As a physician, I am an advocate. I am an advocate for my patients individually and collectively, and I am an advocate for my field: pediatric rheumatology. My own experiences as a patient drive me to integrate my patients’ perspectives into my medical decision making, and although my academic training has prepared me to best care for my patients, I have sought out opportunities to broaden my impact.
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Explore This IssueApril 2019
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Unique Challenges Require Collaboration
Pediatric rheumatology poses unique challenges that make advocacy crucial. Physicians alone cannot tackle all the challenges of caring for our complex patients. A therapeutic alliance between patient, family and physician, built longitudinally, allows for optimal care for children with chronic illness. Despite their best efforts to advocate for themselves, patients and families often rely on their physicians to magnify their voice. Yet we, too, must collaborate with key stakeholders to create meaningful change. Legislators write and implement policies that dictate healthcare access, delivery and research funding.
Purple Cupcakes & FITs
A recent encounter with one of my patients highlighted how meaningful individual advocacy efforts can be. She is a precocious 10-year-old girl with lupus. Unlike some of my older patients, she has already learned all about her disease, and knows the names and dosages of all of her medications. After educating herself, she decided to educate others. She baked cupcakes with purple icing (to represent lupus) and walked door to door in her neighborhood. She met each of her neighbors, passing out her purple treats and explained about her illness. She asked each of them to sign a petition acknowledging their understanding.
My patient’s efforts reminded me of RheumPAC.
RheumPAC supports legislators who are supportive of policies that benefit rheumatology patients and care providers. Many fellows in training may wonder if and how RheumPAC is relevant to them. Think about it this way: Lawmakers enact policies that intimately affect rheumatology care providers, from nurses and therapists to trainees and attending physicians. In the past year, RheumPAC contributions have led to important legislation, such as the repeal of caps on Medicare outpatient therapies and further work on step therapy regulations. Other important issues that RheumPAC members advocate for include improved access to care and mitigation of the workforce shortage, which could be helped by expanding loan repayment for trainees to encourage the development of the next generation of rheumatologists.
With more effective communication across disciplines and targeted educational outreach efforts, we can continue to improve the daily lives of our patients. I am motivated to participate in advocacy efforts by one of the American Academy of Pediatrics’ key advocacy tenets—a guarantee that all children have access to quality medical care, including primary and subspecialty pediatric providers.
No More Waiting
Media coverage of healthcare crises often inspires advocacy efforts. But it should not take mainstream media coverage of a crisis to inspire us. Our advocacy efforts should continue day in and day out. Children’s access to care is paramount for pediatric rheumatology. Our field must contend with a shortage of providers and geographic boundaries that may prevent or delay access to a pediatric rheumatologist. Therefore, we must urge for responsible resource allocation as we continue to advocate for our patients. We cannot wait until the next monumental news story to become the voice of our patients. Investments in RheumPAC help physician advocacy efforts translate to lawmakers and policy decisions. As physicians, we cannot remain on the sidelines—politics impact our practice every day. Making an investment as a fellow in training helps lend your voice to these critical issues.
Note: Contributions to RheumPAC are used for political purposes and are not tax deductible. Contributions to RheumPAC must be voluntary and made with personal funds. Federal law prohibits contributions to RheumPAC from corporations, but ask us about the RheumPAC Advocacy Fund, which does support advocacy with soft dollars. Contributions to RheumPAC can be made only by U.S. citizens or permanent resident aliens.
If you are interested in joining your colleagues in rheumatology advocacy, visit the ACR website to learn more about current policy issues and RheumPAC.
Blaine Lapin, MD, is a current third-year pediatric rheumatology fellow at Baylor College of Medicine, Texas Children’s Hospital. He is the fellow-in-training member of RheumPAC, and he has a special interest in community education and quality of life for patients with chronic disease.