Washington, DC—In late January 2017, experts congregated on Capitol Hill on behalf of the American College of Rheumatology (ACR) and the Arthritis Foundation to hold a congressional briefing titled Arthritis 101, according to a press statement by the ACR. The purpose of the briefing was to inform new and returning leaders in Congress about arthritis and the impact the disease has on Americans and the US healthcare system.
Arthritis is the primary cause of disability in the United States, and has been diagnosed in more than 52 million Americans. Healthcare costs for this condition are approximately $128 billion annually in the United States.
“Millions of Americans living with arthritis and other rheumatic diseases face enormous obstacles when trying to access safe, effective and affordable health care. Now more than ever, we need practical solutions to expand access to care and improve the quality of life for people living with arthritis. We look forward to working with new and returning members of Congress to address some of these cost and access challenges,” said Angus B. Worthing, MD, FACP, FACR, Chair, Government Affairs Committee, ACR, Atlanta, GA, in the press release.
Arthritis 101 was moderated by Tim Hutchinson, former US senator from Arkansas, and co-sponsored by Anna Eshoo and David McKinley, co-chair representatives from the Congressional Arthritis Caucus. Panelists at the event included Shannon O’Hara-Levi, an advocate for the Arthritis Foundation, NY; Cavan M. Redmond, Independent Director, OncoCyte Corporation, and Arthritis Foundation board member, Alameda, CA; and Colin C. Edgerton, MD, Rheumatologist, Low Country Rheumatology, and a member of ACR’s Committee on Rheumatologic Care, North Charleston, SC.
These panelists and others offered congressional leaders insight into the general concept of arthritis, some of the healthcare-related challenges Americans are currently facing, and possible policy solutions.Access to Care and Drugs for Disease Management
The rheumatology workforce shortage was an additional talking point, and included discussions on the increasing shortage of rheumatologists for pediatric patients and the challenges surrounding access to care. Ms O’Hara-Levi, herself a patient with juvenile rheumatoid arthritis, spoke to attendees about her personal experiences with travel challenges and delays in care brought on by the lack of pediatric specialists in New York, where she is based.
“I’ve never known life without juvenile rheumatoid arthritis...but remain hopeful for a cure. Upon my diagnosis at age three, my family was told that I’d be wheelchair bound by age six, which thankfully didn’t happen. While I’ve never experienced remission from my disease, I am grateful [for] where I am in my life, how I’ve gotten here and [to] all of those involved with keeping me healthy and on my feet,” Ms O’Hara-Levi told listeners.
In addition to challenges associated with the availability of rheumatology specialists, patients have trouble accessing disease management drugs at an affordable cost.
“People with arthritis live in fear of losing access to their prescription drugs and have to fight tirelessly to keep access to the drugs they need to keep their disease under control. To begin chipping away at this problem and better understand the ‘great health care disconnect’ between patients, policy-makers and health care industry leaders, we sat down with health care leaders across the industry and then met one-on-one with patients, in focus groups to understand their challenges,” said Mr Redmond.
“Based on our findings, we launched an initiative—called Prescription for Access—to actively address the concerns of people with arthritis, including providing policy recommendations and principles for the new Congress to consider,” he continued.
Dr Edgerton, a former army physician, was just one of the panelists who spoke out about the need for a self-standing arthritis medical research program at the, Department of Defense.
“Arthritis disproportionately affects U.S. service members and veterans, yet unlike other diseases related to military service, there is no dedicated research budget at the Department of Defense to explore arthritis prevention strategies, treatments and cures. We have an opportunity—and, in my view, an obligation—to ensure the healthcare needs of service members living with arthritis are met. Our Congressional leaders can help us achieve this goal by supporting the appropriation of $20 million in existing funding for the creation of a stand-alone arthritis research program within the Department of Defense,” Dr Edgerton told attendees.