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
New Hampshire is one of a handful of states with a special fifth season — Primary Candidate Visit Season. Gaye Jacques decided to take advantage of it by trying to meet as many of the Democrat primary candidates as she possibly could, bringing their attention to the barriers to care people with arthritis face every day. Continue reading How Gaye Jacques Is Making Arthritis a Priority in the 2020 Election
Governor Bevin signs law on March 26, 2019
Imagine you’re diagnosed with a chronic condition like rheumatoid arthritis, which rocks your world and changes life as you have known it. With the help of a good physician, you develop a treatment plan that will hopefully improve your condition and make the tasks of daily life manageable.
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.
“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 email@example.com
The final day of the Arthritis Foundation’s 2019 Advocacy Summit is also the most exciting for Advocates. It’s a day filled with energy, focus and a little bit of nervousness – but those jitters were quickly funneled into fuel for a long day of meetings. Continue reading Advocates Share Their Stories to Empower Change
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!