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We currently have 200 registered members that have axSpA.

With a growing membership daily, our role has never been more important.

If we look at the world numbers, and we use a conservative estimate in South Africa of 1 in 500, we would be looking at roughly 160 000 patients with axSpA in South Africa. A lot of patients are not diagnosed or are diagnosed with mechanical back pain without having any treatment.

We have a huge, underdiagnosed situation in our country and if you think about the 80 rheumatologists we have and 60 million strong population, that is little wonder.

This problem spreads into Africa, where there are merely a handful of rheumatologists that service all the countries. Most of the patients are then sent to South Africa for treatment.

Voice of the Expert and Voice of the Patient Campaign

South Africa has been in lockdown for most of 2021. This has caused a great deal of anxiety and stress among our members.

      

To bridge that, we then aimed to make a connection, bringing the experts to our patients, in the comfort of their own homes.

The Voice of the Patient campaign was designed to bring live witness to patients that have axSpA, to share their own personal story with our members. This also creates the feeling of shared mutual disease burden and makes our patients feel less alone.

The feedback has been overwhelming and this has been the most asked for resource since we have launched this campaign

This has also given our rheumatologists the chance to get involved with the axSpA community.

     

Walk Your AS Off

South Africa walked this year in full force, and more than doubled our steps to over 7 million. More than 42 members participated in this event.

Walk Your AS Off takes place in May, and is a one of many activities around World AS Day.

– By Maranda van Dam, Chairperson of Axial Spondyloarthritis Association of South Africa

Find out more about the Axial Spondyloarthritis Association of South Africa.

EULAR highlighted the project in an Abstract presentation, a Poster and a press release here 

Dr Dale Webb, from the Delay to Diagnosis Sub Committee and Chief Executive of NASS, delivered the Poster presentation and Abstract presentation during EULAR 2021. EULAR’s recognition has been welcomed by everyone involved in the project. It has given ASIF an opportunity to raise awareness of the key issues created by the delay to diagnosis with rheumatologists and other key stakeholders from around the world.

 

Thank you to EULAR for recognising the importance of the report.

Please read EULAR’s  Press Release

 

The Delay to Diagnosis Report will be published on 28 June and ASIF will hold two launch events on 7 July.

Find out more.

IMAS Wins EFPIA’s Connecting Healthcare Award!

EFPIA’s independent jury chose IMAS as the overall winner from 60 projects

 

“Alongside our partners, Novartis and the University of Seville, I am proud to accept the 2021 Connecting Healthcare Awards – thank you EFPIA. I am delighted that IMAS has been recognised for the significant impact it will have on the lives of axSpA patients. Thank you to all the IMAS partners and the patients who have participated.” – Zhivko Yankov, President of ASIF

The European Federation of Pharmaceutical Industries and Federations’ (EFPIA) independent jury chose IMAS as the overall winner from 60 projects.

By working closely with Patient Organisations, clinicians and researchers, we have gained evidence about how people with axSpA experience their disease, physically, psychologically and socially.

Jo Lowe, ASIF’s Project Manager, and our colleagues from Novartis and the University of Seville talk about how they worked together on this important project.

Thank you to the thousands of patients around the world who have participated in the IMAS project and have helped us uncover the issues that are most important to them.

Here below the first IMAS Video capturing the experiences of real patients and how axSpA impacts their emotional wellbeing and mental health.

 

We are delighted to welcome three new members to ASIF: Hellenic League Against Rheumatism in Greece, the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) and Ankylosing Spondylitis  Welfare Society in India.

Hellenic League Against Rheumatism Hellenic League Against Rheumatism was established in 1978 in Athens and today has 7,700 paid members and followers. The league has nine branches in main cities across Greece and enjoys strategic cooperation with​ a number of related organisations. Read more

The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) helps those who are affected by autoimmune and autoinflammatory diseases – with arthritis as a major early component. It supports them to use their voices – as equals alongside other stakeholders – to solve problems that impact education, advocacy, and research. Read more

 

Ankylosing Spondylitis  Welfare Society (ASWS) Ankylosing Spondylitis Welfare Society is a pan-India organisation formed by AS patients to help support fellow patients. Their aim is to reduce the delay in diagnosis so that axSpA patients are able to enjoy a better quality of life. They are keen to provide emotional support to patients and their caregivers and let them know they are not alone in this new journey in their life. They are determined to get Ankylosing Spondylitis / Axial Spondyloarthritis included in India’s National Insurance, so that no patient suffers due to lack of funds. ASWS want to provide as much financial assistance as possible for patients so that they can realise their dream of living as normal a life as possible. Read more

Despite concerns of possible risk factors, very few patients with axial spondyloarthritis have been infected with the coronavirus so far.

“This is very good news. It looks like the axSpA-patients have been protecting themselves, adhering to the advice of the health authorities and taking the risk of infection seriously,” ASIF-president Zhivko Yankov says.

By Trine Dahl-Johansen

COVID-19 has caused global disruptions in the management of chronic illnesses like axial spondyloarthritis (axSpA). The extent to which patients with axSpA have been affected by the coronavirus needed to be established, and Axial Spondyloarthritis International Federation (ASIF), The Spondylitis Association of America and survey company Any-3, developed the international COVID-19 axSpA-survey, which opened in April.

The preliminary results show some of the effects of the pandemic for this patient group and are based on answers through the questionnaire for the period of 3rd April to 31st October 2020. There are 4900 patients across 72 countries who have answered the patient survey. 93 % have completed all the questions.

The good news

Easy interventions like keeping distance, isolating from other people, washing hands, using antibacterial liquid and face masks etc. in public are essential to avoid infections like the coronavirus. Only 4 % of the total survey population report they have had the coronavirus. This is good news, but many of the respondents have not been tested to confirm it and are self-diagnosed. A lot of the symptoms of COVID-19 are very similar to those of an ordinary cold or flu, like fever, fatigue, sore throat and continuous cough. Therefore, it is almost impossible to know for sure if you have Covid-19 without being tested.

Despite the low COVID-19 testing, the low numbers in coronavirus patients amongst the axSpA-group is probably due to many taking the risk of viral infection seriously and doing what they can to protect themselves from such an infection. As chronically ill, many axSpA patients are used to taking illness seriously and making changes when life presents challenges. The ability to adapt to fluctuations in the disease throughout life probably leads to people coping with such a pandemic situation better than many feared.

“It is still amazing that so few with rheumatic diseases are infected with COVID-19 during this period,” Zhivko says.

Adapting to the situation

Many might also easily adapt to the rules of isolation and less social activity because they already are limited due to their health challenges in everyday life. For example, those who live with a lot of pain, fatigue and impaired mobility are accustomed to pacing their activities, and many already have a limited level of activity and social life. For many people with axSpA activity regulation is important, so they are able to accomplish the most necessary things.

“Our members are used to accepting periods where you cannot do everything you want. Many have probably adapted well to the pandemic restrictions and have good skills when it comes to taking care of their own health,” Zhivko elaborates.

Response to the global coronavirus pandemic has resulted in major changes to how people go about their daily lives. A study presented at ACR 2020 shows that individuals with axSpA with higher levels of stress and anxiety, had significantly higher disease activity levels. [1]

Good recovery status

The low frequency of testing for the coronavirus is a well-known situation internationally, due to variable test capacity worldwide, which leads to a very different situations for each country represented.

Although patient-reported outcomes have limitations, especially regarding the accuracy of self-diagnosis of COVID-19, the current results from the survey may add to more knowledge on potential risk factors and the course of this coronavirus infection in axSpA-patients.

Several international data show there are very few patients with rheumatic diseases who have contracted the virus, and few have been hospitalized or died because of infection. This is the same trend as the axSpA-survey.

Now it is crucial to get more responders to answer the axSpA-survey, especially those who have been tested for COVID-19, regardless of whether they have a positive or negative test result. It will provide the survey with better data and higher credibility.

“I encourage all ASIF-member organizations to invite more people to respond to the survey,” Zhivko says.

The following link allows new participants to self-register: https://covid19-axspa.any-survey.com/go/

Similar risk factors

The risk factors for people with autoimmune diseases are the same as for the general population. Those who also have cardiovascular disease and get infected with the coronavirus often have a tougher course, and are at higher risk of death, but they are not at a higher risk of getting infected overall compared to the normal population, according to The COVID-19 Rheumatology Alliance. [2]

This is supported by more studies released during the digital EULAR-congress in June.

“The study shows that most patients with rheumatological conditions recover from COVID-19, independent of the medication they receive,” professor Dr. John Isaacs, Chair of the EULAR Scientific Committee stated in a press release. [3]

Some concerns

The preliminary results of the axSpA-survey also enhance some worries regarding some patients discontinuing their medications during these months, often without consulting their rheumatologist. Amongst the patients with more severe disease measured by BASDAI the percentage of those discontinuing their medications also increases. The data show that amongst those who measured between 6 and 10 on the BASDAI-scale from 1 to 10, 19-28 % had changed their medication in fear of COVID-19. This is a big concern because this might lead to flare-ups that requires a doctor’s appointment in a health system already overloaded.

In total 17 % of the 4900 respondents report they have changed their medications due to the concern of COVID-19. In the age groups 20-29, 30-39 and 40-49 more than 20 % have done this. Type of spondyloarthritis diagnosis does not seem to influence this decision. Neither do other diagnoses believed to affect the coronavirus, like high blood pressure, chronic lung disease, diabetes, heart disease and heart failure, systemic lupus or cancer.

The answers about changing medication reflect the huge worry many with axSpA faced when the pandemic was a fact in the beginning of 2020 and when there was little information about immunosuppressive medications and the risk of contracting the new virus. Both rheumatologists and patients were in doubt of what to do regarding medications, and this continued for several months.

An American based survey, answered by rheumatologists, was presented at the ACR Convergence congress in November 2020. A third of the respondents indicated that at least 10 % of their patients had self-discontinued or reduced at least one immunosuppressive medication to mitigate their risk of COVID-19. [4]

“In the early months of the COVID-19 pandemic, patients with RA, PsA, AS, and SLE frequently avoided office visits and laboratory testing. (…) Participants often stopped medications without the advice of a physician, and medication interruptions were more common in participants without access to telehealth”, another ACR-abstract reveals. [5]

Knowledge is key

Even some rheumatologists were uncertain if patients should sustain their treatment because there were no recommendations due to the brand-new virus.

“There is considerable uncertainty about the drug management in the context of rheumatic conditions,” EULAR-president professor Dr. Iain B. McInnes explained in a press release in June.

According to another poster session at ACR a national American sample of rheumatologists answered a survey in the period of April to August this year. It revealed there are still variations regarding perceptions of patients’ risk of COVID-19, and how to manage medications such as NSAIDs, biologics and steroids during the pandemic. [6]

After many months and several studies, it is now well established there is currently no evidence to suggest that there are grounds for stopping or slowing down ongoing immunosuppressive therapy, i.e., treatment that suppresses the immune system, including disease-modifying medications (DMARDs) such as methotrexate and TNF-inhibitors. [7] [8]

In hindsight studies show that both the HLA-B27 gene and the use of some biological medications (bDMARD) might in fact be protecting axSpA-patients from contracting the virus and lead to a less difficult course of the disease for those who do become infected. The majority of patients do not require hospitalization, even if they use immunosuppressive drugs.

“It is reasonable that patients with inflammatory diseases treated with b/tsDMARD (biologic, targeted disease modifying anti-rheumatic drugs) continue their treatment during the COVID-19 epidemic. The different rates of hospitalization based on the diagnosis or DMARD may be due to comorbidity, confounding by indication and other bias,” one ACR-abstract concludes. [9]

If you do get infected with COVID-19, standard procedures for other types of infections apply. You should discontinue or postpone the medication until you recover from COVID-19, consistent with guidelines on the management of patients with active infections on biologic therapy. [10]

The SAA’s initial findings from the survey data can be found on the SAA Website

 

[1] https://acrabstracts.org/abstract/disease-activity-in-an-axial-spondyloarthritis-cohort-during-the-covid-19-pandemic/

[2] https://rheum-covid.org/epidemiology-and-outcomes-of-novel-coronavirus-2019-in-patients-with-immune-mediated-inflammatory-diseases/

[3] https://www.eular.org/sysModules/obxContent/files/www.eular.2015/1_42291DEB-50E5-49AE-5726D0FAAA83A7D4/eular_press_release_covid_registry_final.pdf

[4]  https://acrabstracts.org/abstract/geographical-variations-in-covid-19-perceptions-and-patient-management-a-national-survey-of-rheumatologists/

[5] https://acrabstracts.org/abstract/concerns-and-behaviors-of-patients-with-common-autoimmune-rheumatic-diseases-in-the-united-states-early-in-the-covid-19-pandemic/

[6] https://acrabstracts.org/abstract/geographical-variations-in-covid-19-perceptions-and-patient-management-a-national-survey-of-rheumatologists/

[7]  https://diakonhjemmetsykehus.no/nyheter/korona-informasjon-til-pasienter-med-inflammatorisk-revmatisk-sykdom#er-det-spesielle-forholdsregler-hvis-du-far-infusjonspreparater

[8]  https://spondylitis.org/research-new/covid-19-and-spondyloarthritis-your-questions-answered/

[9] https://acrabstracts.org/abstract/use-of-biologic-treatment-and-risk-to-be-admitted-for-covid-19-infection/

[10] https://www.jaad.org/article/S0190-9622(18)33001-9/fulltext

The International Map of Axial Spondyloarthritis (IMAS), a patient experience survey, continues to be a hugely important project for everyone involved in the axSpA community.

The project has produced a wealth of information, which is being used globally to raise awareness, support our advocacy efforts and, ultimately improve the lives of people living with axSpA. The IMAS team have been working hard on disseminating information on the issues identified through the data. They have so far produced a variety of reports and papers on issues ranging from psychological distress; the impact on work and social life; how people manage their disease and, of course, why it takes so long to diagnose axSpA.

Whilst the project was running in Europe (EMAS), 2840 patients from 13 countries completed the survey. We eagerly await the full report of EMAS, which is due to be published early next year.

 

As well as the European countries, the survey has also now closed in Canada, Taiwan and South Korea – with responses from a further 800 patients.

 

And IMAS continues to grow! The survey is currently open in Turkey and four Latin American countries; Mexico, Colombia, Argentina and Costa Rica. We are working hard to maximise the number of people who complete the survey in these countries; and are looking to make sure as many axSpA patients as possible know about IMAS.

 

On top of these countries, IMAS is expanding further into six new countries; USA, Philippines, India, South Africa, Algeria and Lithuania – ensuring that this is truly an international project that delivers robust global data to everyone involved in the fight against axSpA.

 

Patients in these six new countries will be invited to complete the survey from early 2021. IMAS will also be relaunched early next year in the UK, where the aim is to significantly improve on the number of respondents from the first round of the survey.

Alongside the survey itself, the IMAS team continue to work hard on disseminating information gained from the data. Early in 2021, we will invite all the Patient Organisations involved in IMAS to a meeting to discuss how we can best use the data to support their work and what work we can do that will be of most value to ASIF’s members. With this in mind, we are already beginning some IMAS sub-projects; one is to identify the most powerful public affairs messages, so that we can support our members with information and statistics to lobby and approach policymakers. Another project will bring to life some of the IMAS data through patient videos; we will ask patients to talk about their personal experiences of axSpA, viewed through a particular lens – such as how the disease has affected their career or how they coped with their diagnosis.

For more information on IMAS, you can visit the IMAS page on the ASIF website or you can contact Jo Lowe, ASIF Project Manager.

 

 

ASIF’s Delay to Diagnosis project focusses on the unacceptable delay in receiving a diagnosis that most patients with axSpA must endure. Through the project, we aim to better understand why the delay to diagnosis occurs; how this affects patients, their families and friends and healthcare systems. Crucially, we must decide collectively what ASIF can do raise awareness and to support our members globally in tackling this burden that axSpA patients face.

 

The project, which launched early in summer this year, has achieved a lot in a short space of time. Most notably, we hosted two international Global Forum events in the autumn, which were a huge success, and we are very pleased to have received positive feedback from everyone involved. The events brought together patients, researchers, rheumatologists, physiotherapists and other healthcare professionals to discuss the delay to diagnosis around the world. We were delighted to have participants from Argentina to Australia – and many countries in between! In total, we welcomed 48 delegates from 23 countries across five continents. We thank, in particular our Asian and Australian representatives who had to stay up very late!

 

Dr Dale Webb, CEO of NASS (the UK patient group) gave a presentation on the existing research evidence and what it tells us about the delay to diagnosis. Included in this is data from the IMAS project, evidence collected directly from patients about living with axSpA. We held break-out discussions during which we collectively explored the reasons that the delay to diagnosis occurs – almost without exception – around the world. In understanding the reasons for the delay, we can start to identify ways to tackle it. We heard time and again from patients of the suffering they had endured in waiting for their diagnosis. But, we also heard about some positive steps taken in certain parts of the world where small projects or schemes had led to some success in reducing the delay.

Dr Dale Webb presents at the ASIF axSpA Global Forum event on 13 October 2020

We will launch dedicated webpages on the ASIF website very soon, where you can read in more detail about the project and keep up to date with developments. There you will also find resources on the delay to diagnosis, including links to the existing research, videos and infographics that can be tailored to your requirements.

 

During this initial phase of the project, we have also asked our member organisations to tell us more about the delay to diagnosis in their country and have collated and reviewed the existing research. We are now producing our final report from this stage of the Delay to Diagnosis project; this will be the definitive report on the impact of axSpA globally. We will highlight – most importantly – the burden on patients who wait too long for their diagnosis. This burden statement will be launched in spring of 2021 and we will use the knowledge gathered during this phase of the project to agree what work is most needed in the next phases of the Delay to Diagnosis project.

 

Stemming from ideas and discussions at the Global Forums and from existing research, we will explore ideas on how to take forward the project. We could look at how to support our members with better messaging to policymakers; we might develop a toolkit that can be tailored by countries to international or regional campaigns; we could help by making videos about the disease symptoms to raise awareness in the general public and alert people to the possibility that they have axSpA.

 

We will consider a range of ideas and explore how we build a project or programme of work around them. Most importantly, we will consult with our members to find out what would be most useful and how they can get involved in the ongoing project. For now, ASIF would like to say a huge thank you to everyone that has been involved so far and we look forward to continuing this essential work. Together, we can – and must – create a better experience for axSpA patients. 

 

We have heard throughout the Global Forums how many barriers we face in reducing the delay to diagnosis. Here at ASIF, we understand that this project should develop and grow to support our members in tackling these obstacles. We thank you again for your participation and look forward to working with you to achieve our goal.

In the last few months the Trustees have approved applications from 3 different countries and the number of ASIF’S members is now 47!

Welcome to Fondation Enayarthrite Algérie Spondyloarthrites, in Algeria, StandForAS in India and ACE Arthritis Consumer Expert and its JointHealth™ family of programs in Canada. We look forward to working with you.

Recently founded or established large associations we are proud to be able to link all of them as ASIF is an international membership organization representing patient associations around the globe specializing in the support of patients with Axial Spondyloarthritis (axSpA)

 

 

 

 

 

 

 

 

You can take part in critical research on COVID-19 in Axial Spondyloarthritis! We need as many people to take part as possible.

There are too many uncertainties around what effect, if any, having axial spondyloarthritis may have on the pandemic currently encircling us.  Too many uncertainties around the possible impact of medications.

We need to act now; we need to act fast to find concrete answers for our community and we need your help to build a COVID-19 in Axial Spondyloarthritis Registry.

We need your help to track how COVID-19 is impacting our community, and learn more about any possible impact axial Spondyloarthritis, and medications used for spondyloarthritis, may have on COVID-19. Please, take some time now (10-15 minutes) and be a part of this important research.

The Spondylitis Association of America (SAA) in partnership with the Axial Spondyloarthritis International Federation (ASIF) are pleased to invite you to participate in a COVID19 in Axial Spondyloarthritis survey.  SAA has worked closely with members of their Medical and Scientific Advisory Board and is spearheading research into the possible impact axial spondyloarthritis, and medications used for axial spondyloarthritis, may have on COVID-19. 

We have made a good start, but we need more responses, the more responses we have, the better the data. 

• This is the only survey which is specifically researching axSpA. 
• This survey also invites household members to take part to create a control group – so important for data to be scientifically analysed.

Please help us to invite your members to take part in this critical study.

From experience, we know that the way to encourage the best response rate, is to create a unique link to send to each member.  If you would like to use that method.  Please contact Valeria on admin@asif.info and she will let you know what to do next.

If you would prefer, you can simply circulate the link and/or QR code below to your members by email and via social media. 

To take part click here or point your phone camera at this QR code:

Example Social Media posts (more can be found here):

FACEBOOK:

Make your voice heard in the ONLY survey studying the effects of COVID-19 specifically on the #spondylitis community. Close to 4,000 people have already contributed, and we want to hear from you, too! It only takes 10-15 minutes, and your input will help researchers find critical answers for our community. Begin the survey here: PS: You do NOT have to have contracted COVID-19 to take part.

TWITTER:

Make your voice heard in the ONLY survey studying effects of #COVID19 on the SpA community. Close to 4,000 people have contributed. We want to hear from you! You DON’T have to have COVID-19 to take part. Your input is vital! https://tinyurl.com/spasu

Some details:

Who is eligible to take part?

• We are currently looking for those with a diagnosis of spondyloarthritis made by a physician (those with ankylosing spondylitis, non-radiographic axial spondyloarthritis, psoriatic arthritis, arthritis with inflammatory bowel disease, peripheral spondyloarthritis, undifferentiated spondyloarthritis, reactive arthritis, or juvenile spondyloarthritis.)

• You can also refer your household members (to act as a control group for the survey.)

• This survey is open to people throughout the world, and we urge everyone who is eligible to take part.

What is my time commitment should I decide to take part?

• The initial time commitment is an estimated 10-15 minutes for the current survey. Four weeks after you complete this first survey, you will be asked to complete a follow up survey. We will continue to ask for your permission to contact you again every four weeks, for the next six months. You can, of course, opt out at any time.

Who are the professionals guiding this research?

• This survey has been developed and is being managed by a dream team of passionate and committed investigators, including patients and renowned researchers, such as Dr. James Rosenbaum, Dr. John Reveille, Dr. Kevin Winthrop, and Dr. Michael Weisman. All are experts in the area of rheumatology or infectious diseases.
• We extend our deep thanks to any-3 Ltd for providing their technical expertise and support, and addressing with great care and professionalism our needs, and those of our community.