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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

The Fight for Step Therapy Reform is Personal

Advocacy in Action. What a great day spent with the Arthritis Foundation at the Tennessee State Capitol! On Tuesday, February 4th, my girls and I participated in our first Arthritis Advocacy event. We were there to talk about the TN Step Therapy Reform bills, HB 1866 and SB 1935. This was a great experience for me and I’m so glad I was able to share the experience with my kids. We are already looking forward to returning to the capitol in the future to continue educating and sharing the experiences of arthritis patients with our Representatives!

Continue reading The Fight for Step Therapy Reform is Personal

Let’s Add an Out-of-Pocket Cap in Medicare Part D

My name is Andrea Penny Greenblatt, and I’ve had psoriatic arthritis for over 35 years. I’m also an Arthritis Foundation Advocate.

About four years ago, I joined the Medicare program and faced unexpectedly high out-of-pocket costs on Medicare Part D. Last March, when I participated in the Arthritis Foundation’s Advocacy Summit, I told as many people as I could about my challenge. At that time, there wasn’t much anyone could do since no solutions were being discussed. But I’ve been reading about what Congress is now trying to do to cap out-of-pocket costs, and I wanted to share my story so more patients like me don’t have to suffer.

Since enrolling in Medicare, my overall medical expenses are less than when I was on private insurance. Premiums are lower, and I haven’t had much trouble seeing any doctors and providers. Unfortunately, my initial transition into the program was difficult due to high out-of-pocket costs for my biologic under Medicare Part D. I initially decided to enroll in Part D because my biologic was an injectable medication that was already working well for me, and I didn’t want to disrupt any of my care.

I quickly learned that paying for the Part D drug was going to be financially challenging. The bottom line was that I simply could not afford the coinsurance for the drug that was treating my arthritis. The coinsurance was almost 40%! Exacerbating this issue is the fact that individuals enrolled in Medicare are not allowed to benefit from any form of copayment assistance, which I had been able to access with my prior employer.

After discussing the prohibitive costs of the Part D drug with my doctor, we agreed I should consider transitioning to a physician-administered drug under Part B. I was nervous about abandoning the Part D drug, which had worked so well for me. It turns out my concerns were well-founded: After initial treatment with the Part B drug, I had unpleasant side effects. Since that infusion didn’t work, my doctor decided to try a second infused drug. The second drug seems to be helping, but it’s the only other alternative medication available, and I’m worried it could fail, too.

It’s disappointing Part D doesn’t have any true out-of-pocket cap to limit what individuals pay for medication. I remember my employer health insurance was the opposite: Before enrolling in Medicare, I had an annual limit on my share of costs. Medicare Part B has been a lifeline and helped protect me from financial hardship. I’m fortunate to have a supplemental plan that limits my expenses and helps keep costs more predictable throughout the year.

The addition of an out-of-pocket cap in Medicare Part D is overdue. This change would make Medicare even more successful for me and millions of other Americans. If I had remained on the Part D medication four years ago, my monthly costs would have averaged $600-$700 per month. That’s simply too high for someone on a fixed income, especially when my costs would not be capped each year. My income today only allows for copayments of $200 at the most for my arthritis medication. In addition to an annual out-of-pocket cap, policymakers should consider ways that patients like me can spread costs throughout the entire year. That would help with affordability challenges and might allow me to go back to my Part D drug, which had worked so well to keep my disease at bay when I first joined Medicare.

There are days when I wish I could have afforded the Part D drug that was making a difference in my health. It turns out I’m not the only one: The Arthritis Foundation recently completed a survey showing that other arthritis patients have experienced the same thing – forced to transition from Part D to Part B due to affordability issues. If you’ve had a similar experience on Medicare, sharing your story is so important. Your story helps raise awareness about access and affordability issues across the country. Here are some actions you can take: