Joanne de Bry, Author at ASIF

Your SpAce

The National Axial Spondyloarthritis Society (NASS) has launched new resources for people living with axSpA to get the most out of their medical appointments and navigate their care.

Together with people with people living with axSpA and healthcare professionals, they created short information and lived experience videos covering a range of topics in their Your SpAce programme, including:

Pain
Flares
Fatigue
Making medication decisions
Getting the most out of appointments

Advice on activity, exercise, and mental health is woven into all the topics. Alongside the videos, there are downloadable worksheets so people can build a practical toolkit to manage their axSpA and the impact it has on their life. Over 23,000 people have visited Your SpAce since March 2023 and the videos have been viewed over 17,000 times.

The content is free to access on YouTube and the NASS website. Translation is available for the webpages, which includes video transcripts, and auto-translated subtitles are available on the videos. It’s easy to dip in and out of the topics, to access what’s most needed at the time.

Since April 2023, NASS has run free monthly online meeting with over 450 attendees. Attendees are mainly in the UK, but people have joined from the Netherlands, USA, and Australia. The meetings have provided a welcoming community for people to meet other people with axSpA, often for the first time, and share advice with each other.

NASS Programme Manager, Zoë Clark, is presenting the results of Your SpAce at EULAR Congress and is keen to connect with other people who are attending. The session is ‘Exploring self-management: definitions and life’ on Saturday 15 June at 11:45 CEST. Please get in touch with Zoe (zoe@nass.co.uk) if you’re interested in meeting during the conference.

Zoë is happy to speak to patient organisations that are interested in developing similar programmes to Your SpAce and share NASS’ learning and experiences.

Find out more about Your SpAce

Biosimilar Medicines

AxSpA patients were recently represented at a biosimilar medicines patient leader workshop organised by Medicines for Europe. Rene Anour, Chair of the Biosimilar Medicines Working group at the European Medicines Agency (EMA) and Sarah Ikenberry from the US Food and Drug Administration (FDA) (pictured left) heard from ASIF’s Jo Lowe as she shared her thoughts on what people living with axSpA need to know about biosimilar medications. Both Rene and Sarah play a key role in providing patients with accurate and helpful information about biosimilar treatments.

About 20 patients and patient representatives from different disease areas attended the workshop, along with biosimilar manufactures. They each gave their view on what the most important considerations are when patient information about biosimilar medicines is put together. Opportunities like these are invaluable for ensuring the patient voice is heard by those creating drug-related information for patients. The event took place in Amsterdam on 17 April.

Following the workshop, Jo attended the annual Biosimilar Medicines Conference. The event addressed the main challenges in increasing patient access to biosimilar treatments, including building a European biosimilar strategy and how the impact of new policies can be measured. Sessions were also held on planning for future treatment needs and regulatory policy.

ASIF Council Meeting 2024: Colombia

ASIF members from around the world will gather in Columbia in October for our Council Meeting.

We have registrations from all continents and expect this to be the biggest ever meeting of organisations supporting people living with axSpA.

All participating organisations will have the opportunity to present a poster and there will be plenty of time to network and to share ideas. The programme will incorporate talks, panel sessions and workshops and will include:

The role of patient organisations in improving knowledge, attitudes and skills among healthcare professionals
IMAS and the wider patient-focused research agenda
Key axSpA issues in Latin America
Emerging therapies and new research in axSpA
The provision of psychosocial support by patient organisations: needs, gaps and best practice from around the world
Building the visibility and role of patient organisations in professional rheumatology networks.

In addition, we will hold a regional meeting for members and other stakeholders from Latin America on the afternoon of 16 October, the day before the main meeting begins.

We are very grateful to Julieth Buitrago from our Colombian member, Espondilitis Anquilosante en Colombia for her continuing help with the logistics.

If you have not yet registered or have questions, please contact Jo Davies. There is still plenty of time to get involved!

Spotlight on IMAS

Our celebratory ‘Spotlight on IMAS’ reception in Vienna is only days away. The event, the evening before the EULAR congress starts, will bring together our members, industry, healthcare professionals and key stakeholders. ASIF’s new ownership of IMAS is an important milestone and will help to inform ASIF’s future work. IMAS continues to help us understand how we can best support our members and provides us with exciting new opportunities.

The event will take place at the Wiener Rathauskeller from 18:30 to 21:30 on Tuesday 11 June. We will explore the key findings from IMAS and hear the real-life experiences of people who live with axSpA. Dr Victoria Navarro Compán, President Elect of ASAS, will give the Keynote address, alongside presentations by Dr Marco Garrido Cumbrera from the University of Seville, ASIF Trustee Andri Phoka, and our Executive Director, Mike Mandelbaum.

We hope to see you there.

RSVP here

IMAS in 2024

Read the report on our new IMAS webpages, where you can discover the results from survey participants in 27 countries, shining a light on the burden of living with axSpA. The report includes calls to action for healthcare professionals and policymakers, which target better public and professional understanding of axSpA, so that people with symptoms get an accurate diagnosis with minimal delay and the ongoing support and care they need.

Webinar, 13 March

To showcase the report and discuss what the evidence and calls to action mean for patients and patient organisations, we are holding a webinar on 13 March (12:00 to 13:30 GMT). As well as highlighting some of the key results from the report, we will hear clinician and patient organisation perspectives on how IMAS can be used as a tool for change. Please email Jo Lowe to confirm your attendance.

Spotlight on IMAS event, 11 June

A celebratory event will take place in Vienna, the evening before the EULAR congress commences. The event, on Tuesday 11 June (18:30-21:30 CET), will bring together our members, industry partners, rheumatologists, HCPs, and other key stakeholders. It will be an opportunity to celebrate the success of IMAS so far, its transition to ASIF and the patient community; and to share our plans for the future. Please contact Jo Lowe to secure your place.

Read the IMAS Global Report

Axial Spondyloarthritis Association of South Africa wins Award

Maranda van Dam presenting at the congress

The Academic Excellence and Recognition Award was presented to Maranda van Dam, Chair of ASASA during the SARAA Congress 2024.

ASASA won a similar award of excellence at the EULAR PARE (People with Arthritis/Rheumatism across Europe) Congress 2022.

The SARAA award was based on significant advances made by ASAS towards improving the quality of life of people living with axSpA in South Africa, as well as training done to build awareness in the medical fraternity around the condition.

ReumaZorg

The National Association ReumaZorg Nederland is the national Dutch user-led patient organisation, that strives to make a difference in the lives of people with rheumatic and muscular diseases (RMDs).

Having an RMD is a battle against a (lasting) disease, but also against pain, fatigue, loneliness and lack of understanding. Everyday people simply struggle to keep participating: at home, at school and at work.

We work and lobby for an early diagnosis, good healthcare and a healthy active life for people with axSpA. AxSpA mostly affects the spine, causing damage visible on X-ray (ankylosing spondylitis) or damage that doesn’t show up on X-rays (non-radiographic axSpA). Our advocacy aims at supporting people in the best way possible. We want to achieve this together with all people with axSpA and their families, researchers, healthcare providers and other stakeholders who can contribute to this.

As a national patient organisation, RZN is the member of EULAR for PRE for the Netherlands. It is also an associated member of EURORDIS.

Find out more about us at reumazorgnederland.nl

Galapagos Patient Partnership Day

On 15 November, Mike Mandelbaum and Jo Davies from ASIF attended Galapagos’ first ever Patient Partnership Day at their Head Office in Mechelen, Belgium. The one-day event was attended by representatives from around 30 patient organisations mostly representing RMDs, and many Galapagos employees from around the world.

The aim of the day was to share ideas about what good patient engagement (PE) is.

Patient engagement is maturing. Patients are rightly becoming more important in research and with policy makers and pharmaceutical companies.

There were sessions covering best practice, the importance of shared decision-making in clinical trial settings. There was also an opportunity to take part in workshops in patient engagement and communications and health literacy. The day ended with a poster session and dinner. ASIF members were also present, including Antonella Celano from APMARR and Andri Phoka from Cyplar, EULAR PARE, Agora and an ASIF Trustee.

Approaching the Conclusion: A Glimpse of the End for Ankylosing Spondylitis-Axial spondyloarthritis

Written by Muhammad A. Khan, MD, FRCP, MACP, Professor Emeritus of Medicine, Case Western Reserve School of Medicine, USA

This year marks the 50th anniversary of the groundbreaking discovery linking HLA-B27 to ankylosing spondylitis (AS)[1,2]. Beyond HLA-B27, over 116 additional recognised genetic risk factors have been identified, while exploration of environmental factors in this context remains limited [1,2]. Notably, HLA-B27(+) AS patients exhibit a distinct clone of potentially autoreactive (self-reactive) CD8+ T cells with TRBV9-containing T cell receptors (TCR) in their bloodstream and within inflamed tissues [2-4].

Figure 1 elucidates the persistence of autoreactive CD8+ T cells that manage to evade elimination in the thymus during early life. This phenomenon is observed in individuals born with the disease-predisposing HLA-B27 subtype (HLA-B27:05) but not in those born with the non-disease-predisposing subtype (HLA-B27:09) [3]. The proposed mechanism involves clonal expansion of these T cells upon exposure to microbial-derived peptides, followed by cross-reactivity with self-derived peptides. This cascade triggers an autoimmune inflammatory process, ultimately in AS in individuals with the disease-predisposing subtypes of HLA-B27 [3].

A recent outstanding study from a year ago has effectively unravelled the 50-year-old puzzle surrounding HLA-B27’s role in AS [5]. This breakthrough has notably expedited the potential for targeting and eliminating disease-causing T cells, offering promising prospects for curing those affected [5].

A subsequent groundbreaking paper, published a month ago, highlights the success of targeted elimination of the disease-causing TRBV9+ T cells in an HLA-B27(+) patient with AS [6]. After successful testing in nonhuman primate models, the authors observed a dramatic efficacy in elimination of these T cells in AS. The patient achieved remission within 3 months, discontinuing anti-TNF therapy used for 5 years. Complete remission has now persisted for 4 years, with three annual doses of anti-TRBV9 treatment [6].

The authors aptly concluded that the selective depletion of a TRBV9-defined group of T cells presents a promising avenue for safe and effective therapies in AS. This innovative approach may extend to other HLA-B27-associated forms of spondyloarthritis [6]. Targeted elimination of the disease’s root cause, without resorting to systemic immunosuppression, holds the potential for a new era of safe and efficient autoimmune therapies.

These pivotal advancements not only signify a paradigm shift but also enhance the prospect of preventing the disease in individuals with high-genetic risk factors [5,6]. Furthermore, the discovery of enhanced biomarkers, coupled with the evolving technology of electric field molecular fingerprinting, holds promise for significantly improving early diagnosis and facilitating the initiation of curative treatments [2].

REFERENCES:

1. Braun J, Sieper J. Fifty years after the discovery of the association of HLA B27 with ankylosing spondylitis. RMD Open. 2023 Aug;9(3):e003102. doi: 10.1136/rmdopen-2023-003102.
2. Khan MA. HLA-B*27 and ankylosing spondylitis: 50 years of insights and discoveries. Curr Rheumatol Rep. 2023. doi: 10.1007/s11926-023-01118-5.
3. Khan MA, Mathieu A, Sorrentino R, Akkoc N. The pathogenetic role of HLA-B27 and its subtypes. Autoimmun Rev. 2007;6(3):183-9. doi: 10.1016/j.autrev.2006.11.003.
4. Garrido-Mesa J, Brown MA. T cell Repertoire Profiling and the Mechanism by which HLA-B27 Causes Ankylosing Spondylitis. Curr Rheumatol Rep. 2022 Dec;24(12):398-410. doi: 10.1007/s11926-022-01090-6.
5. Yang X, Garner LI, Zvyagin IV, Paley MA, Komech EA, Jude KM, et al. Autoimmunity-associated T cell receptors recognize HLA-B*27-bound peptides. Nature. 2022;612(7941):771-7. doi: 10.1038/s41586-022-05501-7.
6. Britanova OV, Lupyr KR, Staroverov DB, Shagina IA, Somov DV, Klimenko A, et al. Targeted depletion of TRBV9+ T cells as immunotherapy in a patient with ankylosing spondylitis. Nat Med. Oct 23; 2023. doi: 10.1038/s41591-023-02613-z.

ID: http://orcid.org/0000-0003-4704-8311

Correspondence: m.asimkhan@gmail.com

Website: WWW.HLAB27.COM

ASIF Council Meeting 2024

ASIF Members from around the world will gather in Columbia in October for our annual Council Meeting.

IMAS will feature as a central theme throughout the meeting. Presentations, discussions and workshops will include raising awareness among healthcare professionals, emerging therapies and research, and how our members can use IMAS to facilitate their work. One of the most anticipated sessions will be an opportunity for our members to present their organisations, campaigns and work. Importantly, delegates will have time to network, share ideas, build new relationships and create opportunities for collaboration.

Invitations have been sent and we look forward to assisting delegates with their attendance. Please contact Jo Davies (office@asif.info) with questions about the Council Meeting.