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News for Advocates of the Arthritis Foundation, Great West Region
Spring 2013

Articles This Issue

Advocacy Summit Highlights
The 2013 Advocacy Summit brought together over 300 advocates from every state, including 40 advocates from the Great West Region!  You can take action to continue these arthritis advocacy initiatives.  Learn how.

Advocates in Action
See photos of the Great West Region's 40 delegates that attended the Arthritis Foundation Advocacy Summit in Washington DC.  See photos from the Summit.

Issue Feature
The Patients' Access to Treatment Act of 2013 would end specialty tier cost-sharing and provide relief for millions with arthritis. Discover more.

Arthritis Stories
Mary's RA has given her a new appreciation of good friends and led her to become the Grand Marshal for the Vancouver/Portland Arthritis Walk.  Read her story.

Advocates Bringing It Home:  Voices from the Great West
Do worries about the high cost of your medications have a major impact on your life?  Please take a moment to share your story with us to help move the Patients Access to Therapy Act through Congress!  Find out more.

Advocacy Skill Builder
Do you know your Representative? New districts were created late in 2012 - so your Representative may have changed.  Find out how.

Faces of Arthritis
Loren from Oregon is one of the 50 million faces of arthritis.  Read his story and the story of others affected by arthritis at www.facesofarthritis.org

Sign-up as an E-advocate

Get Connected

 


 

Advocacy Summit Highlights

 

The 2013 Advocacy Summit brought together over 300 advocates from every state, including more than 40 advocates from the Great West Region!

This year’s theme, “Talk About Arthritis Face to Face,” gave advocates a chance to meet with congressional offices to share the message with Congress that more needs to be done for people with arthritis.

Our visits focused on three requests:


Even with a snowstorm shutting down the DC area on the final day of the Summit, this year’s visits were a success. Many advocates made their final meetings by phone, and a few had surprise meetings in the airport and even on the airplane! One sign of success was the doubling of co-sponsors signed on the Patient’s Access to Treatment Act (HR460), now including Representatives Suzanne Bonamici (D-OR1), Peter DeFazio (D-OR4) and Don Young (D-AK).

Sum it TVThere is still much work to be done, and you can access the same great trainings to make a difference right from home! Many of the best events were taped and are now available for viewing at the Virtual Summit headquarters.

Watch them, learn and save the date for the 2014 Advocacy Summit, March 24-26, 2014.

 

 


 

Advocates in Action

 

GWR advocatesAdvocates in action at the 2013 Advocacy Summit, including Arthritis Foundation, Salt Lake City Board member Jeff Rasmussen, National Arthritis Foundation COO Roberta Byrum, National Arthritis Foundation Board member Janalee Taylor and Arthritis Foundation, Great West Region Board member Bruce Ashcroft.

 

Meaghan and Dr. Summar

Meaghan Victory and Dr. Karen Summar, legislative counsel for Rep. Cathy McMorris Rodgers.

 

 

 

 

CO advocatesArthritis Foundation Ambassador Anita Fricklas snapped a picture of the Colorado delegates who braved the snow storm to make Congressman Bennet’s coffee hour. From left to right: Arthritis Foundation staff member Laura Rosseisen, Arthritis Ambassador Kim Gent, Arthritis Foundation staff member Jill Lysengen, Arthritis RA Alliance Member and Advocate Shannon Teslow, and Anita’s granddaughter Gabriella.

 

WA advocates

Dr. Mary Bach, Chloe Steen, Tonya Potocki, Nick Steen, Meaghan Victory, Carlyn Reeser, Dr. Steve Overman and Holly Overman met in the Senate Budget Offices with Megan Foster, legislative aide for Senator Patty Murray.

 

 

Ross family

The Ross family from Oregon pose in front of the Washington Monument during their time at the Advocacy Summit. All three family members that attended the Summit are affected by a form of arthritis.

 

Brenda

Montana Senator Jon Tester posed with Arthritis Foundation staff member Carrie Strike and advocate Brenda Serano after a productive meeting.

 

Munkres

Kayla and Terri Munkres from Idaho posed for a quick photo op with legislative staff from Senator Risch’s office.

Kayla's thoughts on the Advocacy Summit, "It was a great experience and opened the eyes of the government for me. I learned a lot, primarily how complicated politics is. It was fun as well, and everyone I met had a smile on their face. I would go again in a heartbeat. Thank you for this amazing opportunity and I hope to go back next year."

Terri's thoughts on the Advocacy Summit, "We have always supported the Arthritis Foundation on a local level. This was our first national event with the Arthritis Foundation and it was an amazing experience. We were able to advocate for the Arthritis Foundation on an national level while having an exposure to how the Arthritis Foundation has been advocating for us. The trip was amazing!!!" 

 

Victory family

Meaghan Victory and her father, Tom, stayed an extra day so they could sport arthritis awareness pins at a White House Tour.

 

 

 


Issue Feature

 

Patients’ Access to Treatment Act of 2013 would end specialty tier cost sharing and provide relief for millions with arthritis.

PATA collageThe Arthritis Foundation supports new bipartisan legislation introduced in the House of Representatives this year 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 Johanna Lindsay, Vice President, Programs for the Arthritis Foundation, Great West Region. “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.”

You can help those with arthritis improve the affordability of their medications. Please take a moment to share your story with us to help move the Patients’ Access to Therapy Act through Congress! Use our Medication Burden Survey Tool to share your perspective.

 


 

Arthritis Stories

 

Mary Hatzenbeler
Grand Marshal for the 2013 Vancouver/Portland Arthritis Walk

 

Mary HatzenbelerMary’s journey began five years ago when she woke up one morning and was unable to move her right arm. “In only a few short weeks, I had the diagnosis of Rheumatoid Arthritis.” Now Mary’s RA is controlled with medications that help to relieve her symptoms and reduce inflammation. Since Mary’s diagnosis she has leaned on friends and family to help her cope. “I have definitely learned who my true friends are! They are there for me whenever I need a hand - opening a jar, driving to an appointment, listening to my complaints. I treasure them!”

Join Mary (pictured at left with some of her family members) and hundreds of others affected by arthritis at a local Arthritis Walk this spring. When you do, you’ll be raising awareness and support on behalf of the 50 million Americans affected by arthritis. Register, form a team, invite friends and family or volunteer to recruit arthritis advocates at the event.

Find out more:
Arthritis Walk

 

 


 

Advocates Bringing It Home: Voices from the Great West

 

Do worries about the high cost of your medications have a major impact on your life? If you pay a percentage (not a fixed dollar amount) for your arthritis medicine, we need your story!  Please take a moment to share your story with us to help move the Patients’ Access to Therapy Act through Congress!

 


 

Advocacy Skill Builder

 

skill builder logoKnow Your Representative!
Do you know your Representative? New districts were created late in 2012 – so your Representative may have changed. Visit the U.S. House of Representatives’ page to find out who your current member of Congress is, the issues they are focused on, and where their local office is back home in your district.

While you are there, consider signing up for their email newsletters. This is an easy way to stay up to date on issues your Representative is working on in Congress!


 

Faces of Arthritis

 

LorenFace of Arthritis text 

Loren from Oregon is one of the 50 million faces of arthritis.
Read his story and the story of others affected by arthritis at www.facesofarthritis.org

  


 

Sign-up as an E-Advocate

 

e-advocates

You, your friends and family members can make an impact for the 50 million Americans affected by arthritis by signing-up to become an Arthritis Foundation e-advocate. Share this AForum e-newsletter with those who you think may be interested in joining the movement!

 


 

Get Connected

Find your local Arthritis Foundation office to get connected to local staffprograms, events and volunteer opportunities.  Manage your subscriptions to get the latest Arthritis Foundation e-newsletter publications sent to you. 

Feedback or ideas for AForum future stories? E-mail wbalmer@arthritis.org

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