Close to the Finish Line: Funding our JA Kids’ Futures

By Stephanie Livingston, Arthritis Foundation Advocacy Manager

They say first impressions last a lifetime. The same applies to a child’s first interactions with a pediatric rheumatologist. After finding a diagnosis, it’s vital to work quickly as a team to find a treatment plan that slows disease activity as much as possible during developing years.

I was diagnosed with juvenile arthritis (JA) when I was 12 years old, but there were hints of arthritis activity far earlier that were misunderstood as sports injuries. Misdiagnosis is common with JA, since pain and swelling can be misattributed to growing pains, injuries and other kid-related activities. Now as a young adult, I’m thankful for the impact my pediatric rheumatologist had on my early years with arthritis. I grew up in the San Francisco Bay Area, where there are a handful of board-certified pediatric rheumatologists. But even still, it can be difficult to get an appointment, and those appointments can take time away from school or work.

There are nearly 300,000 kids living with juvenile arthritis in the United States, but fewer than 450 board-certified pediatric rheumatologists available to treat them. That means many kids do not have access to a doctor who specializes in treating children with rheumatic diseases, and many patients travel for hours just to see their doctor. Some states that don’t have any pediatric rheumatologists, like Montana, Idaho and Wyoming, require driving more than 250 miles one-way for a doctor’s appointment. This means significant time away from school for the child, and time away from work for a family.

The Pediatric Subspecialty Loan Repayment Program (PSLRP) seeks to address this substantial workforce shortage. The PSLRP would provide tuition loan repayment to new doctors in subspecialties who choose to practice in underserved areas. Advocates have raised their voices in support of the PSLRP for years, and their hard work just paid off!

The House Labor, Health & Human Services Committee (LHHS) recently released a spending bill and accompanying report that includes funding proposals for a variety of programs and agencies, including the CDC Arthritis Program and PSLRP. The PSLRP has never been officially funded before, so this is a monumental step forward.

This funding is a critical step toward increasing vital arthritis program funding, but the work isn’t over. The Senate Appropriations Committee still needs to negotiate and compromise on their own spending bill to arrive at a final version before funding is finalized. We need you to call on your senators to fund the Pediatric Subspecialty Loan Repayment Program at $50 million to ensure kids with JA can access the care they need. Take action in five minutes or less by visiting Together, we can ensure a better future for kids with JA.

Advocating During a Pandemic: Advocacy and Arthritis Go Hand in Hand

Patrice Johnson, Platinum Ambassador, CA
California State Advocacy Committee Member | Live Yes! Online Community Forum Moderator

The COVID-19 pandemic has radically affected all our lives. On the advocacy front, Arthritis Foundation Advocates and Ambassadors were concerned that we could not meet in person with our legislators to advocate for our priorities, especially as the pandemic made legislative changes even more necessary. Many of us came to the solution of meeting virtually. Continue reading Advocating During a Pandemic: Advocacy and Arthritis Go Hand in Hand

LA Step Therapy Win

The Arthritis Foundation is pleased to announce that Gov. John Bel Edwards has signed HB 263 into law as Act 181. This law strengthens protections for Louisianans who are living with arthritis and cements Louisiana as having one of the strongest step therapy laws in the country.

Act 181 was prioritized and passed during the COVID-19 pandemic and will improve the state’s existing step therapy law. Also known as “fail first,” step therapy is a process that forces patients to try and fail drugs insurance companies choose, before the patient gets to use the medication their doctor originally prescribed. This may occur even if you are already taking a medication and doing well on it.

Our Advocates’ stories powered this success and will help Louisianans like the Floyd family — who have endured burdensome step therapy requirements for the treatment of their daughter, Emily, who was diagnosed with systemic juvenile idiopathic arthritis at the age of 9.

Emily and Maria Floyd, Arthritis Foundation state advocacy chair from Lafourche Parish

“I want to thank State Rep. Mike Huval for the introduction of HB 263 to update Louisiania’s step therapy law. My hope is renewed for my daughter, who suffers from a form of juvenile arthritis, so that she will not have to unnecessarily continue to try and fail on multiple drugs not prescribed by her doctors, which would end up causing her greater joint damage. I know this bill will make a difference for so many families like ours.”

Our Advocates were persistent and informed state legislators about the importance of this measure, which received a unanimous vote in the Senate and a near-unanimous vote in the House. Now that Act 181 has been signed, Louisianans will have timely access to the medications they need, when they need them.

If you are a Louisiana resident, send a letter thanking Gov. Edwards for his support.

If you have experienced step therapy, or “fail first,” we want to hear your story. Share your experience with our Story Bank tool.

2020 Virtual Advocacy Leadership Retreat: Key Takeaways From 20 Years of Advocacy

Advocacy Champions joined Advocacy staff online for the first Virtual Advocacy Leadership Retreat on March 10, 2020. Volunteers developed the entire program before COVID-19 made an in-person event unsafe. They designed keynotes, breakout sessions and “how to” advocacy posters in order to teach one another about advocacy leadership. Keeping programming true to the volunteer leaders’ plans while switching to a staff-run webcast was a unique challenge. Continue reading 2020 Virtual Advocacy Leadership Retreat: Key Takeaways From 20 Years of Advocacy

2020 Virtual Advocacy Leadership Retreat : The Power of Presence

I was full of nerves and excitement a year ago when my son and I traveled to Washington, D.C. to attend an Advocacy Summit. My son decided to become an Arthritis Foundation Junior Ambassador, and to support him I signed up as an Ambassador. I had no idea what to expect, but I was hoping to help my son find his voice. The funny thing was, I found mine. Continue reading 2020 Virtual Advocacy Leadership Retreat : The Power of Presence

2020 Arthritis Advocacy Leadership Retreat: What It Means for You

Earlier this week, nearly 100 of the Arthritis Foundation’s most committed Advocates and Ambassadors tuned in to our Virtual Advocacy Leadership Retreat. Coronavirus stopped us from gathering in person. But it couldn’t stop us from unleashing the power of our Advocates to influence members of Congress from afar. Continue reading 2020 Arthritis Advocacy Leadership Retreat: What It Means for You