The materials can be used by our members, and by patients and caregivers. The improved site will also signpost healthcare professionals to relevant axSpA information and tools.
Our mission is ‘to advocate globally to improve the lives of people affected by axial Spondyloarthritis and related conditions. To grow, strengthen and empower our community, and to raise awareness around the world’.
We want to help our members to do that too, so we have created a range of guides that support members’ work. The materials range from a step-by-step guide to create a new patient organisation to guidance on getting support from pharmaceutical companies; from social media and websites to fundraising and working with volunteers.
We are proud to have also produced four new guides about axSpA, including a detailed overview of the disease, as well as how to live well with axSpA and treatment options. We have a comprehensive guide on exercise and movement that is complemented by a new set of exercise videos. All of these guides are editable and can be adapted by our members to include their own logo and contact details, providing a ready to use resource for your own members.
The existing resources and links to members’ resources remain in place. But they are now organised over three sections: about axSpA; patient organisation support; and exercise and movement. We encourage you to look through the new webpages and, as always, we welcome your feedback.
Fundraising, specifically direct or sometimes known as community fundraising, is the topic of our March Webinar (postponed from February).
Liz Marshall will speak about how NASS uses Walk Your AS Off to raise funds. Sean Ewart will discuss the different types of community fundraising that the SAA implements.
Please email us at admin@asif.info to secure your space (Members only).
Michael Mallinson attended the American College of Rheumatology (ACR) Convergence Meeting in San Diego in November 2022. He has provided a series of comprehensive reports on key sessions.
Thank you, Michael for your commitment to sharing information for the benefit of people living with axSpA.
Click on the reports to read them:
ASAS-EULAR Recommendations for the Management of Axial Spondyloarthritis: 2022 update
For an Exploratory Analysis of the Potential Disconnect between Objective Inflammatory Response and Clinical Response following Certolizumab Pegol Treatment in Patients with Active Axial Spondyloarthritis, read here.
Bimekizumab Improves Signs and Symptoms, including Inflammation, in Patients with Active Non-Radiographic Axial Spondyloarthritis: 24 Weeks Efficacy and Safety from a Phase 3 Multicentre, Randomized, Placebo-Controlled Study, read here.
Continuing (Full or Reduced Treatment) versus Withdrawing from Golimumab in patients with non-radiographic axial spondyloarthritis who Achieved Inactive Disease: Efficacy and Safety Results from a Placebo-controlled, Randomized Withdrawal and Retreatment Study (GO BACK), read here.
Comparison of the Effect of Treatment with NSAIDs added to Anti-TNF therapy versus Anti-TNF therapy alone on Progression of Structural Damage in the Spine over Two Years in patients with Ankylosing Spondylitis: an Open-Label Randomised, Controlled, Multicentre trial (CONSUL), read here.
Profiling of Systemic Immune Responses in Axial Spondyloarthritis Patients reveals Strikingly Distinct Cellular and Molecular Mechanisms of Action of IL-17A Inhibitors and TNF Blockers, read here.
At the end of 2022, ASAS (Assessment of Spondyloarthritis International Society) and ASIF signed a Memorandum of Understanding (MOU) to put our relationship on a more formal footing.
This MOU means that both organisations will aim to keep each other informed of key plans agree to identify opportunities for collaboration and will contribute expertise and experience towards mutually agreed objectives.
The Trustees of ASIF were delighted to be invited to send two representatives to attend the ASAS 2023 Annual Meeting which took place in Athens in January. Andri Phoka, Secretary, ASIF and Jo Davies, Assistant Director, ASIF joined the meeting.
We are especially thankful to Xenofon Baraliakos, President of ASAS and to the rest of the Executive Committee for making us so welcome. During the meeting, ASAS educational activities and research projects were presented and discussed. This report covers just a few highlights from the ASAS 2023 Annual Meeting.
This year we want to see more teams participating in Walk Your AS Off than ever before.
The Walk AS One team have been working hard to make the event more accessible, with the website now available in different languages.
We encourage our members and supporters to create a team and invite their local community and colleagues to join it. Find out more about what’s new with Walk Your AS Off below…
Walk Your AS Off is excited to share that the new language translation has been implemented on the Walk Your AS Off website and will be on the step reporting application at Walk AS One soon! With language translation available to any Google Translator language we are looking forward to more ASIF teams and walkers!
There are also a number of small changes happening to both websites to help make navigation easier and information on participation simple and clear.
New information for email subscribers will be sent to help ensure your teams are up to date on all event information including a weekly prompt/reminder each Sunday in May to log in and record steps. This will include a direct link to login and a QR code, and printable log for those that prefer having something that isn’t digital.
Walk Your AS Off is really excited about our 2023 campaign! We will be looking for walk selfies (a photo ‘selfie’) again this year especially during World AS Day! Please use the hashtag #ASwalkselfie or #axSpAwalkselfie on Instagram and Facebook so that we may track and share our members and teams where they walk across the globe! These will work amazingly in conjunction with the ASIF key messages and hashtags being used on World AS Day.
We are two months into our Walker Wednesday live feed each Wednesday at 2pm US Eastern Time /7pm GMT. If your organisation would like to share about your team and organisation we’d love to have you on a Zoom call. These Zooms are shared live on Facebook as well. We’re also compiling a library for them on YouTube.
Feedback and suggestions from all ASIF member organisations on what future features you would like to see on the website and Walk Dashboard are really appreciated. Please email us at info@walkasone.org with any thoughts, suggestions, or concerns.
World AS Day is only two months away. If you missed our World AS Day Webinar, you can watch it here. The Webinar talks you through the campaign, the available assets, and how you can make the most of World AS Day.
One of the downloadable assets is a template calendar for social media. It includes the dates that ASIF will post/tweet content. We encourage you to follow the calendar; however, you are welcome to adapt it to your organisation’s existing social media calendar and post/tweet when it works best for you. ASIF will begin sharing content slowly from the end of March, launching the campaign fully in April.
Following feedback from one of our members, the editable templates have also been made available in Canva for those not using Photoshop. The link to the templates can be found in the downloadable Tool Kit.
Visit the webpage to find out more about the campaign and download the Tool Kit and editable assets (asif.info/worldasday).
Global Stretching Events
On World AS Day, we will host two online stretching events to enable as many people around the world to join as possible (the times and information on how to join the events will be confirmed soon). The sessions will be designed for everyone with axSpA, giving options for each stretch from very gentle for those with limited movement, to more of a challenge for those who are more flexible. We are excited about bringing the global axSpA community together through movement.
The events will be run by Jamie Boder, co-Founder of Yoga for AS. Jamie is a qualified yoga instructor and has axSpA himself, so understands the challenges posed by the disease, and the positive impact movement makes.
Jamie commented, “I am delighted to share these sessions with you; it will be an opportunity for you to find something that works for you. I understand the many ways AS / axSpA presents itself. These sessions are open to everyone. In my experience, after sharing these types of sessions to thousands of people with AS and axSpA, many people come out from the sessions with less pain, stiffness and fatigue. That is the magic of movement. My classes are very inclusive, fun and welcoming and I look forward to seeing you there!”
Global Summit
As the premier virtual health event for the spondyloarthritis community, the 5th Annual Global Spondyloarthritis Summit features renowned rheumatologists and other health experts who provide the most up-to-date findings and medically reliable and comprehensive information on essential topics that matter to those living with the disease.
Whether you are newly diagnosed or were diagnosed some time ago, the Summit is your opportunity to learn tips and tools for managing your symptoms while also connecting with others.
Under the theme “Moving Together Towards Better Health Outcomes” this year’s program features 12 experts from the international community who will discuss topics such as Flares and Possible Triggers; SpA Research Updates; Sleep Issues; Women & SpA; Diet & Nutrition; Surgery & Joint Replacement Recommendations; Cardiovascular Disease, and more!
ASIF will have a Booth at the Summit and will display information about our Members. Please send your organisation’s leaflet to Jo de Bry before 31 March at communicationsmanager@asif.info.
Please use the downloadable social media asset on our World AS Day webpage to promote the event to your members and encourage them to register.
“I joined ASIF a few weeks ago, excited to embark on a voyage of discovery into the world of axSpA and rheumatology. While I have not yet sailed the high seas of axSpA, I have been inspired by the view from the shallow waters and am glad to share my early thoughts with you (although maybe with no more sea-faring metaphors!).“
“My previous knowledge of back health comes from personal experience, having had back problems for more than 20 years. While not axSpA, I have insight into back pain and how easily a flare-up can be triggered.”
“For many years I led a tuberculosis NGO, a disease with high levels of health inequalities. I also see inequalities in access to diagnosis and treatment for axSpA: the pain and disability will disproportionately affect countries with less developed healthcare systems, as well as people without access to quality healthcare or the ability to insist the pain is not in their head.“
“ASIF’s mission is to ‘grow, strengthen and empower our community’. In my first contact with members I have been impressed by your energy, ability and determination to make change happen in your countries. As an international organisation we understand that some of our members’ ambitions and challenges are similar, while others must adapt to local healthcare systems and structures. Our approach is based on combining ASIF’s access to global expertise with your local skills and knowledge, all aimed at helping you improve the health of your communities and countries.“
“I hope to talk with many of our members during the coming weeks and months to learn more about AS and axSpA in your countries, the work of your organisations and how ASIF can best support you. Our members are the reason for our work – first and foremost we are guided by your needs. Please contact me at any time on executivedirector@asif.info – I will always be glad to hear from you.”
Rheumatology a New Dawn in Africa but what about Advocacy?
Author Maranda van Dam- ASIF Trustee, Chairperson ASASA South Africa
There is a massive lack of rheumatologists in Africa. According to a study done by the ACR in 2015, the ideal ration would be 2:100 000.
Africa currently has 150 rheumatologists serving a population of 1.25 billion, which is a mere 0.012:100 000. The majority of the rheumatologists (85) are in South Africa (60 million population) with the remaining 65 serving 1,240 billion people.
A roadmap must be created to increase the number of rheumatologists and enable more equitable access to healthcare across Africa.
Maranda van Dam and Prof. Olyfemi Olafipp Adelowo
In contrast to earlier reports, rheumatological conditions are now not considered to be rare in Africa and several articles reflect this. With globalisation on the increase, we are seeing migrants from Sub-Saharan Africa, living in the West, where they receive good attention and care.
The African League of Association (AFLAR) represents all 54 countries in Africa; and on 22 February I travelled to Nairobi, Kenya to attend its conference.
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The first day was spent doing clinical training at the AGA Khan University Centre, where topics included examination of the upper limbs, lower limbs and spine. The joint injection workshop was also highly rated by the scholars.
The keynote speaker at the AFLAR Conference was Prof Anthony Woolf, handling an important topic of the Global Burden of RMSs, and how the global rheumatology community should respond.
Herewith his key messages:Musculoskeletal health is central to wellbeing and healthy independent lives. Musculoskeletal disorders are common in all countries and cultures. In fact, the impact across Africa is much larger than previously thought.
This major cause of disability places a significant burden on health and social care. There are effective ways of preventing and controlling musculoskeletal conditions but these are not implemented with equity. There is a lack of policies and priorities for musculoskeletal conditions and investments in prevention, treatment, education and research.
Prof. Woolfs’ key recommendations were to educate and engage communities and governments, integrate MSK health into policies, build capacity, sustainable financing and surveillance. The importance of the strategic work at the WHO regarding MSK diseases could not be understated.
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Over the next two days we listened to revealing abstracts out of different parts of Africa, and herewith some highlights:
Nairobi, Kenya – a call was made for urgent registries for understanding the burden and impact of MSK and autoimmune diseases in Africa and improving the diagnosis, treatment and management of these diseases.
East Africa – a total of 1089 community consultations in Zambia and Kenya were completed and a total of 271 people reported with MSK issues. Only 3% represented inflammatory joint disease.
Nigeria– a total of 127 SpA patients were seen over a 12 year period, with 81% having AS. This demonstrates the prevalence of axSpA in North West Nigeria. HLA-B27 was prevalent, as was a significant delay to diagnosis.
Dakar, Senegal – 23 cases were found associated with this disease of which 76% were females. The HLA-B27 gene was found in 52% of the cases.
The key takeaways from AFLAR were:
Massive shortage of specialists care across the continent
No access to correct medications and care
Shortage of MRI imaging
Many countries in Africa do not have their own rheumatologists
No robust data available to support funding.
Development of accurate registries
No excising patient support networks in Africa for RMD’s
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Unlike South Africa and Algeria, patient support networks for axSpA are a foreign concept in the rest of Africa. I only found one other patient group that attended the conference (they support people with SLE). This was a topic of much discussion during AFLAR, the birth of patient support and advocacy across Africa and in all the continents that have rheumatologists. Africa not only has a shortage of specialist care for our RMD patients, but patient support is extremely uncommon.
The paucity of epidemiological data is partly driven by the low number of practicing rheumatologists in Africa.
Parts of Africa have widespread infectious diseases like HIV and hepatitis and regular breakouts of cholera, malaria and measles. Resources and medical care are funnelled to take care of these patients, RMD resources being much less prioritised.
The role of the traditional healer plays a massive role in the delay to diagnosis of a lot of patients; in South Africa 80% of the population seek health care from traditional healers and many people seek health care from both traditional and western medicine.
It is essential to invest in the development and maintenance of accurate patient registries across Africa to address the high burden of musculoskeletal and autoimmune diseases on this continent. Registries can also monitor the quality of care for patients with MSK diseases.
The importance of patient support is lost in most parts of Africa. Education, especially with a focus on West, East and North Africa, needs to be the focus over the next 5 years. It should have a special focus on the role a patient support network can have on already overburdened specialists.
During the AFLAR Conference, I presented two abstracts, on behalf of ASIF and the Axial Spondyloarthritis Association of South Africa (ASASA). I spoke about Delay in Diagnosis Spondyloarthritis, in South Africa and Understanding Mental Health in patients with Axspa. The abstracts were received with much enthusiasm and many questions. Hearing from a patient group was indeed a foreign occurrence for most in the room.
As a new dawn breaks in Africa for rheumatological diseases, a massive need for patient advocacy and support groups will grow exponentially. The lower income countries rely heavily of Western countries for support and education, which makes this hopeless situation seem less so. Most of the African countries now require their specialists to qualify with the EULAR educational course, which sets the bar for the training very high.
There is no doubt that the growing number of RMD patients across Africa will create a massive burden on patient care and support systems. The role of patient support is a crucial element of a normal health system. The needs of a RMD patient are often much more than a clinical appointment. In the foreseeable future Africa will face the challenge of offering patient support to already impoverished countries.
As one of our colleagues said during the conference: ”If you do not think that you will make a difference, no matter how small you are, you have clearly not been in a room with a mosquito”.
REFERENCES:
Ibrahim DA, Na’Isa MBK, Hamidu A, Profile of Spondyloarthropathy patients in Kano, Northwestern Nigeria, African Journal of Rheumatology Volume 11, January 2023m ISSN 2307-2482
Charifah S, Niasse M, Gueye YA, Diallo S, Spondyloarthritis and autoimmune diseases: preliminary study of 23 Senegal Cases
Genga EK, Call for Action: development of patient registries in Africa
Ruta Grigiene from Lithuania tells us why she joined our Board of Trustees
“I became a member of ASIF’s board of trustees in 2014, quite unexpectedly to myself. When I was diagnosed just half a year prior, I almost immediately got involved with the Lithuanian AS patients’ association. The association delegated me to participate in the ASIF conference, held in Sofia that year, with the goal of having the Lithuanian AS association become a member of ASIF. This goal we succeeded in.
While I enjoyed the experience, it came to me as a complete surprise when I was myself invited to become a member of the ASIF trustees team.
“At first, I was rather unsure what good I could achieve as a Trustee, how I would be able to help. However, little by little, I got involved in all the activities going on and am proud to be part of the team. We all learn and grow together, bringing more and more member countries into the ASIF family, so that we can help new organisations and execute global projects (IMAS, Delay to Diagnosis, as well as others).”
We are recruiting for new Trustees in anticipation of some of our current Trustees stepping down next year. If you are interested in joining the ASIF Board, please contact Jo Davies at office@asif.info.
It was with great sadness that we learned of the passing of Prof. Dr. Ernst Feldtkeller at 92 years of age (October 19, 1931 — January 4, 2023). He was truly a remarkable and inspiring person, scientist, and researcher, with a PhD in Physics. He was appointed Professor at the Universities of Stüttgart and Munich, and a researcher at the Siemens Research Laboratories in Munich. He had suffered all his adult life from ankylosing spondylitis (frequently called Morbus Bechterew in German-speaking countries), and in 1980 he played a pivotal role in the formation and subsequent management of the German Ankylosing Spondylitis Society named Deutsche Vereinigung Morbus Bechterew (DVMB).
Prof. Dr. Ernst Feldtkeller
He authored an excellent book in German on ankylosing spondylitis for educating patients and their families and was the Scientific Director of the editorial office of the DVMB membership journal called Bechterew Brief. He was fluent in English, and he used to translate important English publications into German for the readers of his Journal. He selflessly put all his creativity, knowledge, and skills into the service of the DVMB and other organisations over the last 42 years.
On 8 April 1988, Ernst became a member of a committee that was formed, at the invitation of Fergus Rogers (of National Ankylosing Spondylitis Society, U.K.), to carry out the preliminary preparations necessary for the foundation of an International Ankylosing Spondylitis Association (which later became Axial Spondyloarthritis International Federation – ASIF). He was invited to attend the first ASIF Council Meeting in Leukerbad, Switzerland in July 1989, hosted by another remarkable patient and scientist Dr. Heinz Baumberger, PhD [1]. He was elected as a Vice-President of ASIF in 1992, a position he held until 2009. Thereafter, he served as ASIF’s Scientific Adviser until retiring from this role in 2017.
After his retirement from Professorship in 1992, Ernst devoted his full attention to doing scientific studies and clinical research in ankylosing spondylitis. In 1996 he obtained financial support from the German Federal Health Ministry and initiated a professional survey among the more than 14,000 patient members of SVMB. 1614 patients responded to this survey, and extended reports of the results were published in five issues of Bechterew Brief in 1997-1998. He then presented these results in English at the 1st International Congress on Spondyloarthropathies, in September 1998 in Gent, Belgium. Over the years Ernst had published many highly cited articles in German and English, and based on his extensive contributions, he was awarded membership of the Assessment of SpondyloAarthritis international Society (ASAS).
Ken Mulholland (ASIF Secretary 2002-2011) recalls meeting Ernst at the first ASIF Council Meeting; “My early impression of Ernst was his extensive knowledge of the disease, his research, and his extensive publications. Over the years, I got to know Ernst little more and see how instrumental he was in introducing Ankylosing Spondylitis to the world through his development of the ASIF website. Ernst was very meticulous in all his workings.”
I first met Ernst at the first ASIF Council Meeting in Leukerbad in 1989 and we became lifelong friends and co-authored two of his many highly cited publications [2, 3]. I frequently exchanged with him articles of interest and helped maintain Ernst’s remarkable personal library of articles from medical journals stored either digitally in a PDF format or, in some cases, as printed documents. He shared his personal library with me, and I sincerely hope that it will be kept alive and up to date.
Ernst’s other interests extended to mountaineering, cycling, playing the flute, and painting beautiful watercolour landscapes (pictured), many of which he generously gave away to friends and colleagues. He was also an avid photographer, always carrying his camera with him, and he regularly summarised important scientific meetings along with pictures of scientific presenters.
With Prof. Dr. Ernst Feldtkeller we have lost a valued companion, a respected fellow patient, and a good-hearted and charismatic personality. His unparalleled commitment, diligence, frugality, and modesty were an example to us all.
With his exemplary commitment to those affected, Ernst Feldtkeller earned a high and lasting reputation in the global spondyloarthritis community. Ernst’s contributions to DVMB and ASIF, and to the rheumatology and patient communities at large, will be sorely missed.
REFERENCES:
Khan MA., Accomplishments of Heinz Baumberger PhD: A remarkable patient with ankylosing spondylitis for 72 years, Clin Rheumatol. 2016 Jun;35(6):1637-1641. doi: 10.1007/s10067-016-3259-0.
Feldtkeller E, Bruckel J, Khan, MA., Scientific contributions of ankylosing spondylitis patient advocacy groups. Current Opin Rheumatol. 2002 Jul;12(4):239-247. doi: 10.1097/00002281-200007000-00002.
Feldtkeller E, Khan MA, van der Heijde D, van der Linden S, Braun J., Age at disease onset and diagnosis delay in HLA-B27 negative vs. positive patients with ankylosing spondylitis, Rheumatol Int. 2003 Mar;23(2):61-66. doi: 10.1007/s00296-002-0237-4.
