All posts by Arthritis Foundation

Taking Steps toward Patient Centered Reforms | Safe Step Act Introduced Today!

My name is Katie Roberts and I’ve lived with a severe and debilitating form of psoriatic arthritis for nearly 40 years, and psoriasis, a painful skin condition, for nearly 30 years. I’m an Advocate for Arthritis and the Chair of the Maryland Advocacy committee because I’m passionate about sharing my story to break down barriers to care, especially step therapy.

Katie Roberts

At an appointment with a rheumatologist at age 17, I was told I would likely not live long enough to see my 21st birthday – my body was slowly shutting down from years with an autoimmune disease. It was more than the arthritis and psoriasis. The autoimmune disease had started to affect my digestive system, bladder, liver, kidneys, heart, and lungs.

My doctors prescribed a treatment regimen that was the best of what was available at the time. This allowed me to live past my prognosis, but it did not put me in control of my disease. My medical team had prescribed countless drugs, and I even participated in 3 experimental drugs protocols at NIH.

Later that year, in 2002, a biologic drug, was made available through a study at NIH. Within 3 weeks, I was out of a wheelchair, and within 6 weeks was walking unassisted. My psoriasis went from 80% body coverage to less than 5% body coverage within 8 weeks.

It was my miracle drug. It literally saved my life. I was able to join the workforce again and go on to have a very successful professional career. Little did I know then that all the progress that I made would be thwarted years later by step therapy.

Roberts Family

I had been stable on my biologic treatment for years, with coverage for my biologic through my employers’ private insurance. In the middle of a plan year, my insurer sent me a letter informing me my biologic injections would no longer be covered under my plan until I went through “step therapy protocols”. They told me that I would have to try and fail a less-costly alternative treatment before they would to cover my biologic.

My insurer’s decision to force me through burdensome step therapy protocols not only interrupted my life, but it brought my life to a standstill. This step therapy decision was overly burdensome in three major ways:

  1. The process was not transparent — there were no stipulations on how long I would have to try and fail to be on any particular step medication.
  2. My doctors did not have any power to appeal or override the decision – my doctors tried to fight and help appeal the insurance decision to no avail.
  3. My health plan did not take my medical history or my doctor’s medical opinion into account – it didn’t matter than my biologic was helping to control both my arthritis and my comorbidities like psoriasis and Chron’s disease, my insurer still wanted to try the lower cost alternative.

Within 4 weeks of going off treatment, I was back in a wheelchair – that’s just four weeks to go from a fully functioning active adult to wheelchair. That’s how fast this disease can progress if not stabilized. Unfortunately, I was forced to continue this step therapy journey for ten months – leading to 14 surgeries, countless doctors visits, missed time from work, and ultimately health care costs that far exceeded the price of my biologic treatment.

Earlier today, Congress introduced federal legislation called the Safe Step Act (HR 2279) that will reform step therapy protocols nationwide. The three reforms proposed in the legislation will make step therapy a more transparent process, that gives doctors the power to override step therapy decisions when medically appropriate, and that takes into account personal medical history. Had this bill been law in 2008, I would have had the power to avoid the burdensome step therapy protocols I encountered.

I need your help in teaching Congress about the importance of step therapy reform, and calling on our legislators to sponsor this important piece of legislation. Take five minutes to send your Member of Congress your support.

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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

VA Gov. Northam Signs Step Therapy Reform Bill Into Law

VA Gov. Northam Signs Step Therapy Reform Bill Into Law

On Tuesday, March 12, Virginia joined the ranks of 22 states that have passed legislation to curb step therapy. House Bill 2126, which was signed into law by Virginia Gov. Ralph Northam, reforms step therapy, or “fail first,” insurance protocols that force patients to try and fail an insurer-preferred medication before the medication their doctor originally prescribed. This legislation places important guardrails to protect patients from the inappropriate use of burdensome step therapy protocols.

Patients and providers have been working hand in hand on reforming step therapy protocols in Virginia since 2016. Countless touchpoints with legislators have gotten us across the finish line, including letters sent to legislators, op-eds published in local newspapers, coalition-based initiatives through Fair Health Care VA and even state legislative days with in-person legislator meetings in Richmond.

Dr. Harry Gewanter, Arthritis Foundation Ambassador and chair of the Virginia advocacy committee, played an instrumental role in the success of this bill. Of the step therapy win, Dr. Gewanter says: “This legislation will help patients receive appropriate therapies when their unique circumstances need personalized treatment and ensure that the patient-physician relationship remains at the center of care decisions.”

The Arthritis Foundation thanks all legislators who have supported the bill, specifically Delegate Davis, who has championed this bill for four years. You can share your gratitude with the legislature as well!

If you have a step therapy story, we want to hear from you. 

You can learn more about advocacy and amplifying your voice by becoming an Arthritis Foundation Advocate! Sign up today!

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2019 Advocacy Summit – A Busy First Day Readies Advocates for a Day on Capitol Hill

2019 Advocacy Summit – A Busy First Day Readies Advocates for a Day on Capitol Hill

Yesterday, more than 300 Advocates from all parts of the United States came together in Washington, DC, filled with fire as they get ready to voice their personal stories to make real and meaningful changes for the arthritis community.

The Arthritis Foundation’s 2019 Advocacy Summit kicked off on Monday, March 11, 2019, with an exciting welcome by Foundation President and CEO Ann M. Palmer. The day included motivational and educational breakout sessions where Advocates learned about key legislative asks to support top issues affecting the arthritis community’s access to affordable care. They also learned some important tips and tricks for their Capitol Hill meetings and had the opportunity to participate in a Live Yes! Connect Group demonstration.

The intensive day of training and information concluded with the Excellence in Advocacy Awards Dinner. Seventeen-year-old Ethan Berkovitz from Solon, Ohio, was awarded the Emerging Leader in Advocacy Award for his continued efforts to raise awareness of the disease by actively advocating on Capitol Hill and the Ohio Statehouse, as well as being the go-to team captain for the Walk to Cure Arthritis and Jingle Bell Run.

 

Karen Anderson of Santa Barbara, California, was awarded the Edward M. Kennedy Advocacy Leadership Award for her many years of advocacy on behalf of the Arthritis Foundation. Karen is attending her 11th Advocacy Summit and has been a Platinum Ambassador since its inception. She began volunteering for the Arthritis Foundation after her daughter, Kristin, was diagnosed with systemic scleroderma, one of the over 100 forms of arthritis, at the age of 15. Karen’s introduction to the Foundation was at a JA Conference, and since then she has been a passionate volunteer at the local, regional and national levels. She has served as Walk to Cure Arthritis chair, advisory board chair, regional public policy and advocacy chair and as a member of the national public policy committee.

Representatives Brad Wenstrup (R-OH) and Raul Ruiz, MD (D-CA), received the Advocacy Leadership Award for fighting to reform step therapy requirements nationwide and break down barriers to care for people with arthritis.

A record 70 Platinum Ambassadors were also recognized for going above and beyond the call of duty by accomplishing a challenging list of advocacy needs, all while raising funds to support our efforts to conquer and cure arthritis.

At the end of the day, Advocates were preparing themselves for hundreds of meetings they have in store with members of Congress. During these meetings, legislators will be asked to discuss legislative priorities like reforming burdensome step therapy practices and making access to vital treatments easier and more affordable. They will also be urged to support funding for arthritis research at the Department of Defense and to join the Congressional Arthritis Caucus – a group for members of Congress that serves as a clearinghouse for information regarding arthritis and its devastating toll on our population and economy.

Join us on March 12 at 12:00 p.m. ET to help amplify the impact of our in-person meetings with legislators by participating virtually in our #AdvocateforArthritis social media campaign. Print out this sign and, in one sentence, written large and legibly, tell us why you #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:

Arthritis 101 Hill Briefing Introduces a New Congress to Arthritis and the Military

On February 13, 2019, dozens of Capitol Hill staffers joined the Arthritis Foundation, the American College of Rheumatology and other patient organizations for a special Arthritis 101 briefing on arthritis and the military. Approximately one in every three U.S. veterans has doctor-diagnosed arthritis, while the general population stands at one in four, about 25 percent. Continue reading Arthritis 101 Hill Briefing Introduces a New Congress to Arthritis and the Military

Importance of Step Therapy Reform

Step therapy, also known as “fail first,” is a tool used by insurers that requires patients to try a less expensive treatment, or series of treatments, before they can access the drug originally prescribed by their physician. Overly burdensome step therapy requirements can jeopardize the patient-provider relationship and unnecessarily prolong ineffective treatment, preventing patients from immediately starting, or in some cases continuing, to access the most appropriate treatment recommended by their doctor. Continue reading Importance of Step Therapy Reform

Connecting | More than Ever Before! Celebrating the Record Breaking 70 Platinum Ambassadors

A record number of individuals achieved the Arthritis Foundation’s highest advocacy honor in 2018 and became Platinum Ambassadors. At the 2019 Advocacy Summit, March 11-12, in Washington, DC, participants will be able to connect with the 2018 cohort of 70 Platinum Ambassadors who will be recognized for their outstanding advocacy achievements on behalf of the arthritis community. Registration for the Advocacy Summit closes on February 4 – register today! Continue reading Connecting | More than Ever Before! Celebrating the Record Breaking 70 Platinum Ambassadors

Step Therapy Reform Moves Ahead in Georgia

On Wednesday, January 23, a group of Georgia Advocates gathered at the state capitol building to talk to legislators about step therapy reform. The event was attended by Advocates from across the state,including a mother and daughter who drove from three hours away to talk about the challenges they’ve faced getting access to their medications. The day included a visit from the bill sponsor, Rep. Sharon Cooper (R-43), a brief overview of current step therapy practices and role playing, as well as meetings with some of Georgia’s legislators.

Our Advocates talked to legislators about step therapy, which is an insurance practice that requires patients to use a lower-cost drug before permitting more expensive treatments, despite a physician’s recommendation. Rep. Cooper shared with our Advocates that her bill will create guardrails, allowing a physician to override a step therapy request if the requested medication will negatively react with a medication the patient is already taking, or if the patient has previously tried and failed that drug.

The bill has just been introduced and will go through the Georgia House and Senate chambers for review and votes. Please take a moment to take action by reaching out to your legislators and asking them to support step therapy reform in Georgia.

 

 

 

 

 

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