Our Advocates had a banner year in 2013! Thanks to the hard work and dedication of our advocates, we were able to have a highly successful year in 2013.
2013 Advocacy News & Letters
Arthritis Foundation CEO Ann M. Palmer sent a letter to Express Scripts concerning access to certain drugs for arthritis patients. The Arthritis Foundation is committed to ensuring that patients receive medically important drugs that could be successful in treating and managing their inflammatory arthritis. Please click here to read the letter.
Three weeks ago, advocates were sent an email requesting them to email Marilyn Tavenner, the administrator of the Centers for Medicare and Medicaid. In some states Medicare carriers were making critical biologic drugs impossible for patients to access. Following that outreach, CMS directed the carriers to stop refusing infusions and start putting patients first. Several contractors have already made the changes to their policies reinstating coverage for these biologic therapies. The Arthritis Foundation, in coordination with the American College of Rheumatology, will continue working with the regional contractors to ensure the patient-provider relationship remains a priority.
Ms. Tavenner responded because nearly 2,500 Arthritis Advocates took action. Amidst a government shutdown, Ms. Tavenner took the time to stand up for patients living with arthritis.
The Arthritis Foundation is an active member of the MapRx Coalition and they have released this document, which addresses many common questions Medicare beneficiaries may have when signing up for Medicare Part D. This document will guide you through the upcoming changes and answer your questions on what you need to know. All Medicare Part D plans are changing and taking the time to review the document and compare plans will help you find the plan that best meets your needs.
The Public Health Policy and Advocacy Team celebrated World Arthritis Day by hand-delivering squishy snowman stress relievers to 541 legislators and their staff. The team also invited legislators to attend a local Jingle Bell Run / Walk. The message that arthritis impacts everyone, regardless of political party, was well received!
The Arthritis Foundation recently convened its fifth Arthritis Industry Forum in Washington, D.C. that brought together 48 industry stakeholders who represented 19 organizations. This year’s event was moderated by Jamie Glonek, Senior Director of US government relations at Pfizer and chair of the Arthritis Industry Forum. The 2013 industry members included representatives from pharmaceutical, biotech and device companies as well as arthritis advocates who shared their personal stories of how they live with arthritis.
Held each year in October, the Arthritis Industry Forum provides a rare opportunity for unfiltered discussions among stakeholders who examine ideas on how industry and the Foundation can collaborate and advance legislative policy in Washington that focuses on the prevention, control and cure of arthritis. This year’s topics included the health insurance marketplace, ways by which patient health data can grow and impact health care and how the Arthritis Industry Forum can work collectively to advance medicine.
The Public Health Policy and Advocacy Department is pleased to announce Amy Barron, of Cincinnati, Ohio, as this year’s Edward M. Kennedy Advocacy Leadership Award winner. The Edward M. Kennedy Advocacy Leadership award is given to a person who has demonstrated advocacy leadership at local Arthritis Foundation events, builds relationships with state and / or federal legislators, and effectively, passionately works to raise awareness about arthritis and the Arthritis Foundation’s advocacy priorities.
Amy has spent countless hours building relationships with her Members of Congress. She has also served as a patient reviewer for the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense and for the Patient Centered Outcomes Research Institute (PCORI). Amy currently serves as the National Walk Mission Chair, bringing National and Local walk committees training and resources to ensure the mission of the Arthritis Foundation remains center-stage at all Arthritis Walks. She is also an active Arthritis Ambassador. Her numerous accomplishments are much to be celebrated and we thank her for all she has done for the Foundation.
The Emerging Leader in Advocacy Award is given to a young individual who has demonstrated public service and advocacy on behalf of those impacted with arthritis in their community. The Emerging Leader in Advocacy Award winner is Katherine Herrmann of Harrison, Ohio. Katherine has spent time recruiting e-advocates at local walks and events, becoming the “Face of Arthritis” for Cincinnati Children’s Hospital, and building relationships with her local Members of Congress. Her dedication to advocacy truly makes Katherine a leader and we thank her for her service.
Congratulations to our two winners!
On September 19th, The Coalition for Accessible Treatments held a Congressional briefing in the Senate releasing the results of a new impact study to gain support for the Patients’ Access to Treatments Act. The study can be found here. Patience White, MD, MA, Vice President of Public Health Policy and Advocacy at the Arthritis Foundation, spoke of the challenges that physicians and patients face by the high cost of essential medications. Millions of Americans with chronic, disabling, life-threatening diseases rely on specialty tier drugs and this bill will assist in lowering the cost, making the medications more accessible. Linda Landa, an advocate for the Crohn’s and Colitis Foundation of America spoke about her young son Jacob and how biologics are essential for him to have mobility and be an active teenager. Without the drugs, her son would be unable to attend school with his classmates or pursue his passion of snowboarding. The Senate needs a bill sponsor in order to push this critical legislation forward. To contact your Senator on this important issue, please visit http://www.senate.gov/. Learn more about the Patients’ Access to Treatments Act.
Performing simple tasks with a rheumatic disease can be impossible. Paying for treatment shouldn’t be. Rheumatic diseases affect over 11 million Americans of all ages. For many, access to specific medication is the only way to prevent disability and ensure quality of life. These life-saving treatments are increasingly being moved to a more expensive ‘Fourth Tier,’ that can add between $12,000 and $48,000 in out of pocket costs to each patient’s treatment every year.
Supporting the Patients' Access to Treatments Act (H.R. 460) will enable access to critical treatments that allow patients to lead a normal life and prevent disability.
A new study shows H.R. 460 would have a negligible impact on insurance premiums.
Congressman Mike Doyle (D-PA) has made a video in support of Arthritis Foundation policy initiatives. See below for the video:
The Washington Post article quotes the Arthritis Foundation’s Dr. White, where she raises awareness about osteoarthritis and what measures can be taken to help manage it and perhaps control it or stop its progression. She notes that weight management and exercise are crucial in accomplishing this, and she also highlights how even small weight loss can produce dramatic results by reducing overall pressure on one’s joints.
Runners are not giving themselves arthritis
By Christie Aschwanden, Published: August 12, The Washington Post
While out on a run recently, I passed a hiker on the trail. “My knees hurt just watching you,” he told me, shaking his head. It was a variation on a comment I hear over and over: Keep running like that, and you’ll give yourself arthritic knees.
The notion that running causes wear and tear on the joints that could spur arthritis makes some intuitive sense. But is it true?
No — if anything, running probably offers protection from osteoarthritis, says Paul Williams, an exercise scientist at Lawrence Berkeley National Laboratory who leads the National Runners’ Health Study and the National Walkers’ Health Study. These projects have enlisted almost 90,000 runners and walkers and followed them since the studies began, in 1991 and 1997, respectively. In an analysis recently published in the journal Medicine & Science in Sports & Exercise, Williams calculated rates of osteoarthritis and hip replacement among participants in his studies and found that runners were approximately half as likely as walkers to develop osteoarthritis or need a hip replacement. Furthermore, runners who ran the most had the lowest risk of osteoarthritis.
“There’s a perception out there that somehow you’re wearing out your joints if you’re out there running,” Williams says, but the thousands of runners in his study show this just isn’t so. “I’ve recruited people who were doing 60 or 70 miles per week, and we’ve followed them over time,” he says. “If there had been an effect, we would have seen it.”
The notion that running causes osteoarthritis arises from a misperception about how joints work, says Alex Hutchinson, a science journalist who is author of the Sweat Science blog at Runner’s World and the book “Which Comes First, Cardio or Weights? Fitness Myths, Training Truths, and Other Surprising Discoveries from the Science of Exercise.” “People think the joint is just a static, inert hinge that wears down, but it’s actually a dynamic, living thing that can respond to stress and adapt and get stronger,” he says. Rather than wear down cartilage and other joint tissue, running appears to strengthen them, Hutchinson says.
The latest research shows that osteoarthritis isn’t just a result of wear and tear on your joints, says Patience White, vice president for public health policy and advocacy at the Arthritis Foundation. Instead, the disease arises from an interplay between environment and genetics. The strongest risk factors for osteoarthritis are obesity and family history, says White, who is also a professor or medicine and pediatrics at the George Washington University School of Medicine and Health Sciences.
Every extra pound you carry is akin to four pounds on your knees, White says: “If you lose five pounds, that’s like 20 pounds across your knees.” But obesity’s role in osteoarthritis isn’t confined to the extra stress it can put on joints. “People who weigh more also get more osteoarthritis in their wrists, so it’s not just about mechanical loading through the joint,” Hutchinson says. Fat tissue is metabolically active and secretes inflammatory hormones that interact with everything in the body, including cartilage and joints, he says.
Family history is another predictor of osteoarthritis, and researchers have identified several genes associated with a susceptibility to the disease. “If you have osteoarthritis in your family, you’re more likely to get it no matter what you do,” White says.
This sounds like bad news for me, since osteoarthritis runs in my family, and my dad recently had a hip replacement because of the disease. But White says I can delay or perhaps even prevent getting osteoarthritis by staying active and keeping my weight in check. Running accomplishes both.
Still, it’s important to run wisely, White says. If you try to go from the couch to a marathon without putting in the necessary training, you’re liable to get hurt. Injury ups the risk of osteoarthritis, although developing the disease takes the kind of traumatic injury that tears ligaments or tendons — problems that more commonly occur in sports that involve contact or require sudden changes in direction. Such injuries increase osteoarthritis risk by promoting abnormal mechanics or by creating scarring that can strain the joint, White says, and an injury can deliver a double whammy by forcing a decrease in physical activity that leads to weight gain.
More than 50 percent of people who have a serious knee injury such as a ligament or tendon tear will develop osteoarthritis within 10 years, White says. “If you’ve had a bad knee injury at age 15, chances are you’ll have osteoarthritis at 25.”
While running wasn’t associated with osteoarthritis in the Williams study, other types of exercise, such as soccer and hockey, were linked with a greater risk of developing the disease. “We’re trying to pursue that further,” Williams says.
Given that other activities seem to increase osteoarthritis risk, why does running get a bad rap? Some of it may be schadenfreude, Hutchinson says. “Every time a runner gets osteoarthritis in their knee, all their friends and family say, ‘See? I told you you shouldn’t have run. You did this to yourself,’ ” he says. “But when five non-runners get osteoarthritis, people just say, ‘Well, I guess you’re getting old.’ ”
I am getting older, and even after decades of running, my knees feel better now than they did when I was 20. I hope I never have to quit trail running, and Williams says that if I keep at it, chances are good that I won’t have to stop anytime soon.
Last Thursday, the Senate Appropriations Committee approved a spending bill for FY 2014 that, for the first time, provides resources to a student loan forgiveness program for pediatric rheumatologists willing to provide care in underserved areas. To achieve this goal, Arthritis Advocates sent over 2,000 messages to the Senate requesting their support and Arthritis Ambassadors worked with key, influential Senators to take a stand for children with juvenile arthritis. The Senate Appropriations Committee has proposed $5 million for the program and it’s a direct result of the work of Arthritis Foundation advocates, volunteers, and staff.
There are currently 300,000 children in America living with juvenile arthritis and less than 250 board-certified, practicing pediatric rheumatologists to care for them. If funded, this program will address a critical shortage by creating an incentive to pursue a career in pediatric rheumatology and placing well-trained providers in areas of need. To receive funding in FY 2014, the House of Representatives must also include funding in their proposed FY 2014 spending bill, which the House is currently drafting. Click here to send a pre-drafted message to your Representative requesting their support for the Pediatric Subspecialty Loan Repayment Program.
Several staff members of the Public Health Policy and Advocacy attended the Washington, DC Arthritis Walk on Saturday, May 18th. Laura Keivel, Coordinator of Advocacy Operations, served as Advocacy Chair for the event. Staff members and volunteers collected e-advocate sign-ups and talked about what everyone can do to support arthritis advocacy. Participants of the DC Walk took in the sights on the National Mall as they completed their walk. To learn more about our issues and to let your voice be heard on Capitol Hill, click here!
Members of the Arthritis Foundation Public Health Policy and Advocacy staff in Washington, DC joined Surgeon General Dr. Regina Benjamin in a walk around Capitol Hill on May 15. Dr. Benjamin is hosting a series of walks throughout the month of May to raise awareness of the good walking can do for overall wellness. Additionally, Dr. Benjamin is raising awareness for the need for more walkable communities.
The walk started off with some Zumba moves and concluded with light stretching. Guests included Miss District of Columbia, Miss District of Columbia Teen, Miss Maryland, Miss Maryland Teen, as well as many government workers, public interest groups, Capitol Hill staffers, and wellness professionals.
If you are in the DC area and want to join, please visit the Surgeon General’s website for more information. To get walking in your area, learn more about the Arthritis Foundation’s Walk with Ease program.
On May 9th, Kathy Gingrich Lubbers presented at a briefing called “The Value of Public-Private Partnerships in Advancing Treatment for Rheumatoid Arthritis”. The briefing was sponsored by the Congressional Arthritis Caucus, in partnership with the Arthritis Foundation, the Personalized Medicine Coalition, the American Society of Clinical Rheumatologists, and Crescendo Bioscience.
Congressional Arthritis Caucus co-chairs Rep. David McKinley (R-WV) and Rep. Anna Eshoo (D-CA) welcomed over 50 staffers and guests to the event and gave a few remarks.
Steve Hoffmann, the Scientific Program Manager at the Biomarkers Consortium spoke on advancements in RA treatment and how the public-private partnerships allow for breakthroughs to happen. Additionally, Dr. Max Hamburger, President, American Society of Rheumatologists gave a detailed talk on the effects of rheumatoid arthritis and how advances in biologics have made RA more manageable.
Kathy Lubbers spoke of her experiences with RA and how biologics have enhanced her life. Without them, she said, she may have very well been confined to a wheel chair. She also spoke of the importance of maintaining funding for essential programs at the National Institutes of Health that spearhead advances in RA treatments and medication. For more information, please visit our page on the Arthritis Foundation NIH policy priority.
For more information on the briefing and for any questions, please contact Kim Beer, Director, Advocacy at firstname.lastname@example.org.
The Arthritis Foundation urges the administration and congress to protect vital discretionary programs as it works to reduce the nation’s deficit.
The Arthritis Foundation supports new bipartisan legislation introduced in the House of Representatives this week that will increase affordability of medications for more than seven million Americans, including 300,000 children, with rheumatoid arthritis (RA), and other inflammatory diseases. If passed, the Patients’ Access to Treatment Act of 2013 (H.R. 460), introduced by Rep. David B. McKinley (R-WV) and Rep. Lois Capps (D-Calif.), will limit cost-sharing requirements for medications placed in a specialty tier and make innovative and necessary medications more accessible by reducing excessive out-of-pocket expenses.
Because of increasing costs, many insurance plans have instituted a tiered payment system for medications, often labeled ‘generic,’ ‘preferred,’ and ‘non-preferred’ and each have a set cost-sharing amount. A fourth tier, known as ‘specialty tiers,’ utilizes high patient cost-sharing for certain expensive medications. Patients who receive specialty tier medications pay a percentage of the cost of the drug, instead of paying the fixed amount, which results in skyrocketing costs for a single medication.
Biologic medications, including arthritis disease-modifying therapies, are increasingly found in specialty tiers. The result is high out-of-pocket costs, ranging from hundreds to thousands of dollars a month for a single medication. Because of this financial burden, people with arthritis may stop taking their prescribed medication or skip doses because they simply cannot afford it - even with health insurance and a prescription drug plan. Because there are no generic alternatives to biologics, the specialty tier cost-sharing structure negatively impacts people that depend on biologics - people with RA, psoriatic arthritis and other forms of inflammatory arthritis.
“This practice is unacceptable and discriminates against patients with chronic conditions. Cost-sharing for prescription medications should not be so large as to restrict or interfere with people’s treatment,” says Amy Melnick, vice president of advocacy for the Arthritis Foundation and co-chair of the Coalition for Accessible Treatments. “The Arthritis Foundation is one of 18 members of the Coalition for Accessible Treatments which encourages patients and physicians to ask lawmakers to support and co-sponsor the Patients’ Access to Treatments Act of 2013.”
Arthritis Foundation President and CEO Dr. John H. Klippel joins HHS Secretary Kathleen Sebelius in support of changes to the government insurance programs that will make it easier for Americans with pre-existing conditions to get health insurance coverage. Changes announced today to the Pre-Existing Condition Insurance Program (PCIP) will offer more Americans with chronic conditions, like arthritis, access to affordable coverage. Created under the Affordable Care Act, the PCIP is for people who are unable to purchase coverage due to their medical conditions.
"The seriousness of arthritis makes it unacceptable for people with it, or any other chronic disease, to be denied access to care and medications they need for any period of time," says Klippel. "The Arthritis Foundation is pleased to collaborate with the Secretary and Administration in raising awareness about this program to help individuals without insurance and with pre-existing conditions."
For more information on PCIP, visit https://www.pcip.gov/.
The Congressional Arthritis Caucus held it's inaugural event on May 13, 2011 in honor of Arthritis Awareness Month. The event, "A Step Against Arthritis" invited congressional staff and local volunteers to Capitol Hill to symbolically walk around the Capitol and raise awareness about the importance of movement in the prevention and treatment of arthritis. Prior to the walk, a brief press event was held where participants heard from Dr. Jack Klippel, CEO and President of the Arthritis Foundation, and author and television personality Christine Schwab. Special thanks to Representatives Myrick (R-NC) and Eshoo (D-CA) for hosting the event and for the many local advocates who came in community spirit.
On behalf of the Arthritis Foundation, Kimberly Beer provided public comment on April 12, 2011 before a meeting of the Advisory Group on Prevention, Health Promotion and Integrative and Public Health (Advisory Group), chaired by U.S. Surgeon General Regina Benjamin. During her testimony, Kimberly shared startling statistics about the prevalence of arthritis among Americans and how the pain of arthritis is often a strong barrier to the treatment of many chronic diseases. Her statement urged the Advisory Group to include arthritis when developing their National Prevention Strategy.