Join the Global Alliance for Patient Access (GAfPA) and ASIF’s for a webinar highlighting the value of pursuing remission in rheumatic and musculoskeletal diseases.
ASIF Trustees Nadia Malliou and Lillann Wermskog, and Jo Lowe, Project Manager at ASIF, will be talking to Neil Betteridge, Strategic Advisor for European Alliance for Patient Access, about axSpA, an overview of the disease, an introduction to ASIF and IMAS data and the value of achieving remission or low disease activity from a personal perspective as a patient.
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.
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.
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.
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.
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.
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.
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.
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.
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.
It is with great enthusiasm that we inform you that after the CEADE General Assembly held in Cordoba on June 29th 2024, it was agreed that a new Board of Directors would assume the responsibility of the organisation.
Marco Garrido, who already served on the Executive Board as liaison with ASIF, has been elected as the new President, accompanied by an experienced team of patient representatives.
Marco has extensive experience in axSpA research, being responsible for the REUMAVID study, the Atlas of Axial Spondyloarthritis in Spain, the European Map of Axial Spondyloarthritis (EMAS) and the International Map of Axial Spondyloarthritis (IMAS), collaborating with rheumatologists from ASAS, several scientific societies in Rheumatology and patient representative members of ASIF, and rheumatologists and entities from more than 25 countries.
Marco has extensive experience in axSpA research, being responsible for the REUMAVID study, the Atlas of Axial Spondyloarthritis in Spain, the European Map of Axial Spondyloarthritis (EMAS) and the International Map of Axial Spondyloarthritis (IMAS), collaborating with rheumatologists from ASAS, several scientific societies in Rheumatology and patient representative members of ASIF, and rheumatologists and entities from more than 25 countries.
We thank Pedro Plazuelo Ramos for his great dedication and hard wor.k during the last 12 years as President of CEADE. His legacy has been fundamental for the positioning and credibility of the organisation.
ASIF would like to congratulation Marco and thank Pedro for his commitment to improving the lives of people living with axSpA. Marco is an invaluable supporter of ASIF and collaborator on IMAS.
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.
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.
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.”
