Fight for Change: 2 ARP Members on Why Advocacy Is Important to Them

The Rheumatologist invited members of the ARP to tell us why advocacy is important to them. Two members who currently serve on the ACR Government Affairs Committee provided important perspectives on why they became involved.

Andre Smith, Practice Manager

Early in my career as a rheumatology practice manager, my focus primarily centered on customer service and the financial aspects of running a practice—until the day I met Dorothy.

Dorothy, an employee at a local grocery store, had been paying into her employer’s health insurance plan. Living with rheumatoid arthritis, Dorothy had tried numerous therapies without consistent positive outcomes. However, there was a turning point when her provider prescribed a particular biologic that truly changed the game for her. Unfortunately, everything took a heartbreaking turn when her insurance plan modified its formulary, leaving Dorothy without coverage for the biologic.

Until that moment, I had never fully comprehended how changes in payer policies could profoundly impact an individual’s quality of life. I felt utterly powerless as I witnessed Dorothy’s tearful explanation of how this medication had been a game-changer for her and how she couldn’t afford to pay for it out of pocket. “I’m just an assistant manager at a grocery store,” she said. “I don’t understand how the doctor can prescribe something that works, but my insurance tells me I can’t have it.” It was a deeply frustrating and unjust situation.

I handed Dorothy a box of tissues and assured her I would do everything in my power to help. In reality, I had no idea where to begin. I was filled with outrage and a sense of injustice on behalf of Dorothy, who had done nothing but follow her doctor’s orders and take her prescribed medication. Determined to make a difference, I started by calling her insurance plan.

Andre Smith

Despite my deep frustration at being placed on hold and having to repeat “REPRESENTATIVE” after an endless series of prompts, I calmed myself down when I finally had a human being on the line. Maintaining an even tone, I spoke from the heart, advocating for Dorothy. I made it clear that the situation was unacceptable.

As a medical biller and coder, I was no stranger to appealing medical claims with payers. However, this fight was different. It was a fight to improve the quality of life for individuals like Dorothy. Advocating for patients brought a unique kind of satisfaction that resonated with my purpose in healthcare.

That day marked the beginning of a journey filled with battles against various policies that hinder or deny patient care. I joined different coalitions dedicated to patient advocacy and, fortunately, had the opportunity to become part of the ACR’s Government Affairs Committee. This platform has allowed me to have a more significant impact in the fight to improve patient access to care.

My experience with Dorothy ignited a passion within me, propelling me to become a fierce advocate for those facing barriers to necessary treatments. Every battle I’ve fought since then has reinforced my commitment to championing the rights of patients and improving healthcare outcomes. I am determined to make a difference, one policy change at a time, to ensure that patients like Dorothy have the access and support they deserve.

Brenda Frie

Brenda Frie, EdD, OTR/L, CHT, Occupational Therapist

Serving for the past three years on the ACR Government Affairs Committee has been an honor and a privilege. It is an honor to be part of an interprofessional team that advocates for reducing health disparities and improving healthcare access. The ACR’s support of an interprofessional approach is one of the reasons I joined the ARP. As an occupational therapist, I value including clients, administration, physicians, nurses, and allied health professionals in united goals focused on improving the lives of those living with chronic disease.

I have gained most of my advocacy experience on the Government Affairs Committee. The committee meets monthly, providing updates on national and state legislation influencing practice. The committee updates the ACR’s health policy statements and decides which legislation to focus on during the spring and fall visits to Washington, D.C. The day before the Hill visit, advocates receive training and support materials, a confidence booster.

The ACR works with a company called Soapbox to coordinate Hill visits with state legislators. A mixed team of professionals is assigned by geographic location and paired with senators and representatives. The interprofessional approach to Hill meetings allows members to share their personal stories about how legislation influences them. As an occupational therapist, I have found stories about how rheumatic disease affects everyday life tasks of value.

Last fall, I was on a team with two clients who told stories of how step therapy and copay accumulators impacted them personally due to difficulty managing disease symptoms and increased cost burden. This spring, I was paired with a clinic administrator who directly addressed the need for an inflationary adjustment to the Medicare fee schedule and increased resident training positions.

I have found legislators and their staff very receptive to clinical and client stories of how legislation influences their constituents. 

It is a privilege to advocate for those most in need. I am grateful to have the opportunity to gain a working understanding of the legislative process with other health professionals and clients. This opportunity has allowed me to view legislation beyond my scope of practice to address health disparities comprehensively. I owe a special thank you to many in the ACR and the Government Affairs Committee who support advocacy training and the fly-in, and work behind the scenes to support legislation to improve healthcare outcomes.

Get Involved

If you can relate to these stories and want to get involved too, there is always room for new volunteers. You can volunteer to serve on the Government Affairs Committee or another ACR/ARP committee. If that sounds overwhelming, you can still get involved in lobbying for issues important to you by contacting both state and federal legislators as you have time. The ACR makes this easy. You can also get involved in your state or local rheumatology society or donate to RheumPAC to really stretch your advocacy efforts.

Andre C. Smith is a regional operations manager for PanCare of Florida Inc., Panama City Beach. He started in rheumatology in 2010 in a 1,200 square foot medical suite with one provider and two exam rooms, which grew into an 8,000 square foot facility with an 18-chair infusion suite.  He served on the National Organization of Rheumatology Management Board of Directors for five years, as well as the ARP Practice Committee, and the British Society for Rheumatology. He currently serves on the ACR Government Affairs Committee.

Brenda Frie, EdD, OTR/L, CHT, is currently employed by M Health Fairview Rehabilitation Services, Minnesota, working in hand rehabilitation on a casual basis. In 2020, she retired from teaching at St. Catherine University, St. Paul, Minn. Her involvement in rheumatology began while she was working with hand therapy clients and later evolved to working with students in the community developing self-management programming for those living with chronic disease. For ARP, she has served on the E-Learning Committee, co-hosted the ACR Convergence Interprofessional Community Hub and currently serves on the Government Affairs Committee.