A Rheumatology Fellow Shares Her Journey to Capitol Hill via the ACR’s Advocacy 101 Program

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In summer 2017, I was a few months post-partum when I received an email announcing applications for the ACR’s Advocacy 101 program. It would take only a few days, but I asked my division director if it would be worth the time commitment. He questioned the career benefits of advocacy, but encouraged me to apply my outspoken personality toward improving patient care.

More than one year later, I continue to advocate for arthritis and remain enthusiastic about improving access to quality medical therapy. Although advocacy does not provide financial reimbursement, per se, the benefits to our patients, our subspecialty and, ultimately, our careers are indisputable.

The Program Explained

The Advocacy 101 (A101) program occurs in conjunction with Advocates for Arthritis (A4A) during September (i.e., Rheumatic Disease Awareness Month) and serves as a boot camp for fellows in training and fellowship program directors to educate and engage participants in healthcare policy and patient advocacy. The program begins with a casual welcome reception, allowing fellows a chance to network with the planning committee, as well as other fellows from pediatric and adult training programs. The first day is packed full of lectures, designed to educate advocacy newbies on the major components of healthcare policy and the challenges we face as clinicians. The day concludes with a large networking dinner, including A101 participants, members of the Government Affairs Committee (GAC), RheumPAC and the ACR Executive Committee.

The second day continues with educational lectures as part of the larger A4A program, which includes former A101 graduates, practicing rheumatologists, members of the interprofessional team (e.g., physician assistants, nurse practitioners, clinical nurse specialists, certified registered nurse anesthetists) and patient advocates. The latter half of the session is interactive, allowing advocates an opportunity to meet their team members (often grouped by state), with whom they will spend the next—and final—day advocating on Capitol Hill.

The GAC preselects three major issues to present to lawmakers, and ACR staff members assist in scheduling meetings with members of Congress. The A101 and A4A programs prepare advocates for their big day on the Hill by reviewing expectations and prepping them on the three issues at hand. Although it seems overwhelming, committee and staff members work diligently to ensure all advocates are well prepared to discuss the current issues with legislators and fight for better patient care.

This Year

This year, we focused on step therapy legislation, dedicating medical research funding to arthritis in the Department of Defense’s (DoD’s) Congressionally Directed Medical Research Program and improved access to osteoporosis testing in Medicare. Specifically, we advocated for co-sponsorship of H.R. 2077 (https://tinyurl.com/y8zkm39b), a proposed law that seeks exceptions to step therapy and provides a reasonable and clear timeframe for insurance companies to assess the patient prior to denying medically necessary therapy, and we asked our senators to introduce companion legislation. This initiative piggybacks on our recent success within the U.S. Senate following a 98 to 2 vote on the pharmacy benefit manager gag clause bill, which prohibits Medicare insurers from banning pharmacies to inform patients that their prescription drugs would be cheaper if they were to pay out of pocket rather than through their insurance. This win is a huge leap toward drug-pricing transparency. In combination with step therapy legislation, we aim to progress toward individualized therapy for our patients (i.e., treat the patient and not the insurance policy).

As a pediatric trainee, I know very little about osteoporosis, & yet I felt it my duty to fight for better reimbursement. … Why? Because one day my patients will grow older, & steroids, frequently used in the treatment of juvenile rheumatic disease, increase the risk of bone demineralization, which can lead to osteoporosis over time.

Additionally, we asked for a line item to be added to the fiscal year 2020 budget that dedicates appropriated DoD re­search funds to arthritis and for co-sponsorship of the H.R. 1898/S. 3160 bills (https://tinyurl.com/yalbk3o2 and https://tinyurl.com/ybavdtp4) to restore a sustainable Medicare reimbursement for dual energy X-ray absorptiometry scans, thereby preserving access to osteoporosis testing, prevention and treatment services.

You Should, Too

As rheumatologists, we share a common goal: to provide access to quality medical care for our patients with rheumatic disease. Regardless of age, healthcare policy affects all of our patients. Trust me, as a pediatric trainee, I know very little about osteoporosis, and yet I felt it my duty to fight for better reimbursement for a relatively inexpensive screening test seldom used in pediatrics. Why? Because one day my patients will grow older, and steroids, frequently used in the treatment of juvenile rheumatic disease, increase the risk of bone demineralization, which can lead to osteoporosis over time.

I know very little about adult rheumatic diseases, but I was fortunate to have a friend and colleague (Amanda Schnell, MD, a second-year fellow in adult rheumatology at the University of Alabama, Birmingham) fill in the knowledge gaps. She and I participated in A101 together in 2017 and represented our state, Alabama, again this year. Through A101, we formed both a friendship and professional partnership, thus creating an ideal team dynamic in our advocacy efforts.

Looking back, I am thankful for the knowledge, experience and friendships gained through participation in A101. In addition to the educational experience and the thrill of speaking to Congressional representatives, the event affords an opportunity to meet colleagues from other institutions who share a common passion for improved patient care and encourages mingling with leaders within the ACR, an opportunity rarely available to fellows in training.

I am excited to return to D.C. each year as part of Advocates for Arthritis and continue to advocate for quality medical care for all of our patients. I encourage all trainees to seek out opportunities to get involved with advocacy and continue these efforts as their careers advance.

With enthusiasm and dedication, anyone can fight for a cause. Advocacy 101 molds this passion into a strong, successful advocate. I strongly recommend fellows seize the opportunity to complete A101, with the next session slated for 2019. Information on how you can participate in 2019 will be posted on the ACR’s website (https://www.rheumatology.org/Advocacy/Advocates-for-Arthritis) when available. In the meantime, peruse the ACR’s Legislative Action Center (https://www.rheumatology.org/Advocacy/Legislative-Action-Center) for fact sheets and information on the important topics discussed here and other key issues.

Courtney B. Crayne, MD, is a third-year pediatric rheumatology fellow at the University of Alabama, Birmingham.