Tag Archives: #advocateforarthritis

Safe Step Act Needs Your Support

Read about what step therapy put a young arthritis patient through.

My name is Sophie Sherman, and I am a rising high school senior from Brookline, Massachusetts. When I was 11, my parents started to notice that I wasn’t acting like myself. Instead of spending time with my friends after school, I would take four-hour-long naps on the living room sofa. Instead of asking for seconds on pasta night, I would barely touch my plate. It seemed like everything I did, be it physical or mental, consumed every ounce of my energy. Continue reading Safe Step Act Needs Your Support

New Step Therapy Reform Law in Oklahoma

The Arthritis Foundation is happy to announce that the Oklahoma legislature passed a new law this month that will protect Oklahomans who are living with arthritis.

The new OK law will reform step therapy. Also known as “fail first,” step therapy is a process that forces patients to try and fail drugs that insurance companies choose before the patient gets to use the medicine their doctor originally prescribed. This may occur even if you are already taking a medication and doing well on it.

Oklahoma Junior Ambassador and AFJROTC member, Brianna Sommers, attended the Arthritis Foundation’s February Legislative Day and was instrumental in passing the step therapy reform bill.

“We did not know at the time of my first diagnosis that step therapy would be the cause of the majority of my pain.

“I was diagnosed with rheumatoid arthritis and fibromyalgia at age 9. I went through years of my doctors having to make me try and fail multiple drugs, due to step therapy practices.

“Doctors are the medical experts and allowing an insurance company to control what medications a physician is able to prescribe is life-threatening. When I heard about the OK step therapy reform bill, I knew I needed to get involved. I needed to not only do it for myself, but I also needed to help others like me.

“I was a part of a group of kids who had cancer, disorders and other life-threatening illnesses, and I thought about how many of those kids were being asked to take unnecessary medications and procedures due to step therapy. When you are dealing with children, sometimes time is of the essence. I’m just glad I could make a difference.” 
–Brianna Sommers, Junior Ambassador from Choctaw

Senate Bill 509 places limits on step therapy and helps get the right medicine to patients faster. The new law was introduced by Sen. Dave Rader and Reps. Cyndi Munson and Jon Echols, and we are so appreciative of their leadership. This is a major victory for all Oklahoma Advocates. Let’s keep up our momentum!

Help us raise awareness about the importance of step therapy reform at the federal level. Ask your member of Congress to support the Safe Step Act. Take action today!

For more information about how to get involved with advocacy in Oklahoma, please contact Kristen Crawford at kcrawford@arthritis.org

 

Utilization Management Getting an Overhaul in Washington State

“Going to the WA Advocacy Summit is always a privilege. Being able to effect change to our health care law is an amazing thing,” says Heidi Barrett, Arthritis Foundation Washington state advocacy chair and a Platinum Ambassador. “Knowing this change will make the lives of the 1.3 million adults and 6,100 children in Washington with arthritis better is a humbling experience.” Continue reading Utilization Management Getting an Overhaul in Washington State

meg maley arthritis foundation advocacy

Meg Maley Joins the Arthritis Foundation to #AdvocateforArthritis

At this year’s 2019 Advocacy Summit, the Arthritis Foundation was excited to welcome Meg Maley, CBS’ “Big Brother” Season 17 houseguest, as a first-time Advocate.

Meg was diagnosed with psoriatic arthritis (PsA) when she was just 12 years old. After her time on “Big Brother” came to a close, Meg decided to use her newly-found platform as an opportunity to share her story of living with PsA and uveitis. Since then, she has emceed the Walk to Cure Arthritis in New York City and hosted a multitude of fundraisers to benefit the Arthritis Foundation.

Continue reading Meg Maley Joins the Arthritis Foundation to #AdvocateforArthritis

Take Action to #AdvocateforArthritis

2019 Advocacy Summit Social Campaign

Kerry Wong Platinum Ambassador

Did you know that the Empowered to Live Yes! Advocacy Summit is taking place in Washington, DC this March 11-12? There, our Advocates and Ambassadors will gather together to be the voice for arthritis on Capitol Hill. We’re calling on you to help amplify the impact of our in-person meetings with legislators by participating virtually in our #AdvocateforArthritis social media campaign on Tuesday, March 12.

Staci Penner Platinum Ambassador

On Tuesday, March 12  our 2019 Advocacy Summit participants will be on Capitol Hill to meet their elected officials and their staff in person to discuss legislative priorities like reforming burdensome step therapy practicesbuilding the congressional arthritis caucus, and even securing funding for research for a cure!

You have an important role to play in making sure these messages stand out to our members of Congress—you can help us #AdvocateforArthritis by participating in our social media campaign. With over 97% of Congress using social media platforms like twitter and facebook to connect with their constituents and learn about what is important to them, we have an enormous power to influence our policymakers by uniting online!

You can take action in five easy steps: 
  1. Create your sign: Print out this sign and in one sentence, written large and legible, tell us why you #AdvocateforArthritis!
  2. Take your picture: Hold your sign and snap a picture- it’s important that your words are large and easy to read in the picture. Ask a friend to take your picture so they can help make sure your message is clear!

    Maggie Barrett Junior Ambassador
  3. Set an alarm: Our goal is to flood the internet with our messages of hope and determination at 12:00 pm Eastern Time on March 12. Coordinating our posts will help our hashtag gain traction on social media. Set an alarm on your phone or calendar right now to remind yourself to post your picture online at 12:00 pm eastern on March 12!
  4. Plan your Post:Your post can be simple, just reiterate the reason that you #AdvocateforArthritis! You’ll want to make sure to include the hashtag #AdvocateforArthritis and tag the Arthritis Foundation. You can find us on FacebookTwitter @ArthritisFdn and Instagram @arthritisfoundation.
  5. Send it live: On March 12 at 12:00 pm Eastern Time, your alarm will ring to tell you it’s time to share your story online. You can view all of the posts in our social media aggregator on our Advocate 101 web page.
If you want to take your post to the next level, you can:
  1. Tag your members of Congress. Your post can tell them why you #AdvocateforArthritis and to keep an eye out for our Advocacy Champions on the Hill that day.
  • Example tweet: “I #AdvocateforArthritis with the @ArthritisFdn because patients are the ultimate stakeholders in health care. @ SenatorCantwell& @PattyMurray, look out for our Arthritis Advocates on Capitol Hill this March 12!”

    TheMoschitta family #Advocatesforarthritis
  1. Share a Link to our Action Center. Encourage your friends to take action by your side by sharing a link to org/actioncenter. There they’ll be able to pick an action alert of their choice that will allow them to send a pre-formatted letter to Congress,emphasizing the asks from our Advocacy Summit. This will help us amplify the voices on Capitol Hill an encourage members of Congress to support our arthritis priorities.
  • Example tweet: “I #AdvocateforArthritis with the @ArthritisFdn because patients are the ultimate stakeholders in health care. Take action with me by sharing your story with Congress at arthritis.org/actioncenter
  1. Raise Awareness for your Walk to Cure Arthritis Team Page.By posting your reason to #AdvocateforArthritis with a link to your team or donation page, you have an opportunity to reach new people with your message and motivate them to help contribute to research for a cure.
  • Example tweet, “I #AdvocateforArthritis because I am one of the 300,000 children in the United States with juvenile arthritis. You can support my @ArthritisFdn advocacy by joining or contributing to my Walk to Cure Arthritis Team. [Include a link to your team page]”

Post your pictures with our #AdvocateforArthritis hashtag and we will show the world that we are Empowered to Live Yes!

Here are some sample signs to help you brainstorm:
Heidi Barrett Platinum Ambassador
  • I #AdvocateforArthritis because sharing my story gives me hope and purpose in my daily battle with this disease.
  • I #AdvocateforArthritis because people with arthritis deserve a cure.
  • I #AdvocateforArthritis because my child lives with JA & because of the Arthritis Foundation, she knows she/he is not alone.
  • I #AdvocateforArthritis because I need to protect my access to my medications so that I can continue to walk.
  • I #AdvocateforArthritis because I am the 1 in 3 military veterans that came home with this disease.

Related Resources:

stephanie kwiecien

Ambassador Spotlight – Stephanie Kwiecien

Advocating for the arthritis community, says 27-year-old Stephanie Kwiecien, has restored the voice that bullying shut down.

“Advocacy is really important to me because it gave me back the voice I thought I’d lost,” says Kwiecien, who was diagnosed with juvenile rheumatoid arthritis (now known as juvenile idiopathic arthritis) when she was 18 months old. During her elementary and middle school years, Kwiecien’s peers were unfazed by her condition and her teachers were understanding. But high school was different.

Continue reading Ambassador Spotlight – Stephanie Kwiecien

arthritis foundation platinum ambassador assembly

2018 Arthritis Platinum Ambassador Assembly Makes a Big Impact

Scores of the most passionate and vocal champions of the arthritis community recently descended on the nation’s capital to hone their advocacy skills and share their personal stories with each other and with their members of Congress. Attended by nearly 130 participants from 32 states, the Arthritis Foundation’s new Platinum Ambassadors Assembly was held March 12-13.

Platinum Ambassadors are top grassroots volunteers who complete six annual advocacy assignments and raise at least $1,000 to support the Foundation’s mission to conquer and cure arthritis. Forty-eight of our fifty-one Platinum Ambassadors participated in the first-of-its-kind event, along with 25 Junior Ambassadors, young people ages 13 to 17 who speak out for the estimated 300,000 kids in the U.S. who battle arthritis. Also attending were 30 future advocacy leaders, highly-engaged Arthritis Foundation volunteers who have committed to achieving Platinum Ambassador status in 2018.

Continue reading 2018 Arthritis Platinum Ambassador Assembly Makes a Big Impact

2018 Platinum Ambassador Assembly Highlights

Platinum Ambassador Assembly – Highlights from Capitol Hill

Earlier this week, we held our first ever Platinum Ambassador Assembly in Washington, D.C. The Assembly is a meeting for our most highly engaged advocacy volunteers to hone their skills, meet other Platinum Ambassadors from around the country and share their stories with members of Congress. Our Junior Ambassadors and future leaders – volunteers committed to achieving Platinum Ambassador status in 2018 – were also in attendance to learn, share their stories and fight for the over 54 million Americans who are living with arthritis.
Continue reading Platinum Ambassador Assembly – Highlights from Capitol Hill

2017 Advocacy Summit Highlights

Success at Summit! Advocates Meet with Congress as American Health Care Act Released

The 2017 Advocacy Summit was held March 6-7 in Washington, DC, and while the outcome is still developing, we are very pleased with the results thus far.

Arthritis affects people regardless of age or origin, so it was no surprise that this year’s Summit attendees were a mix of all ages from coast to coast. More than 400 people from 45 states attended.
Continue reading Success at Summit! Advocates Meet with Congress as American Health Care Act Released