I started having symptoms of Juvenile Rheumatoid Arthritis at just 14 years old. I knew something was wrong when I started having swelling in my knee. It took two years of misdiagnoses and treatments before being diagnosed with juvenile rheumatoid arthritis.
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
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
My name is Steven Schultz, and I’m the state director for advocacy and access at the Arthritis Foundation. Last fall, I had the great pleasure of joining Rep. Ami Bera, who represents the Sacramento area in Congress, for a Walk With Ease session. Continue reading It’s Easy to Walk With Ease
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
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!
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:
- Share your story through the Arthritis Foundation! Your experience keeps us informed and helps us advocate together. The Live Yes! Arthritis Network brings us all together.
- If you are unable to afford your prescription drugs, patient assistance programs may help. Visit the Arthritis Foundation’s Access to Care toolkit for help navigating all aspects of health coverage.
- Think about your options during open enrollment this year – the Arthritis Foundation has a great blog from one of their Helpline social workers talking about important tips and tricks to make sure you choose the right plan.
In October, I joined forces with fellow Arthritis Foundation advocates to testify on step therapy reform. We traveled to the Massachusetts State House in Boston and shared our stories with legislators. Testifying at a bill hearing may seem intimidating, but here are my tips for making it less scary.
Legislators want to hear from their constituents. They appreciate you taking the time to come and weigh in on a bill that matters to you. It if helps you, bring notes to reference.
Remember, its impossible for legislators to know about every bill being debate, so it is our job to educate our legislators on what is happening to the millions of Americans with arthritis.
Legislators don’t expect you to know everything about the bill. In the unlikely event that they ask you a question and you don’t know the answer it is perfectly appropriate to say “I am not sure, but will follow up with you to get the answer.” Then the staff from the arthritis foundation can help find the answer!
No one knows your story better then you do.
That is why you are at the hearing to testify; to share your story and to show how the legislation can impact millions of patients just like you.
You have the chance to make a difference and you CAN do it! With these tips, you’ll be ready to share your story and advocate on legislation that would make a difference to the arthritis community. Remember, elected officials are just like you and me!
You can take action today by sending a message to your legislator about federal step therapy reform via the Action Center. With just a few minutes, you can let your elected officials know that you support breaking down barriers to care for people with arthritis.
Tricia’s story is like many others trying to make arthritis coverage more affordable
My name is Tricia Mershon, and I live with my family in Corona, California. At the age of 3, my daughter, Rachel, was found to have a dysfunctional immune system. Her tiny body failed to mount a response to infection, and various disease specialists were able to document the phenomenon but unable to pinpoint a cause.
Just before ninth grade, Rachel’s fingers curved into a funny “s” shape and looked different than those of anyone else. When she began having pain in her feet, knees and hips, which sometimes made walking difficult, Rachel was promptly referred to rheumatology, and we found the real culprit. At 14, Rachel was diagnosed with juvenile idiopathic (rheumatoid) arthritis. She began aggressive treatment to halt the progression of this insidious disease. Continue reading How to Change Unreasonable Insurance Rules
Let’s face it: out-of-pocket costs for patients with chronic diseases like arthritis are consuming an ever-growing share of household spending. Lowering drug prices has been a central priority of Congress and the Administration this year, and while a lot of attention is paid to drug companies and insurers, the impact on the patient often gets lost. There may be a lot of chatter about list prices, rebates, and other technical terms, but at the end of the day the health care price that matters most to patients is the one coming out of their own pocket. Continue reading Out-of-Pocket Costs: An Out-of-this-World Problem