A staggering 3.2 million Americans navigate their daily lives with spondyloarthritis (SpA), a number that far surpasses those diagnosed with ALS, multiple sclerosis, and rheumatoid arthritis combined. Yet this often-considered invisible rheumatic disease remains relatively unknown by the vast majority of the public, and large segments of its community are misdiagnosed or dismissed as “just back pain” sufferers.
The Spondylitis Association of America (SAA) has endeavored for more than four decades to tear down this wall of ignorance, armed with a dedicated staff, board, and an army of patients-turned-advocates.
Understanding Spondyloarthritis
Nearly 1 in 100 Americans have spondyloarthritis, yet 54% of patients remain undiagnosed for at least five years. This inflammatory condition primarily affects the spine and sacroiliac joints, causing chronic pain, stiffness, and in some cases, permanent kyphotic spinal fusion. The typical age of onset falls between 17 and 45, making it the most overlooked cause of persistent back pain in young adults.
“We are focusing on measurably increasing concern annually in the general population about SpA as a critical public health and chronic pain issue,” says Jason Blackwell, the director of brand experience and public affairs at SAA. “Early diagnosis and treatment lead to better health outcomes.”
From Diagnosis to Daily Management
The economic impact of spondyloarthritis continues to grow. The journey with spondyloarthritis often forces major life changes, with one in four patients having to change careers due to their condition. A quarter have seen five or more health professionals searching for a diagnosis.
A research study also indicated that patients with ankylosing spondylitis had approximately tenfold higher median total healthcare costs than their counterparts, largely driven by increased outpatient and pharmacy costs. SAA stands in the trenches and bridges these gaps through comprehensive education, advocacy, awareness, and support programs.
SAA’s website provides an extensive hub of resources for newly diagnosed patients, those seeking diagnosis, and individuals managing long-term symptoms. Their quarterly magazine, Spondylitis Plus, stands as the only publication in the United States dedicated entirely to spondyloarthritis. Through virtual and in-person support opportunities, patients connect with others who understand their struggles, forming communities that combat isolation.
The significance of this work cannot be overstated when considering the organization’s tailored approach to delivering the education, resources, and support those living with SpA need wherever they are on their journey with the disease.
Blackwell emphasizes SAA’s commitment to accessible resources: “SAA offers high-quality, physician-vetted patient educational materials and information on spondyloarthritis, free of charge. We know that educating the SpA community on their condition, discussing treatment options and their benefits, as well as offering support and encouragement, improves disease outcomes.”
Driving Change: Research, Advocacy, and Awareness Campaigns
Addressing a significant funding gap compared to other diseases, SAA has funded more than $6.7 million for research initiatives, which include direct grants to researchers, Early Career Investigator Awards, Life Impact Surveys, Unmet Research Needs Conferences, and diagnostic tools. Their research areas include environmental factors, genetic components like the HLA-B27 gene, and improved diagnostic techniques using MRI. The organization also launched and managed a patient registry during the pandemic and continuously connects researchers with participants through a dedicated research portal.
The advocacy arm of SAA works to promote earlier diagnosis, improve access to treatment, increase federal funding for research, and impact public policy. This multipronged strategy addresses both immediate patient needs and long-term systemic changes.
The upcoming 7th Annual Global Spondyloarthritis Summit, scheduled for May 2-3, 2025, will bring together experts and patients virtually to discuss advances in understanding and treatment. This free event coincides with World AS Day on May 3, creating momentum for awareness activities throughout the month. Other ongoing initiatives include “Walk Your AS Off”, a virtual walk encouraging physical activity adapted to individual capabilities, and their recent release of “Healthy Living with AxSpA,” a cooking demonstration featuring anti-inflammatory recipes.
The organization’s commitment extends to youth as well. With 75 percent of children with juvenile spondyloarthritis (JSpA) experiencing moderate to severe pain, SAA maintains a dedicated portion of their website, specifically to JSpA, providing age-appropriate information, resources and support to impacted youth and their families.
The global axial spondyloarthritis market is projected to reach $10.1 billion by 2032 with North America expected to capture a significant share due to rising prevalence, increased awareness, and improved diagnostic capabilities. However, funding remains a perpetual challenge for this dedicated organization that has been the leading nonprofit for the SpA community since 1983.
SAA receives no government funding, relying instead on individual donations, family foundations, and corporate partners. Despite these limitations, their impact continues to grow, guided by a clear vision of a world where spondyloarthritis is widely recognized, properly diagnosed, effectively treated, and no one living with the disease has to face it alone.
For the millions living with spondyloarthritis, SAA represents not just an information source but a powerful ally in their daily battle with chronic pain and systemic barriers. Their work reminds us that behind every statistic stands a human story, stories that deserve to be heard, understood, and acted upon with compassion and urgency — and a strong community.
To connect with the Spondylitis Association of America, visit their website.
