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2015 Advocacy News & Letters

November 3, 2015

Arthritis Foundation Sends Letters in Support of CDC Funding

The Arthritis Foundation sent letters to the House of Representatives and Senate urging them to restore funding to the CDC Arthritis Program in FY2016.  The CDC Arthritis Program is the only federal program dedicated solely to arthritis.  With a 25% cut in FY2015, the CDC Arthritis Program has had to make program and grant cuts ranging from 10%-15%, with some program eliminations.  If these cuts are sustained in FY2016, cuts will be even deeper, the program will have less reach, there will be less translation and dissemination of evidence-based programs, and less funding for partnerships.  To take action on this issue, become an Advocate to receive the latest news and updates.

October 28, 2015

Arthritis Foundation Sends Comments to FDA

The Arthritis Foundation issued comments to the Food and Drug Administration on nonproprietary naming of biological products for industry. Read the comments sent to the FDA.

October 23, 2015

Arthritis Foundation Testifies at FDA

Dr. K. Andrew Crighton, Chair of the Arthritis Foundation Advocacy Committee, testified at the Food and Drug Administration on safe and effective treatments for gout. Please read Dr. Crighton’s testimony as well as the Arthritis Foundation’s comments.

October 16, 2015

MapRX Medicare Information Available

Check out the MapRX 2016 Medicare Prescription Drug Annual Open Enrollment brochure.  This document includes answers to some important questions and can help you during the Annual Open Enrollment.

September 10, 2015

Arthritis Foundation and American College of Rheumatology Release Letter Regarding Joint Replacement

The Arthritis Foundation released joint comments with the American College of Rheumatology regarding the proposed CMS Comprehensive Care Joint Replacement Payment Model (CCJR). Click here to read the letter.

September 10, 2015

Arthritis Foundation Comments on Medicare Physician Fee Schedule

The Arthritis Foundation has submitted comments to the Centers for Medicare & Medicaid Services regarding the Medicare Physician Fee Schedule. The comments surrounded the current proposal to assign one Healthcare Common Procedure Coding System (HCPCS) code to all biosimilars of a particular reference product. Click here to read the comment letter.

August 14, 2015

Arthritis Foundation Provides Comments on PDUFA VI

The Arthritis Foundation has provided comments to the Food and Drug Administration regarding the Prescription Drug User Fee Act (PDUFA) VI. Click here to read the comment letter.

July 29, 2015

Arthritis Foundation Signs On to REAP Coalition Medicaid and CHIP Letter

On July 27, 2015, the Arthritis Foundation signed on to a letter spearheaded by the REAP Coalition applauding Centers for Medicare & Medicaid Services (CMS) efforts to modernize the Medicaid managed care regulations. Read the letter here.

July 20, 2015

Juvenile Arthritis Advocacy Webinar Now Available

The third installment of the Advocate Webinar Series was on July 15, 2015 at 3:00 pm Eastern. Guests included Michelle Greenhalgh with the Office of Rep. Joe Courtney (D-CT) and Ted Alexander with the Office of Rep. Chris Collins (R-NY). Listen to the webinar recording here.

June 30, 2015

The Arthritis Foundation Supports Out-Of-Pocket Cost Comparison Tool in the Federal Marketplaces

The Arthritis Foundation joined 102 other organizations in a letter to the Centers for Medicare and Medicaid regarding drug-specific out-of-pocket (OOP) costs in the 2016 federal marketplace proposed OOP cost estimator. Click here to read the letter.

June 30, 2015

21st Century Cures Webinar Now Available

The 21st Century Cures Advocate Webinar was held on June 17, 2015. It featured Rep. Larry Bucshon (R-IN), 2014 Edward M. Kennedy Advocacy Award Winner Hanna Gruen, and the Arthritis Foundation's Director of Health Policy and Federal Affairs Anna Hyde. If you missed the webinar when it was live, you can listen to the recording here.

June 23, 2015

The Arthritis Foundation Provides Comments to the Finance Committee Chronic Care Working Group

The Arthritis Foundation sent comments to the Finance Committee Chronic Care Working Group regarding care coordination and access issues. Read the comment letter here.

June 23, 2015

Arthritis Foundation Signs Letter Endorsing H.R. 1859

The Arthritis Foundation has signed on to a letter endorsing H.R. 1859, the Ensuring Children’s Access to Specialty Care Act of 2015. Read the support letter here.

June 17, 2015

Arthritis Foundation Signs on to Letter Opposing Defunding of DoD Research

On June 10, the Arthritis Foundation signed on to a letter opposing a filed amendment to the National Defense Authorization Bill that would defund all Department of Defense research not directly related to deployment, combat, recovery, and rehabilitation. Arthritis research would have been included in the defunding. Thanks in part to the efforts of the Arthritis Foundation's Advocates and Ambassadors, the amendment will not go to the floor for debate. Read the letter here.

June 12, 2015

Arthritis Foundation Releases Letter of Support for 21st Century Cures Bill

The Arthritis Foundation has released a letter of support for H.R. 6, the 21st Century Cures Act. Along with the letter of support, the Arthritis Foundation has also released an informational document on what 21st Century Cures can do for people with arthritis. Read the letter of support here, and read the informational document here.

June 11, 2015

The Arthritis Foundation Provides Input on Biologic Naming

The Arthritis Foundation recently submitted comments to the World Health Organization regarding the naming of biologics. Given the complexity of biologic drugs, the Arthritis Foundation urges the World Health Organization to ensure that its system for assigning a Biologics Qualifier provides for clearly identifiable distinct non-proprietary naming for all biologics, including biosimilars.

Read the Arthritis Foundation's comment letter here.

June 5, 2015

The Arthritis Foundation Supports H.R. 1859, Ensuring Children's Access to Specialty Care Act

The Arthritis Foundation recognizes the need for more pediatric rheumatologists and supports H.R. 1859, the Ensuring Children's Access to Specialty Care Act. Read more about H.R. 1859 here and read a letter from our CEO thanking the bill's sponsors here.

May 20, 2015

Arthritis Foundation Comments on Draft Pain Strategy

The Arthritis Foundation submitted comments to the National Institute of Neurological Disorders and Stroke at the National Institute of Health on their recently released National Pain Strategy draft. Read the Arthritis Foundation's comments here.

May 18, 2015

Biosimilars Briefing Recording Available Now!

Dr. Harry Gewanter, a pediatric rheumatologist from Richmond, Virginia, and Mark Guimond, Director of State Legislative Affairs presented an overview on biosimilars and state legislation pending on this issue on May 11th, 2015.  Please click here to view the presentation.  You will need an ARF player to view the Webex – please click here to download the player.

NC Lobby Day

May 15, 2015

North Carolina Advocates Meet in Raleigh

NC Advocates spent the day at the Capitol in Raleigh meeting with legislators regarding bills on step therapy and biosimilars.  Pictured are: Back Row L > R Michelle MacArthur, Claudia Stewart (AF), Senator Ron Rabin, Dr. Greg Schimizzi, Candice Fuller (AF).  Front Row L > R Logan Govan, Mindy Govan.  Not pictured Danielle Holm.

May 12, 2015

Arthritis Foundation Signs On to Off-Label Guidance Letter

The Arthritis Foundation signed on to a letter urging Representatives Fred Upton and Diana DeGette to place guidance in the upcoming 21st Century Cures legislation regarding off-label use of approved drugs and devices. Read the letter here.

March 9, 2015

Calling All Veterans With Arthritis: Share Your Stories

One in four veterans has doctor-diagnosed arthritisa diagnosis that is the second highest cause of military discharge. We want to tell your stories and ask Congress for more research dollars to cure, prevent and better treat arthritis. The Department of Defense has an active research program and we want more of those dollars to go to arthritis. Research advances there mean research advances for all people with arthritis, and eventually a cure.

The Arthritis Foundation is devoting more of our attention and legislative agenda to the higher incidence of arthritis among veterans and military service personnel. We want to help tell the personal stories of all people with arthritis, prompting the need for more research dollars from the Department of Defense.

To show the importance of this issue, the Foundation is drafting a report on the effects of arthritis among military personnel and why this population requires additional attention. We hope to dedicate an entire section of the report to sharing the personal stories of military personnel with arthritis. Help us reach this goal by sending your stories.

If you are an active duty service member, a caregiver or a veteran who has arthritis as a result of your military service, please share your experiences. For further questions, or to help with this project, please contact us at advocacy@arthritis.org.

Thanks in advance for your help, and thank you for your service.

March 9, 2015

Washington State Advocate Speaks to Senate Health Committee

Arthritis advocate Alyssa Long testified in front of the Washington State Senate Health Committee in support of required communication from a physician to authorize biosimilars as a substitution for biologics. The Arthritis Foundation believes this communication should occur within 48 hours of the proposed substitution. Long noted in her testimony that biologic medications have changed her life in a positive way, and that lower cost biosimilars may provide greater access to these medications. Click here to hear Long’s testimony.

The Arthritis Foundation agrees that biosimilar medications can provide safe and effective treatment for people with arthritis at a potentially lower cost than name-brand biologic medications. Biologics have offered significant therapeutic benefits to thousands of arthritis patients and have helped many others living with complex chronic diseases. This new class of biosimilars is expected to enter the market place very soon. These complex, genetically-engineered products offer new treatment opportunities for people with forms of inflammatory autoimmune arthritis and other chronic diseases, such as Psoriasis, Crohns and Colitis.

February 20, 2015

Arthritis Foundation Comments on 21st Century Cures Draft Legislation

The Arthritis Foundation commented on the House of Representatives’ landmark 21stCentury Cures draft legislation, which would re-vamp the way research is conducted in order to accelerate the discovery, development and delivery of treatments and cures for disease. The comments urged Congress to focus more on patient access and out-of-pocket cost issues, and discussed the need to accelerate research on diseases like osteoarthritis, which has no cure and no effective therapeutic treatments.

February 12, 2015

Arthritis Foundation Leads Letter on Key Affordability Issue

The Arthritis Foundation spearheaded a sign-on letter this week to the House of Representatives regarding inclusion of the Patients’ Access to Treatments Act (PATA) in their landmark research legislation.

Thirty national patient groups signed the letter, noting that scientific discovery and development are meaningless if patients can’t afford treatments.

The House Energy and Commerce Committee worked for the last year on sweeping legislation to improve the way treatments are discovered, developed and delivered to market. PATA would limit patient cost-sharing in the highest cost insurance tiers, which would make costly drugs much more affordable for people with arthritis.

February 12, 2015

Arthritis Foundation Testifies in Georgia

On January 28, Mark Guimond, the Arthritis Foundation’s Director of State Legislative Affairs, spoke about biosimilar legislation before the Georgia legislature’s Joint House and Senate Health & Human Services Committee. The testimony focused on the benefits that biologic medications have brought to people with arthritis and the cost of the medicines. “The issue of affordability is not just out-of-pocket what [people with arthritis] are likely to save, it also involves medical adherence. If someone can afford their medications, they will stay on them,” Guimond said.

Guimond was joined by Arthritis Foundation Ambassador Kerry Tucker, who testified about her personal story of living with arthritis and her $1,300 monthly medication expense. “I want patients who cannot afford this option to find hope and relief with biosimilars,” Tucker said.

The hearing can be found on the Georgia legislature’s LiveStream. (Guimond’s testimony begins at 37:15; Tucker’s testimony begins at 44:05.)

January 28, 2015

Take Action in West Virginia!

If you are living in West Virginia, the Arthritis Foundation encourages you to send a letter to Senator Shelley Moore Capito encouraging her to introduce the Patients' Access to Treatments Act in the Senate. 

The bipartisan Patients’ Access to Treatments Act (PATA) will soon be re-introduced by Representatives David McKinley (R-WV) and Lois Capps (D-CA), and would control high cost-sharing for specialty medications, enabling more patients with chronic, disabling conditions like rheumatoid arthritis to afford the treatments they need.   Because specialty medications like biologics are so expensive, health insurers have shifted the cost burden to consumers. In the past, insurers charged fixed co-pays for different tiers of medications: generics (Tier I), name brands (Tier II), and off-formulary brand medications (Tier III). Co-pays might be set at $10, $20 and $50 for the three tiers. Now, specialty tiers (Tier IV) commonly require patients to pay a percentage of the drug’s cost, or a co-insurance payment that can range from 25% to 50% of the medication’s total cost. This translates to hundreds -- even thousands -- of dollars per month in out-of-pocket costs for a single medication. We believe a patient’s financial responsibility or cost-sharing for a prescription drug should not be so high that it restricts access to medically-necessary medications.  

PATA seeks to limit cost-sharing requirements for medications in specialty drug tiers (typically Tier IV or higher) to the dollar amount applied to drugs in a non-preferred brand tier (typically Tier III). We believe Senator Shelley Moore Capito would be an ideal candidate to introduce this bill in the Senate, as she was an original PATA co-sponsor while serving in the House of Representatives during the last Congress. She is also a member of the Arthritis Caucus and her home state, West Virginia, has the highest rate of arthritis in the country, at 36 percent of the population.

Please help us encourage Senator Capito to introduce PATA by writing a letter or sending an email to her office. A sample letter is available for you to personalize and send to her office. Please be sure to personalize the letter with your story and how the high cost of medications effects you in paragraph 2.  If you have any questions or need assistance, please contact Anna Hyde, Director of Health Policy and Federal Affairs, at ahyde@arthritis.org or 202-887-2917.  Thank you for taking action!

January 28, 2015

Arthritis Foundation Signs on to Letter to HHS Secretary Sylvia Burwell

The Arthritis Foundation recently signed on to a letter from the Genetic Alliance to the Department of Health and Human Services. Please click here to read the letter.

January 13, 2015

Arthritis Foundation Comments on Hyaluronic Acid in Severe Degenerative Joint Disease

The Arthritis Foundation recently sent a letter to the Agency for Healthcare Research and Quality regarding the use of hyaluronic acid in severe degenerative joint disease. To read the letter, please follow this link.

January 13, 2015

Arthritis Foundation Comments on a Draft Letter to Issuers in the Federally-Facilitated Marketplace

The Arthritis Foundation recently sent a letter to the Centers for Medicare and Medicaid Services commenting on several proposed reviews related to out of pocket costs and prescription drug coverage. The letter can be read here.

January 6, 2015

Op-Ed in Iowa Takes On Prior Authorization Rule

Arthritis Foundation Ambassador Chris Andersen, wrote an op-ed to The Gazette to the on a proposed rule in Iowa that would make patients wait up to three days for critical access to care.

January 5, 2015

Arthritis Foundation Comments on Patient Protection in Medical Product Discussions

The Arthritis Foundation sent a letter to the Food and Drug Administration expressing concerns about the patient role in drug development.  Please click here to view a copy of the letter.