POS0301-PARE BRIDGING HORIZONS AND HARMONIZING HOPE: ASWS’S COMMITMENT TO OVERCOME ANKYLOSING SPONDYLITIS CHALLENGES IN INDIA
Authors: B. Ghate, P. Bhosle
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Ankylosing Spondylitis Welfare Society (ASWS) is committed to improving the lives of individuals as they navigate through the challenges posed by Axial Spondyloarthritis. Founded in 2020, by passionate warriors, led by esteemed rheumatologist Dr. Pravin Patil, ASWS operates as a patient-focused, registered charity organization, directly engaging with thousands of axSpA patients across India. <h3>Objectives:</h3> This abstract aims to outline the challenges faced by axSpA patients in India, highlighting ASWS's proactive strategies in raising awareness, providing support, and empowering the Indian axSpA community. <h3>Methods:</h3> India's diverse and multi-lingual fabric, coupled with varied socio-economic setups, presents a spectrum of challenges. Implementing a uniform approach is hindered in this heterogeneous landscape due to multifaceted obstacles axSpA patients encounter. In India, delayed diagnoses of ankylosing spondylitis stem from inadequate awareness about the condition and poorly established medical referral routes. This delays timely intervention and hampers effective management of axSpA. ASWS utilizes diverse strategies like webinars, expert Q&amp;A sessions, rallies, and seminars to educate about axSpA symptoms, highlight early detection, and effectively dispel misconceptions. axSpA patients in India grapple with significant challenges stemming from socio-economic barriers like financial constraints and limited access to specialized medical care, particularly in rural areas. These obstacles often result in the inability to afford crucial medications, disrupting consistent adherence to treatment plans. ASWS has a pivotal role in addressing these issues. Our efforts focus on working towards providing affordable medication and biologics to disadvantaged groups, ensuring equitable access to essential healthcare. ASWS actively lobbies for policy changes aimed at enhancing specialized care accessibility and advocating for inclusive insurance policies and health schemes. Additionally, the organization empowers axSpA patients by offering job-related information, aiming to bolster their socio-economic independence amidst these challenges. The societal stigma and misconceptions surrounding axSpA profoundly impact patients' lives, influencing critical decisions like marriage and careers, and leading to discrimination, affecting social integration. The emotional toll is immense, causing feelings of dependence, anxiety, and depression. Unclear initial medical tests foster self-doubt and distress for patients and their families. ASWS addresses these challenges by establishing regional support groups for local axSpA warriors, creating safe spaces for patients and caregivers to share experiences and resources. ASWS offers crucial emotional support and provides 24/7 direct interaction for warriors to share concerns. ASWS also assists caregivers in navigating this challenging journey alongside patients. <h3>Results:</h3> ASWS has made a remarkable impact since its establishment, aiding thousands of patients and caregivers through personalized interactions, addressing doubts and concerns about this often-unseen disease. Our initiatives include supporting crowdfunding efforts to financially assist axSpA Warriors, forming volunteer groups that contribute monthly to provide essential medications, and collaborating with other rheumatic organizations. This collaborative effort aims to create a collective voice, spreading awareness and solidarity within the rheumatic community. Our primary future goal is to advance research in axSpA, prioritizing patient perspectives and welfare. We aim to bolster scientific credibility and address the genuine needs of the patients. <h3>Conclusion:</h3> ASWS, led by committed axSpA warriors, under the guidance of Dr. Pravin Patil aims to transform the Indian axSpA community through awareness, support, and empowerment for improved outcomes and a better quality of life. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Acknowledgements:</h3> Indian AS Patient Community, ASWS Trustee Members, Dr. Pravin Patil. <h3>Disclosure of Interests:</h3> Bhushan Ghate ASWS has conducted patient education webinars and seminars with the help of various pharmaceutical companies., Prachee Bhosle Was a member of Health Advocacy Council of a pharmaceutical company in 2022., ASWS has conducted patient education webinars and seminars with the help of various pharmaceutical companies.