continue but will improve.

Bekhterev Norge advocates for people living with axSpA to have the access to local activities and treatments.You can read more about Bekhterev Norge’s work at bekhterev.no.

Focusing on Latin America

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America.

We are now increasing our focus on Latin America. This began last November at the EULAR PARE meeting of patient advocates. A few people from outside Europe had been invited, including a representative of the ASOPAN network of 60 Latin American associations that support patients with rheumatic conditions.

Through discussions over the following months, including at April’s PANLAR conference in Colombia, we realised there was a great opportunity to form a partnership between our two organisations. We can learn from ASOPAN about the key issues and challenges across Latin America, and then adapt ASIF’s support to best meet the regional context. This will help ASOPAN’s members integrate axSpA into their activities.

At next month’s Council meeting in Bogotá, our participants from Latin America will start work one day early with an extra meeting looking at the role of patient organisations in helping people with axSpA in Latin America. We will spend the day discussing the challenges facing people with axSpA in the region; gaining practical insights from ASIF’s Latin American members about how they address these challenges and support people with axSpA; and outlining a future programme of activity between our two network organisations.

We hope this will not only be a successful new initiative, but will also be a model we can adapt to other parts of the world. We are very excited about this and look forward to telling you more about it in future.

EULAR 2024

Reflecting on EULAR 2024

For ASIF, the most important part of EULAR is meeting so many people who are passionate about improving the lives of people living with axSpA! Thank you to everyone who visited our booth and found out more about our work.

Having the opportunity to talk to rheumatologists and other healthcare professionals face to face is invaluable. We spent much of our time discussing the IMAS Global Report and the real-life impact of axSpA. The results from the report echoed what many clinicians told us they hear every day: in particular that the delay in diagnosis can have a debilitating impact, and that many of their patients experience poor mental health due to their condition.

Hundreds of rheumatologists took away a copy of the IMAS Global Report. We hope the content and calls to action will help them work in partnership with their patients to improve health outcomes. Furthermore, we hope the reports are shared with colleagues and the information is disseminated through their networks.

Three IMAS posters were presented at EULAR, as well as a publication-only abstract. The posters gave an opportunity to learn more about the factors are associated pain intensity and poorer mental health. The third poster looked at the regional differences for patients on their journey to diagnosis and their use of healthcare systems.

Representatives from many of our member organisations attended EULAR. Meeting these dedicated individuals in person is invaluable. EULAR presents an opportunity to bring our members together for informal conversations and networking, which frequently leads to new ideas and opportunities.

EULAR also provides a rare opportunity to meet with representatives from industry face-to-face, exchanging updates and exploring opportunities for future support and collaboration.

As always, the scientific programme, posters and workshops were outstanding. Hearing about the new developments in axSpA research is exciting, and listening to presentations about improving the care and outcomes of people living with the conditions is hugely positive.

We were also excited to have an ASIF poster presented by Jo Lowe, ASIF’s Project Manager, about our Delay to Diagnosis awareness campaign. The project produced three films and full social media toolkits in nine languages to our members to help them spread the word about the signs and symptoms of axSpA.

Over the coming weeks we will share further reviews of key EULAR sessions that will interest our members.

The evening before EULAR opened, we hosted the Spotlight on IMAS event. The event brought together people living with axSpA, representatives from patient organisations, rheumatologists, researchers, and some of our industry partners. The Wiener Rathauskeller in Vienna proved the perfect venue to welcome attendees from Brazil to Norway, South Africa to Canada, India to Ukraine. Read more about the event.

If you would like more information about our work, supporting a patient organisation in your country, using the IMAS data in your country, or anything else please contact us.

Read IMAS Global Report

Explore the IMAS data in Numbers

Read about Spotlight on IMAS event

Information for people living with axSpA

Information for Patient Organisations

Spotlight on IMAS

Spotlight on IMAS, Vienna, June 2024

DSC 0013Spotlight on IMAS, Vienna, June 2024

Spotlight on IMAS, Vienna, June 2024

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Shining a spotlight on the real-life impact of axSpA

The Spotlight on IMAS event brought together people living with axSpA, representatives from patient organisations, rheumatologists, researchers, and some of our industry partners. On the eve of EULAR 2024, the Wiener Rathauskeller in Vienna proved the perfect venue to welcome attendees from Brazil to Norway, South Africa to Canada, India to Ukraine.

Andri Phoka, ASIF Trustee, welcomed everyone, provided an overview of IMAS and thanked Novartis for transferring ownership of IMAS to ASIF.

Professor Marco Garrido Cumbrera explored the IMAS findings and their real-life impact. Punctuating Marco’s presentation were videos from people around the world who shared the impact that axSpA has had on their lives. Annie from Australia shared how her delay to diagnosis led her not to have children; in Colombia axSpA prevented a young woman from working, leading her to be financially dependent on her father. Tsleng from South Africa described how she lost friends as they didn’t understand what she was experiencing. Andri from Cyprus shared how axSpA is just one of the physical conditions that she faces, alongside Chron’s disease and hypertension and how managing all her physical symptoms is incredibly challenging.

The recently published IMAS report, “The Burden of Axial Spondyloarthritis: a global patient perspective” underlines that axSpA is not simply a physical disease that needs to be treated. It impacts every area of a person’s life and life choices. Therefore, the average seven-year delay to diagnosis must be reduced and healthcare professionals need to consider the impact on an individual, focusing on quality of life and providing multidisciplinary care.

Dr Victoria Navarro Compán, President Elect of ASAS, spoke about her pleasure at seeing the IMAS project develop from the national survey in Spain in 2017 into a European and then a global initiative; the importance of the IMAS findings; and the potential of them to educate healthcare professionals and influence clinical practice.

Mike Mandelbaum, Executive Director of ASIF closed the main presentations by sharing ASIF’s plans for IMAS in the future. He shared that IMAS will be a cornerstone of a new advocacy strategy which ASIF will develop over the coming months.

He commented “Most change happens at local and national levels, so we plan for more of our work to respond to national and regional social and healthcare systems dynamics and priorities. We therefore plan a regional Latin American IMAS report, which will compare individual country data to aggregated regional data in ways which shine a spotlight on where individual countries are performing well or poorly against their closest peers. We believe this can become a powerful advocacy tool.”

Questions and a panel discussion followed the presentations, focusing on how the IMAS Report can be used at a national level.

Over dinner, attendees continued conversations about the impact of axSpA in their countries and how the IMAS Report can be used to leverage change.

Thank you to our presenters and to everyone who attended the event. If you have questions about the event, about IMAS or how you can use the IMAS Report in your country, please contact Jo Lowe.

Read IMAS Global Report

Yoga for AS

Geoff and Jamie from Yoga for AS have produced a short documentary to show how the practices of yoga can benefit for people living with AS/axSpA.

Jamie commented, “We hope you enjoy the documentary, and it gives you a dose of inspiration, empowerment, and a sense of community. We are all in this together. Please share the video with friends, family, your rheumatologist, physiotherapist, GP, and importantly, anyone affected by this condition.”

Through experience of both living with AS and teaching yoga to hundreds of people with AS, Geoff and Jamie have created an online service providing live classes, video tutorials and one to one coaching.

Watch video

Find out more about Yoga for AS