Lobbying For Arthritis

Scott and Jill Hutslar of Jasper will be among a record number of Arthritis Foundation advocates to converge on Capitol Hill February 25-27 to urge Congress to pass the Arthritis Prevention, Control and Cure Act (S.626/H.R. 1283). It is the first comprehensive federal response to the burden of arthritis in more than 30 years. Arthritis affects 46 million Americans nationwide, including 300,000 children. The Hutslars 12-year old daughter Kendra was diagnosed with juvenile rheumatoid arthritis when she was 18 months old. She is a sixth grader at Jasper Middle School. "This trip is important to us because its important for people, especially lawmakers, to know what these kids go through," Jill Hutslar says. "Its not just the pain that these kids have to suffer with daily. Its all of the other stuff that comes with it that really impacts their lives and their families lives." The Hutslars wont be alone. More than a dozen Indiana advocates will join them for scheduled meetings with Senators Richard Lugar and Evan Bayh and Representatives Dan Burton and Steven Buyer. The legislation comes at a critical time, with the staggering prevalence of arthritis continuing to rise due to the aging baby boomer population. In addition to the pain and suffering caused by the disease, arthritis also exacts a hefty financial toll. In 2003 (the most recent statistics available from the Centers for Disease Control and Prevention), arthritis costs to the U.S. economy reached an unfathomable $128 billion. Currently, National Institutes of Health funding amounts to less than $8 per person with arthritis. Funding for arthritis research has steadily declined since 2003, despite the year-over-year increases in people diagnosed with arthritis. At the same time, federal appropriations for the public health efforts to help prevent arthritis and further disability have leveled off. "Its simply unacceptable that so little federal money is spent on a disease that seriously affects so many people," says Ed Wills, president and CEO of the Indiana Chapter of the Arthritis Foundation. "Like other advocates here for the Summit, I will be taking our case directly to the nations highest lawmakers. Its time our voices be heard and action be taken," he said. The Arthritis Prevention, Control and Cure Act expands the federal governments efforts to prevent, treat and find a cure for arthritis. The legislation focuses on three primary areas: B7 B7Investing in a nationwide public health initiative designed to reduce the pain and disability of arthritis through early diagnosis and effective treatment of the disease. B7 Ensuring the 300,000 children with arthritis in the U.S. have access to care by addressing the nationwide shortage of pediatric rheumatologists (many states do not have a single pediatric rheumatologist to provide care to children in need). B7 Improving coordination among federal agencies and the public with regard to the federal investment in arthritis research and public health activities through the formation of an Arthritis Interagency Coordinating Committee.