Spondylitis Association of America shines a light on 'critical public health issue'
Patients with complex, but not well-known diseases often find themselves at a loss for two important things: A voice and access to reliable information about their condition. Interestingly, the physicians who treat these patients often feel the same way.
In an effort to bridge this gulf, the Spondylitis Association of America (SAA) provides a hub for communication and connection between patients, providers and researchers who are involved, one way or another, with spondyloarthritis.
Jason Blackwell, director of brand experience and public affairs for SAA, discussed some of its core programs, including in-person and live-streamed educational seminars to help both physicians and patients stay up to date with advances in research and treatment.
“We hold our Global SpA Summit and a series of webinars each year,” he said. “We publish a wide range of SpA educational materials, including patient brochures, books, and the only magazine in the United States dedicated to spondyloarthritis, featuring articles by rheumatologists, researchers, and other specialists such as physical therapists, psychologists, and nutritionists. There are also articles written by individuals living with SpA.”
SAA’s website spondylitis.org provides comprehensive information and resources for people living with SpA and its family of related diseases. The organization also hosts a supplemental website, spondykids.org, that is dedicated to children and teens living with juvenile SpA.
“The Spondylitis Association of America also provides a space for those living with SpA to come together and offer support and understanding online, through our virtual support opportunities,” Blackwell said.
Another signature component of the organization is “Back in Action Again,” an exercise program specifically geared to those living with SpA. “It is led by physical therapists and a yoga instructor with special expertise in SpA,” Blackwell said.
SAA also facilitates physician outreach by working to increase awareness of SpA among health care providers. “The mission here is to reduce the delay in SpA diagnosis,” Blackwell said.
Addressing Unmet Needs
“As a nonprofit organization that has served the spondyloarthritis community for more than 35 years, there are many accomplishments to celebrate,” Blackwell said. “When SAA was founded in 1983, there was no support network, no educational materials geared to the patient, not even a single pamphlet for people affected by spondylitis, whether they were newly diagnosed or had lived with the condition for decades.”
Today, SAA provides one of the most comprehensive libraries of resources and information for people affected by the disease, according to Blackwell. “SAA also sponsored and developed the first extensive survey among axial spondyloarthritis patients nationwide,” he said.
The Axial Spondyloarthritis Life Impact Survey provided the research community with data that had not previously been documented. It enabled physicians and SAA to better address the needs of the spondylitis community.
“In addition, SAA has co-sponsored three Spondyloarthritis Unmet Needs Conferences to bring together experts in several different scientific areas to foster multidisciplinary approaches to the classification, pathogenesis and management of AS and its related diseases,” Blackwell added.
To date, SAA has provided nearly $1 million to fund SpA research. “Compared to other diseases, research for spondyloarthritis is woefully underfunded,” Blackwell said. “Since its inception, SAA has been committed to research, from funding scientific meetings to launching the first genetic research study in the United States on ankylosing spondylitis and related diseases.”
The support that the Spondylitis Association of America provides is ongoing. “As an early leader in the quest for a cure, SAA has funded a patient registry, studies on the microbiome in spondyloarthritis, life impact studies and CME programs,” Blackwell said.
One signature program is an initiative in MRI to help radiologists and rheumatologists work together to hasten diagnosis. Other research initiatives include those looking at environmental factors that may contribute to the disease; whether fungus or yeast may contribute to spondyloarthritis; and the role of genetics in disease susceptibility and severity, such as the HLA-B27 gene.
SAA also manages a patient registry, and visitors to the website can review the official ACR/SAA/SPARTAN treatment guidelines and recommendations for axial spondyloarthritis, along with the accompanying patient-friendly adaptation, developed by SAA in collaboration with patients and physicians.
SAA recognizes that the spondylitis community has also felt the impact of dwindling numbers of researchers focused on this particular condition. “There are far too few researchers concentrating on spondyloarthritis,” Blackwell said. “SAA is guaranteeing the future of spondyloarthritis research through the innovative SAA/Bruckel Early Career Investigator Award that encourages new, upcoming rheumatologists to focus on the future of treatment and research in ankylosing spondylitis and related diseases.”
Understanding that conducting clinical trials in complex, but not well-known diseases like SpA is rife with obstacles, SAA also connects researchers with participants through the research portal.
Speaking to Rheumatologists
Blackwell hoped to reach Healio Rheumatology readers who may be interested not only in participating, but in helping their patients deal with the disease outside of the confines of a brief visit to the clinic. “SAA offers high-quality, physician-vetted patient educational materials and information on spondyloarthritis, free of charge,” he said. “We know that educating the patient on their condition, discussing treatment options and their benefits, as well as offering support and encouragement, improve disease outcomes.”
In striving to dispel misinformation, SAA provides medically accurate brochures for physicians to share with their patients, a plethora of educational resources on its website, access to educational support groups and invitations to patient seminars and webinars.
Blackwell spoke to the benefits of membership in the organization. “Members will receive four issues of our publication, Spondylitis Plus, the only advertising-free news magazine in the country devoted to spondylitis,” he said. “In addition, members receive discounts on educational publications and awareness products, as well as access to other exclusive materials to help all those in the Spondylitis Community navigate the world of spondylitis.”
“We are focusing on increasing the momentum of the SpA disease movement by measurably increasing concern annually in the general population about SpA as a critical public health and chronic pain issue,” Blackwell said. “Our hope is to double awareness of SAA among our stakeholder’s audience.”
Advocacy is also consistently on the agenda for SAA. “Our goal is to increase our number of advocates and continue to engage them in the cause,” Blackwell said.
The advocacy efforts dovetail with the other goals of the organization. In addition to promoting earlier diagnosis and treatment of spondylitis, the advocacy arm of SAA hopes to promote public awareness of the disease, improve access for patients, increase federal funding for research, and impact public policy.
Accelerating research is another piece of the puzzle, according to Blackwell. “We will continue to encourage more young career investigators to enter the field,” he said.
Of course, these efforts require resources. “SAA receives no government funding,” he said. “The majority of our operating revenue comes from individuals and family foundations in the form of membership gifts. With that in mind, we are hoping to continue to increase our revenue to support the mission.”
- Spondylitis Association of America: https://www.spondylitis.org/
- Research portal: https://www.spondylitis.org/About-SAA/Research/Participate-in-Research.