Arthritis Foundation, Great Lakes

2013 Advocacy Update from Pam Fields, Arthritis Foundation Region Director Advocacy and Public Policy

The 2013 Advocacy Summit will always be remembered for the Snowquester, the name the weather reporters dubbed the major storm system that raged “around” Washington, DC.  Normally, attendees visit the Senate members on Tuesday afternoon and the House representatives on Wednesday.  In anticipation of the storm, the Federal Government closed on Wednesday and our buses were not permitted to operate. 

A few House offices remained open and some hardy advocates took the Metro to get to their meetings.  Everyone else called the House offices and left messages or had phone meetings. The exciting news is that the Great Lakes Region had many of its House visits scheduled on Tuesday, so we didn’t lose too many opportunities. The results of the trips to the Hill will be revealed in the next few weeks. 

Click Here to View Photos from the 2013 Advocacy Summit

There are a few highlights to share now and hopefully more in the future as the ambassadors and attendees report in:

• There were 36 representatives from the Great Lakes Region at the Advocacy Summit actively carrying the Arthritis Foundation’s message to the Hill

• Pat McMahon (Ohio River Valley) participated  the Rheumatoid Arthritis Alliance meeting and stayed for the Summit

• Carol Arbaczewski (Northeastern Ohio) attended the Public policy and Advocacy meeting

• Pete Barnhart (Central Ohio),  Janalee Taylor(Ohio River Valley)  and Chris Smith were in town for the National Board meeting and actively participated in the Summit

• Monday evening trainings were required this year and groups were divided into New, Intermediate and Experienced Advocates where each group received appropriate training

• Tuesday, the tools to enable advocates to communicate the three arthritis priorities for this Summit to their legislators

• In the afternoon, states split up and visited their Senator’s offices on the Hill. Some even saw the members in person. A few also had some Representative meetings scheduled

Successes include:

• Face to face meetings with several Senators and members of the House of Representatives

• A photo of the KY advocates showed up in Senator McConnell’s Newsletter

• A group attended coffee with Senator Brown(OH) at his Thursday Morning Coffee at the Capitol

• Senator Brown agreed to do a short video for the OH Walks

• Senator Brown had an entire newsletter, since the Summit, dedicated to access to medications

• Senator John Conyers co-signed the Patient Access to Treatments Act the day after a meeting with a Michigan Ambassador, Joy Suddath

• Other office visits with legislative aides generated questions and attendees follow up with further information and thanks you notes already

• Some attendees have already scheduled home visits with those Representatives they missed on Wednesday.

• Most of the new attendees have become Ambassadors.

Thank you to everyone who attended the Arthritis Foundation Advocacy Summit.  You have truly made a difference in the lives of those living with this disease.

Tonya: Day Three

Today is the last day of the Arthritis Summit.  Let me begin with the weather forecast…rain, snow, high winds, and a winter advisory.   Everyone was prepared and enthusiastic about attending the remaining “Face to Face” meetings.  However, we were advised that the meeting will now turn into telephone conversations, emails and letters due to the weather conditions.  Despite the bad weather, the arthritis advocates were still passionate and eager to make phone calls and send emails. 

The Arthritis Foundation staff members were extremely helpful in providing detailed information on the agenda changes and made sure we secured additional hotel/travel accommodations.   Although things may not have went as initially planned, our elected officials still heard our voices through various forms of communication.

 As the 2013 Arthritis Summit came to a close, I realized that this trip wasn’t only about the Capitol Hill meetings but also included meeting new ”Faces of Arthritis”. My husband and I met a lot of people for the first time. I wanted to mention a few personal stories I heard:

• Pam - She was featured in the Arthritis Today magazine several years ago. She lost 30 pounds and currently uses self management techniques of exercising and healthy eating to manage her arthritis symptoms.  She is even able wear high heeled shoes.
• Jennifer & Logan -  Jennifer was diagnosed with arthritis at an early age, and has had several surgeries but keeps on moving.  Her son was also a joy to be around and helps his mother as much as he can. 
• Michelle & Maya -  They drive several hours in order for Maya’s doctor appointments with her pediatric rheumatologist due to limited number of pediatric rheumatologist in their area.  The cost of medication is extremely expensive and in the past, Michelle went without her medication to ensure her daughter was able to receive what she needed.
• Misty & Elise -   Misty’s daughter Elise stopped walking when she was two years old and had several eye surgeries that were caused by the juvenile arthritis.

I mentioned these stories because the arthritis community gets it.  We understand when a person with arthritis has excruciating pain, fatigue, and experiences side affects from medication.  You feel like you are riding on an emotional roller coaster.  We must continue encouraging each other and keep educating the individuals that may not understand that Ignoring Arthritis is Unacceptable.  Let your voice be heard.  

Tonya: Day Two

The second day of the Arthritis Summit was a full day of activities. This was the first day that everyone met in one room and what an awesome experience to see representation from the 50 states.   This was a tremendous accomplishment, over 300 people dedicated to letting their voices be heard on Capitol Hill.  The Great Lakes region (OH, KY, MI, PA, WV) was represented very well and we gather together at our designated tables.  

We spent some time getting to know each other and discussed how we would relate our personal stories to the key Arthritis priorities:

• (1) Sponsors for the Patients’ Access to Treatments Act ( PATA/HR460).  If enacted, this would eliminate the practice of placing medication on “specialty tiers” in commercial health insurance plans which can cost a patient hundreds of dollars per month for a single medication. 
• (2) Support $50 million for the Pediatric Subspecialty Loan Repayment Program to help alleviate the shortage and poor distribution of practicing pediatric rheumatologists.
• (3) Include “post traumatic osteoarthritis” and “rheumatoid arthritis” research at the Congressionally Directed Medical Research Program at the Department of Defense. 

 
Christopher Kush of Soapbox Consulting provided an interactive and fun training session to help the advocates conduct successful meetings with the Senators, Representatives and their staff.  We were now eager to travel to Capitol Hill and meet with our elective officials during our scheduled meeting times. 

The Michigan advocates meet with the Legislative Assistance for Senator Levin and Stabanow office.  They didn’t agree to sponsoring the PATA/HR 460 ACT but indicated that they would review the information with the Senators.  A meeting was also held with Representative John Conyers office.  Senator Conyers represents District MI-13 and already signed to co-sponsor HR 460 - a special thank-you to him for his continued support.    
 
The Michigan Advocates received passes to visit the Senator Chambers after the meeting with Senator Levin’s office.   As they spoke, they agreed on all of the issues and no other Senators were present in the Chambers.  I would say this particular session concluded as a win-win debate.
 
Day 2 of the Summit came to a close with dinner, award presentations and passionate conversations with other advocates.  It was a very productive day and we were well prepared for Day 3 meetings.   

Amy: Home Again

Each year after the Arthritis Foundation Advocacy Summit I return home energized and revitalized.  It’s my personal dose of “Mission Medicine” which is, “To improve lives through leadership in the prevention, control and cure of arthritis and related diseases”.  Nearly 350 men, women and children were advocating to improve the lives of the 50 million people living with arthritis and related diseases.

We share the same mission, we have the same goals.  We want a world free of pain and suffering.  We want to be able to open a bottle of water without asking for help.  We want to get up from the chair without a groan.  We want to wake up in the morning without pain and stiffness.  We want life without braces, crutches, medications, steroid injections and multiple surgeries.  We want to lead a “normal” life!!!

I know I sound like a broken record.  If you haven’t already written your Senators and your Representative, why are you waiting???!!!  Please tell your legislators why you would like them to support our priorities.  Tell them your story.  Visit their office.  Make it personal:  http://www.arthritis.org/advocacy/advocacy-priorities/

Amy

Amy: Celebrating our Successes – Wednesday Evening

Cameron Young Shares his Compelling Story at the 2013 Advocacy Summit

Due to the snow storm around the Washington, D.C. area, many of us were unable to leave due to canceled flights.  We took advantage of our extra time and went to dinner as a group from the Great Lakes Region.  It was a time to share our stories and successes.

In spite of government offices technically being “closed,” some of the legislators and their staff could be found in their offices.  Pete Barnhart (Ohio) should receive an, “Above and Beyond” reward for his extra efforts today.  Pete was not about to let a few snowflakes stop him.  He went to Capitol Hill and took a chance that staff would be working in spite of the closure.  His efforts paid off and he was able to distribute packets of information with our priorities to most of Ohio’s representatives.  He was even able to speak to the aides in some of the offices.  Thank you, Pete!

Another big success in the group was when Angela Young (Kentucky) called her representative’s office intending to leave a message.  She was told Andy Barr (R-06) was in the office and if she wanted to come to Capitol Hill, he would see Angela and her son, Cameron.  Congressman Barr was very receptive to the needs of people with arthritis.  He is familiar with the challenges we face every day.  He grew up with a family member who has Juvenile Rheumatoid Arthritis.  Congressman Barr is a new member in Congress and I think we’ve found a new friend and supporter.

These are just two of the uplifting stories we shared at our dinner.  It was nice to hear the successes we had, in spite of the weather.  Overall, I think we had a great day!

-Amy

Amy: Snowquestration due to White Death

Cameron & Angel Young, Pam Fields, Pete Barnhart, Logan Wescott-Wallace, Jennifer Wescott-White

Day three of the Advocacy Summit brought a surprise of a different nature.  SNOW!!  While the local school children are enjoying the day off from school, so are the Government workers.  The Government is CLOSED for the day!
 
Not only are the Government and schools closed, but most flights leaving Washington DC are cancelled as well.  Because of that, I’ll be staying another night in our Capitol along with the others from from our Region. 
 
Due to Congressional offices being closed, we are sending emails to our Representative’s offices instead of our face-to-face appointments.  Unfortunately, there is a lack of personal touch with an email.  However, I am confident because I have had a working relationship with Congressman Chabot’s Health Legislative Assistant for two years now.  He knows me and he knows how arthritis has impacted my life.  He knows I am passionate about the priorities of the Arthritis Foundation.
 
In spite of the relationship with Congressman Chabot’s Health LA, I will schedule an appointment with the Congressman in the Cincinnati office.  It lends a personal touch and definitely has greater impact than an email. 
 
Please consider contacting your Congressional Representative or your Senator.  Tell them your story and how arthritis has impacted your life.  You may reach your Representative at:  http://www.house.gov and your Senator at:  http://www.senate.gov
 
Amy

Tonya: My Journey

Tonya and Eric Hill at the 2013 Advocacy Summit

I was officially diagnosed with a rare form of Arthritis called Relasping Polychrondrits (severe and chronic episodes of inflammation of cartilages) three years ago.  Although I’ve had Fibromyalgia over 20 years, my health issues progressed to this additional autoimmune rare from of Arthritis.  Despite the fact that I live with this chronic health condition, my husband and I  made a personally commitment to be the “FACE & VOICE” for the 50 million adults and 300,000 children that live with arthritis and their families that support them.  OK enough about me - Let’s talk about the Arthritis Summit 2013 in Washington D.C.

Day 1 -March 6th: 

During the airplane ride from Michigan to Washington  D.C., I began reminiscing about the Arthritis Summit my husband and I attended last year. We met a lot of wonderful people,  but most importantly the Michigan advocates/ambassadors were able to tell their personal stories to our elective officials and express the fact that Ignoring Arthritis is UNACCEPTABLE.   And then I stopped reminiscing and realized, we left the camera at home (OOPS). Well, modern technology is great and I will use my iPhone to take pictures.

When we arrived at the hotel, it was easy to register with the Arthritis Foundation staff.  They even had a photo booth where you could take fun pictures. That evening we were divided into groups based on our advocacy experience.  My husband and I attended the Intermediate class and they had various leaders assigned to share their best practices regarding our improving advocacy efforts while in Washington and when we returned home. 

The concept was set-up like speed dating- there were advocacy roundtables and you were able to attend at least three small groups - 15 minutes each session.  I selected (1) The Value of Persistence, (2) Getting your members of congress to local events and (3) How to write an affective OP-ed (Opposite the editorial page).   

The most interesting part of this experience was meeting Hope Cristol, an editor  with the Arthritis Today magazine.  She provided five useful tips on how to get an editor to pay attention to your letter,  if your desire is to get it published. 

I quickly realized that the letter I recently submitted to our local newspaper regarding the upcoming 2013 Arthritis  Summit,  probably didn’t get published due to the fact that I totally included three of the things Hope mentioned NOT TO DO.   However, my plan is to take the advice I received from Hope and resubmit the letter to the editor of our local newspaper.  My goal is to continue to raise awareness about arthritis through all forms of communication.

Stay tuned to part two ——- Day 2.      

Amy: Monday and Tuesday- Research and National Priorities

Amy Barron with President and CEO John Klippel, M.D.

Events began Monday with a presentation titled:  From Discovery to Drugs:  How Today’s Research Evolves into Tomorrow’s Treatments presented by John McKew, PhD - Chief of Therapeutic Development Branch, National Center for Advancing Translational Sciences at the National Institues of Health and CDR Steve L. Morin, RN, BSN - Health Programs Coordinator, Office of Special Health Issues, Food and Drug Administration. 

To make a long story short, the development of drugs doesn’t occur overnight.  It takes years of research to develop some drugs.  Sometimes the drug is successful, other times not.  When a drug is deemed successful, it must then go through the rigorous process of clinical trials.  This can be a process of 20 years or more!  After this process, reporting is continually sent to the FDA from physicians, patients and pharmacies reporting any possible side effects people might be having with the drugs. 
 
Evening sessions were held for three different subgroups:  beginner, intermediate and advanced advocates; ambassadors and Advocacy Summit attendees.  I was asked to lead a session in the intermediate group which included advocates who have attended at least  one or two Advocacy Summits.  My topic was recruiting Arthritis Advocates at the Arthritis Walk.  I am the Mission Delivery Chairperson of the National Arthritis Walk Committee.  One of our national priorities this year is to increase e-Advocates by 30 percent.  This sounds like a large number, but should be attainable.  Most advocates are recruited at special events such as the Arthritis Walk.  The session was well attended and I had fantastic participation from my group.
 
Tuesday began with a general session learning the priorities for our Congressional and Senate meetings.  We learned the importance of these issues and how they relate to people with arthritis.  You can find the priorities here:  http://www.arthritis.org/advocacy/advocacy-priorities/  We also worked with those who are attending the Advocacy Summit for the first time.  We shared with them what to expect and best practices for speaking with our legislators and their staff. 
 
In the afternoon we had sessions scheduled with the Health Legislative Assistants, aka:  Health LAs, in the offices of Senator Sherrod Brown and Senator Rob Portman.  Presentations went well and the Health LAs will review the information we left with them and then present the issues to the Senators. 
 
Be sure to visit http://www.arthritis.org/advocacy/advocacy-priorities/ and then send emails to Senator Brown and Senator Portman.  Tell your arthritis story and let them know that arthritis is not acceptable.  Ask them for their support!
 
-Amy
 
 

An Overview of the Advocacy Summit Legislative Agenda

What an honor to be chosen to represent the state of Michigan on the national stage as we take our fight against arthritis pain to key decision makers in Washington DC! I have seen the devastation of arthritis first hand in both my family and as a staff member of the Arthritis Foundation.  I have witnessed firsthand what the pain of arthritis can do to people of any age. As I travel to Washington DC on Monday, I will reflect on what a great opportunity this is to meet with my Congressional delegation and advocate for a future free from the pain and suffering arthritis can cause!

What are we advocating for? The following is an overview of our legislative agenda that we will be presenting to our Congressional representatives.  After reviewing the materials provided by the Arthritis Foundation I feel confident sharing our goals and objectives so you too can be an advocate for us too!

We are asking Congress to sponsor the Patients’ Access to Treatment Act of 2013 (PATA) H.R. 460, and be part of the solution to lower costs for arthritis medications by eliminating “specialty tiers” in commercial health insurance plans. Because there are no generic alternatives to biologic drugs, the overall financial toll of arthritis can quickly spiral out of control for many families. “Specialty tier” drugs will require patients to pay a higher percentage of the cost of their drug, dramatically increasing their out-of-pocket cost.

Because of the financial burden, people choose to stop taking their prescribed medications or skip doses because they can’t afford it- even though they have health insurance and prescription drug plans. This is unacceptable and can cause negative outcomes in addition to exasperating their condition and in the long term cause additional costs for the healthcare system. Simply put arthritis is a painful disease. Through our efforts we hope that by eliminating “specialty tiers” and reducing the cost of medications, people will be able to continue taking their medications to feel better and have an enhanced quality of life.

Secondly we are asking Congress to support access to pediatric rheumatologists by funding the Pediatric Subspecialty Loan Repayment Program at the Health Resources and Services Administration (HRSA).  Currently there are 11 states without a single, practicing pediatric rheumatologist, and 7 states with only one! This funding will incentivize training and practice in pediatric specialties, such as pediatric rheumatology in underserved areas of the US with up to $35,000 in loan forgiveness for a maximum of three years.

I have been fortunate enough to be involved with the amazing kids at Camp Dakota in Lapeer Michigan the last 4 years and this has taught me that KIDS GET ARTHRITIS TOO!!! Sadly, it can take months to get an appointment with a pediatric rheumatologist, leaving many kids to suffer needlessly with pain and discomfort in the meantime. If we can support these doctors, we support our kids too!

We also plan to ask Congress to fund arthritis research at the Department of Defense (DoD), where a growing need has presented itself due to the growing number of combat service people with osteoarthritis (OA). We need to invest in arthritis research through the Congressionally Directed Medical Research Program (CDMRP), Peer Review Program (PRP) and DoD. Research suggests that stress placed on joints during military training activities, increased rates of injury, and increased weight of packs have led to soldiers and veterans presenting with twice the rate of OA compared to civilians in the same age group. OA is the leading cause of disability and medical discharge in active service members under the age of 40. 

Research would help identify medical and physical interventions to prevent and minimize joint damage and slow or stop the process of deterioration in the joints. I have friends who have served with honor in the military, I know that they can come home with both physical and emotional pain. Soldiers are obviously not the only ones with an increased risk of OA, but since they are so disproportionately affected by it, we need to find out how to prevent it, as well as how to stop it from getting worse. Like so many programs through history that started with the military, this research will help EVERYONE, not just those in the service.  What better way to honor our veterans than by easing their transition into civilian life than by working to help them have a pain free future?  

To learn more, check back in with our blog, or visit our website and become an advocate for those who are currently, and may someday have to battle the fight against arthritis.

-Teresa Wiley, Program Manager, Arthritis Foundation Great Lakes Region