2013 Advocacy Summit: Making Arthritis A National Priority

  • “If we don’t speak up for our disease, who’s going to speak up for us?”


    Renay Hole of Rhode Island is one of three hundred Ambassadors and Advocates from all fifty states attending this week’s Arthritis Foundation Advocacy Summit in Washington DC.


    Renay has lived with rheumatoid arthritis (RA) since 1976, back in the days where the disease was treated with aspirin and bed rest. Over the years, she has had twenty-one surgeries for RA. She has been involved with the Foundation for 25 years and is one of its high-level Ambassadors. She's at the Advocacy Summit for the third year in a row meeting with Senators and Congress in an effort to make arthritis a national priority.

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    Summit Activities

    The goal of the 2013 Advocacy Summit is to "let Congress and the administration know that ignoring arthritis is unacceptable," says Amy Melnick, VP of Advocacy with The Arthritis Foundation. The Advocates and Ambassadors are in Washington to "raise awareness about the pain, cost and disability associated with arthritis." She explains that during the Summit "each Senator will be hearing about the devastating impact of arthritis. We’ll be asking Senators and members of the House for three specific areas of support."


    The first priority is to reintroduce the Patients’ Access to Treatments Act. This is a bipartisan piece of legislation introduced to limit" special tiers" for Biologics in commercial health insurance plans. These specialty tiers mean that "instead of paying a flat-rate co-pay for the biologic that’s helping you stay out of a wheelchair, you're being asked to pay a co-insurance," Melnick explains. This Act is cosponsored by Reps. McKinley (R-WV0 and Capps (D-CA), and so far has approximately 20 other co-sponsored. The Summit aims to increase the number of sponsors in Congress and to find a lead sponsor in the Senate.


    The Summit is seeking support for five million dollars for the Pediatric Subspecialty Loan Repayment Program. Pediatric rheumatology is "one of the lowest-paying specialties in all of medicine," Melnick says. This has resulted in a dire situation for the more than 300,000 children who live with juvenile arthritis. A delay in diagnosis can lead to deformity and disability an early age. Eleven states do not have even one single board-certified pediatric rheumatologist and seven states have only one. Offering partial assistance with medical school loan repayment will be an incentive for more doctors to go into pediatric rheumatology. This can mean a huge difference in the lives of thousands of children with juvenile arthritis.


    The third priority of this year's Advocacy Summit is to get support for including research into RA and posttraumatic osteoarthritis in the Department of Defense. Melnick explains that "there are incredibly compelling statistics showing that veterans have twice the rate of osteoarthritis as their civilian counterparts. Osteoarthritis caused by battlefield injuries is the #1 primary source of disability for those injured on the battlefield."


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    Renay Hole is committed to continuing to work as a Ambassador for The Arthritis Foundation. She has experienced firsthand the difference made by committing money to research and programs. Research led to the development of new medications for RA and these drugs have "allowed me to come off disability, to work and function," Renay says. Still, with arthritis being the leading course of disability in the US, costing billions of dollars, "we have a long way to go."


    Visit The Arthritis Foundation website to learn more about their advocacy efforts. If you want to become an Advocate or Ambassador for the Foundation, find out more in their Advocate Toolkit and in the Ambassador area on the website.



    Lene is the author of the new book Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain.



Published On: March 06, 2013