December 2024

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

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.

Rheumacensus

Navigating healthcare appointments with confidence

The challenges that come with axial spondyloarthritis (axSpA) can be varied, which calls for a personalised approach to care. Shared decision-making encapsulates this idea by bringing together the expertise of healthcare professionals (HCPs) and the lived experience of those with axSpA to create a strong alliance in the management of healthcare decisions. RHEUMACENSUS, an initiative led by HCPs, payors and patient representatives, is dedicated to elevating the standard of care for patients with axSpA. With the support of UCB, the initiative has launched a step-by-step guide to help patients prepare for their healthcare appointments. A similar guide has also been developed to support those with psoriatic arthritis.

How do these guides work?

Patients often feel rushed during their appointments, highlighting the need to create a tool that empowers them. By providing a step-by-step approach to follow and prepare for healthcare appointments, these guides encourage patients to consider:

1. Their current condition, goals for treatment and what they want to discuss in their appointment

2. Their role in making decisions about their management plan

3. How to communicate effectively with their healthcare team in both in-clinic and virtual appointments

Complete with prompts and examples of key questions that patients can ask, these consultation guides help to ensure that patient concerns are fully addressed. This is important to enable patients to gain a deeper understanding of their disease and management options.

This tool is also available for HCPs to offer and share with their patients, and ultimately aims to help patients achieve improved health outcomes.

View your copy of the axSpA consultation guide here.

ASIF is proud to have been involved in the development of the Guide. Andri Phoka, ASIF Trustee, provided input and guidance as a member of the Rheumacensus Consensus Council Members and was the lead on the axSpA patient representatives committee.

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.