axial spondyloarthritis Archives

ASAS Annual Meeting

Pictured: Jo Davies, Victoria Navarro Compán, Xenodib Baraliakos and Jo Lowe at ASAS Meeting

Jo Davies and Jo Lowe were delighted to attend the ASAS annual meeting in January. This year’s event marked 30 years of ASAS and was held in Maastricht, in the Netherlands where the organisation was founded in 1995. It was a fitting way to commemorate the success and achievements of ASAS over the last three decades.

During the meeting, Désirée van der Heijde gave a keynote speech describing how and why ASAS was founded and reflected on the main contributions to the spondyloarthritis field over the years. During the gala dinner, a birthday cake was presented and awards given to the members of the first Executive Committee. The ASAS founders, Sjef van der Linden, Désirée van der Heijde, Maxime Dougados, Asim Khan, Andrei Calin and Nick Bellamy were celebrated for their achievements.

In recent years, the collaboration between ASAS and ASIF has developed significantly and ASIF now has a place on the working groups of two key ASAS projects. Discussing these projects in person and hearing them presented to the wider ASAS membership was a fantastic opportunity. It helps us to understand the engagement and enthusiasm of ASAS members’ contributions and puts into context the rigour with which the organisation’s guidelines and endorsements are developed.

There were also some changes in personnel with Raj Sengupta from The Royal National Hospital for Rheumatic Diseases in Bath (UK) being elected to the Executive Committee; two new leaders of Young ASAS (Clementina Lopez Medina and Murat Torgutalp) and a handover in ASAS leadership from Xenofon Baraliakos to Victoria Navarro Compán.

During the final session of the meeting, this handover was an opportunity for Xenofon to thank the members of ASAS and reflect on his five years leading the organisation. Victoria discussed the future of ASAS and what the next five years under her leadership might look like; she also had some wonderful words of admiration for Xenofon and used the occasion to present him with gifts to celebrate his tenure.

APMARR

Associazione Nazionale Persone con Malattie Reumatologiche e Rare (APMARR), celebrated its 40th anniversary last year. APMARR’s mission is “to improve the quality of assistance and to improve the quality of life” offering help and information to people with rheumatic and rare diseases through volunteering, psychological support, awareness campaigns. APMARR runs national and local activities throughout the year, including free screening to assist in early diagnosis. It’s advocacy efforts include organising workshops and meetings with political decision makers and media to highlight the social and human rights of children and adults with rheumatic diseases.

Picture of tablets and phones showing APMARR's resources

APMARR also promotes research in the field of rheumatology. On its 40th anniversary, APMARR launched a research project, conducted by WeResearch Institute, investigating the quality of life for people affected from rheumatic and rare diseases.

The results suggest that the negative impact rheumatic diseases have, may result in people having to rethink and reshape their “Life Plan”, particularly in relation to work, leading to a reduction in hours, change in job or having to stop work.

The study suggested that people who were unaffected by rheumatic diseases didn’t feel they had enough information about the conditions. It is thought that this lack of understanding in the general population is a contributing factor in the delay to diagnosis.

In recent years, research has better understood the mechanisms underlying numerous rheumatologic diseases. It has identified the role of inflammation and therapeutic targets, and developed innovative drug classes that can block the inflammatory cascade and lead to remission, if not cure. The goal of these medicines is to prevent disease progression and disability.

This new scenario necessitates a review of the changes in treatment and the diagnostic paradigm and, therefore, a revision in the language used to talk about rheumatologic diseases. The language must adapt to innovation, emerging needs and to the increased awareness of patients, who must be active participants in their treatment pathway.

Picture of a book called: “vocabulary of rheumatology" that APMARR has produced

For this reason, APMARR launched an educational project named “The vocabulary of rheumatology” to help patients navigate the wealth of information found on the web. It provides them with the tools to become protagonists of their own care pathway, exploring the terms that accompany the world of rheumatology. These terms come from the scientific sphere, including those related to drugs and biomedical science. This project is aimed at patients and caregivers, with the goal of familiarising them with the lexicon of rheumatology and making the concept of empowerment and engagement tangible.

The “vocabulary of rheumatology” is one of several initiatives promoted by APMARR to educate and inform people on the rheumatic and rare diseases. APMARR also involves and assists people through the toll-free number, its magazine “Morfologie” and its social media which reaches an online community of more than 5,000 users.

Patient representation is essential before health authorities since policies are changing and it is necessary to have their opinion on those reforms that may affect medical care and treatments. To this end, the Foundation interacts with other patient organisations to defend and voice their needs. Additionally, the Foundation has legal advice in situations of inconveniences in the provision of services as well as in the recognition of economic benefits such disability pensions.

Every day the Foundation is strengthened by the work carried out, generating positive impacts in the community and promoting solidarity among patients. We are grateful to all the volunteers who participate in the development of our work.

Find out more about APMARR

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Introducing our new Trustees

Following our recent call for new Trustees, we are delighted to announce the successful appointments. Please read more about it here.

Following our recent call for new Trustees, we are delighted to announce the successful appointments. Prachee Bhosle, Julieth Buitrago and Nadia Malliou. The quality of applications was impressive, and we thank all who applied. The new Trustees will bring fresh ideas and expertise to the Board. I am sorry to report that Susan Davies resigned from her position as Treasurer.

The full Trustee Board is now as follows:

Zhivko Yankov, Chair

Lillann Wermskog, Vice Chair

Andri Phoka, Secretary

Prachee Bhosle

Julieth Buitrago

Tuncay Duruöz

Nadia Malliou

Cassie Shafer

Prachee Bhosle, India

Prachee is the President of the Ankylosing Spondylitis Welfare Society (ASWS), a patient-led charity in India dedicated to raising awareness and advocating for axSpA patients and caregivers.

Prachee holds a Master’s degree in Social Psychology and a Postgraduate Diploma in Counselling Psychology. While raising her children and taking care of several pets, she remained committed to social work and advocacy.

Prachee has represented ASWS at international platforms such as the GAfPA Roundtable in Brussels, the EULAR Conference in Vienna, the ASIF meeting in Bogota, and the PARE Conference in Brussels. She was also a member of the Novartis Health Advocacy Council. Prachee continues to balance her family life and advocacy work, striving to create positive change for the axSpA community.

Julieth Buitrago, Colombia

Julieth was born in Colombia and raised in Bogotá. She earned her degree as a lawyer and business administrator. She specialised in labour law, social security and business management and has an MBA in Business and Administration.

She was diagnosed with axSpA in 2010 and since then has worked to lead and support the axSpA community and those with other conditions.

In 2014, Julieth became a founding member of the Ankylosing Spondylitis Foundation in Colombia, an organisation created to spread knowledge of the disease through a network of multipliers, to advance early detection and support patients by improving their quality of life.

Nadia Malliou, Greece

Nadia is a licensed cognitive and experimental psychologist experienced in various professional settings both in mental health services, primary care services and administration. She’s an axSpA patient herself and focuses on RMDs and chronic pain working as a volunteer with EULAR PARE, the Pain Alliance Europe-PAE, the European Pain Federation EFIC, ASIF, the Hellenic League Against Rheumatism ELEANA and the Federation for Rare Diseases.

Nadia recently started her PhD. Meanwhile, she’s a volunteer supporting patients in the Pain Unit of Thessaloniki General Hospital AHEPA. She has participated in several research projects either as a researcher or a patient research partner and has been an invited speaker in numerous conferences. Working with HCPs but most importantly with other patients has been a meaningful experience that contributed to her empowerment and self-improvement as a patient and a professional. Nadia’s inspirational quote is: everyone you meet is fighting a battle you know nothing about. Be kind. Always.

Making Access Happen

As we know, timely access to affordable and appropriate medications can significantly improve health outcomes and enhance quality of life. By expanding treatment options and promoting competition, generic and biosimilar medicines can improve access, sustainability of healthcare systems, and alleviate the societal burden of untreated illnesses.

Patient organisations provide a powerful voice for patients and can help policymakers understand the perspectives of the patient community as they work to implement better health policies. Many of our members play a vital role in enhancing access to medicines, educating their communities and empowering patients to make informed decisions.

Recently, ASIF participated alongside 30 patient advocacy leaders from 18 countries, in the Making Access Happen: Sandoz Global Access Forum.

One of the key highlights of the Forum was the Making Access Happen Consensus Statement, co-created with patient advocates worldwide, that addresses key strategies to make healthcare more accessible through generic and biosimilar medicines. The contributors outline 6 key actions:

Together, the patient advocates agreed that collaboration between patient organisations, healthcare providers, policymakers, pharmaceutical companies, and other stakeholders is essential for driving initiatives that improve access to medicines.

Our members can join the conversation on social media using #MakingAccessHappen. We will be sharing social posts about the campaign and encourage our members to share our posts or contact us for access to the content.

Download Consensus Statement

EULAR PARE Conference

The EULAR PARE Conference is an annual educational and networking event featuring a different topic each year and offering a high-quality programme for the RMD community with keynote speakers, debates and workshops spanning three days. Running from 28-30 November in Brussels, this year’s meeting focussed on the role of patients and patient representatives in rheumatology research.

Jo Lowe, ASIF’s Project Manager, represented ASIF at the conference and took part in several workshops exploring how to involve patients in research, including how to make collaborative research the standard approach and how to work with research consortia.

The workshops provided a fantastic opportunity to better understand barriers and to collectively develop solutions. The conference also provided valuable information on the EULAR manifesto campaign and advice on submitting abstracts to the annual EULAR congress. During the conference, several sessions were dedicated to Best Practice and Inspiration from the RMD community. These sessions give the opportunity to learn about PARE activities and projects presented by the community.

Patient and patient representatives from around the world presented almost 50 posters showcasing their work. Jo presented the ASIF poster about developing awareness materials on the ‘signs and symptoms of axSpA’. The winning poster was about a book developed especially for children with RMDs. The poster titled ‘THE BRAVERY BOOK: Malu’s Fantastic Hats for Dreadfully Annoying Rheumatism Days’ was presented by Caroline Kirsten from the German Rheuma Liga and a member of the Young PARE working group. You can read more about the book here.

American College of Rheumatology

Annual American College of Rheumatology annual meeting (ACR Convergence) 2024 took place November 14–19 in Washington, D.C.ASIF used ACR to continue dissemination of the International Map of Axial Spondyloarthritis (IMAS) findings. Drs Victoria Navarro-Compán and Denis Poddubnyy (pictured) from the IMAS Scientific Committee presented the poster on ‘Factors Associated with Pain Intensity in axSpA’.

The data analysis seeks to identify which factors, such as sociodemographic factors, lifestyle or comorbidities are most often reported alongside higher pain intensity. The poster identifies several factors, including difficulties in finding a job; poorer mental health; greater spinal stiffness and increased functional limitation; as well as a lower level of education (lack of university degree). The poster concludes that pain is a critical element and that to improve overall quality of life, pain reduction should be a priority of treatment.

Thank you to Drs Navarro-Compán and Poddubnyy for their continued support of IMAS.

Fundación de Espondilitis Anquilosante en Colombia

Since its creation, the Ankylosing Spondylitis Foundation in Colombia has contributed to helping those patients recently diagnosed, guiding, and promoting care to achieve a better quality of life and effectiveness in treatments or medical recommendations. The work carried out by the Foundation is achieved through social networks such as Facebook, Instagram, YouTube, LinkedIn and WhatsApp through which patients, caregivers, family members or other actors seek information and advice on Spondyloarthritis.

Patients are fundamental in the development of our mission, since we have sought to create a network of patients who multiply knowledge, who through education achieve empowerment for decision-making by making them participate in the responsibility of their care and in what can affect their health status. Likewise, we teach patients to have the ability to prepare their medical consultations in order to improve the doctor-patient relationship and ensure that health care is effective.

It is important that the Foundation seeks to raise awareness in society about Spondyloarthritis, which is an invisible disease in some cases and for which there is a lack of knowledge both in citizens and in the primary health care medical community; thus, through information campaigns in health care centers or public places, we deliver brochures that can raise awareness about a medical condition.

We have the support of stakeholders such as the academic and medical community who value the patient as an important actor in their research, trials, studies and seek to work hand in hand to innovate in pharmacological and non-pharmacological treatments and to have a better understanding of the condition in the patient by analysing the impact that a chronic disease brings with it.

We develop face-to-face meetings for patients, caregivers and family members that have the purpose of knowing and exchanging experiences, learning relevant aspects through the direct interaction of patients and health professionals.

Find out more

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.