Filipinos living with axial spondyloarthritis (axSpA) are invited to share their unique personal insights and challenges in coping with the debilitating disease by participating in the International Map of Axial Spondyloarthritis (IMAS) online patient experience survey.
axSpA is a chronic inflammatory disease that primarily affects the spine and sacroiliac joints that connect the spine to the pelvis. Symptoms typically manifest as chronic inflammatory back pain, stiffness and fatigue of the pelvis and lower back – although all regions of the body can be affected. axSpA occurs in approximately 1% of the general population and can affect both men and women, with patients typically being in their twenties when they first develop symptoms.
“We call on all Filipinos living with axSpA to let their voice be heard and speak their truth through the IMAS online survey. Your insights will add to the growing body of information that the survey has amassed, which is being used globally to raise awareness, support our advocacy efforts, and ultimately improve the lives of people living with axSpA,” said Engr. Clark Ferrer, President of the Axial Spondyloarthritis Association of the Philippines (ASAP).
“IMAS continues to produce vital information that can help address gaps in diagnosis, treatment and work support for people living with axSpA ,” added Dr. Juan Javier Lichauco, President of the Philippine Rheumatology Association (PRA). We strongly encourage Filipinos living with axSpA to participate in this important global survey and help increase awareness on axSpA and enhance its diagnosis and management.”
“Among the key findings of the IMAS survey is that people living with axSpA suffer a delay in diagnosis of over 7 years. By participating in the survey, Filipino patients living axSpA can provide insights that can help address this diagnostic delay and shed light on country-specific issues that impact diagnosis and treatment ,” said Dr. Heizel Manapat-Reyes, principal IMAS investigator in the Philippines and PRA Past President.
“Together with our partners ASAPH and PRA, we call on Filipinos living with axSpA to share their unique patient experience in the IMAS global online survey. By supporting IMAS, the partnership of Novartis with healthcare providers and the patient group aim to help ensure that the axSpA patient perspective is integrated into clinical decision-making to improve the quality of life and wellbeing of people with axSpA around the world,” said Mr. Jugo Tsumura, President and Managing Director of Novartis Healthcare Philippines, Inc.
Launched in June 2019 by the Axial Spondyloarthritis International Federation (ASIF) in partnership with Novartis, IMAS brings together patients, patient organizations, clinicians and researchers from around the world to address the questions that matter most to patients. By generating and disseminating evidence about how people with axSpA experience their disease physically, psychologically and socially, IMAS aims to raise the voice of the axSpA community, ensuring patients around the world are empowered to live happy and well.
To date, IMAS has received inputs from over 4,000 respondents from 13 countries in Europe. The survey is currently being expanded. The next phase will include results from additional countries in Europe, North America, Latin America and Asia Pacific. 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. The survey is currently open in Turkey and four Latin American countries; Mexico, Colombia, Argentina and Costa Rica. IMAS is expanding further into six new countries: USA, Philippines, India, South Africa, Algeria and Lithuania.
Visit the Axial Spondyloarthritis Association of the Philippines Facebook page (https://www.facebook.com/asaph.org) to learn more about the IMAS Survey and how you can participate.