Complain Constructively: It’s Called Advocacy

One evening a few years ago, my husband, an oncologist, sat down at the kitchen table and vented his annoyance at a poorly coordinated hospital transfer. I sympathized, then shared my own frustrating tale of a disagreement with a cavalier orthopedist and a questionable operation for a patient with gout. After agreeing that surgeons can be a challenge, he replied with a story about an overbearing wife of a myeloma patient with a swollen metatarsophalangeal joint. As I was about to regale him with my next lament, my 11-year-old looked up from his computer in the next room and casually interjected, “You guys complain a lot.” He put on headphones, literally tuning us out, and wandered off. I looked at my husband. Yes, I thought, we do complain. One could say we were pretty fantastic at it. Most doctors are. But why?

Dr. Birnbaum

In the day-to-day practice of rheumatology, it sometimes feels like we don’t have a voice. Despite our enormous personal responsibility for our patients’ well-being, we must yield to the demands and rules of various autocracies: insurance companies, pharmacy benefit managers (PBMs) and our healthcare systems. At the same time, one of the hallmarks of our democratic society is citizens having a voice in their government. Caught between our sense of responsibility and our lack of control, we may feel overcome with moral injury as we encounter situations in which we feel forced to act against our beliefs. We grow frustrated and disillusioned. We burn out. Complaining serves as a coping mechanism. Most of us are fluent in this dialect of discontent and enjoy bonding over shared frustrations. The catharsis, however, is fleeting; it is the coming up for air before diving back under. There is a way to complain constructively: advocacy. I believe advocacy is the antidote to moral injury and the key to wellness.

Finding Agency

Advocacy is a reminder that there are democratic controls that we can access beyond the autocratic forces that constrain us. When done right, we enact change. In 2020, I joined a non-partisan group (Vot-er.org) that encourages patients to register to vote and to consider voting by mail. I wore a badge with a QR code that patients and staff could scan to register. This simple action was transformational for me. I stopped feeling so angry about the state of affairs in our country. I felt hopeful and empowered. The badge gave me a sense of agency and purpose to pass on to my patients. It helped combat the helplessness and despair I saw in many doctors around me. My unique voice as a physician mattered, and I was talking about something with my patients that felt bigger than individual treatments. It was energizing, and I wanted to do more.

I joined the ACR’s Government Affairs Committee (GAC). The committee develops and reviews policies most important to rheumatologists and our patients. We work to change payer and PBM policies regarding step therapy and nefarious co-pay accumulator programs, which are increasingly used by insurance companies to prevent copay assistance from counting toward a patient’s deductible or out-of-pocket maximum.

We also take our complaints to Capitol Hill twice a year to address our concerns. As doctors, we can offer unique insights into day-to-day practice and educate those responsible for the law that affects us. One could say we spend the day complaining, but we are speaking out against practices and policies that are unjust and harmful, and educating lawmakers about these challenges—in other words, we are advocating. Learning about these issues—even those that did not personally affect me—and working in the company of others dedicated to improving our field and our patients is inspiring.

Positive Outlets

Now, when a patient has trouble accessing medication, I don’t shrug and commiserate over the state of our country’s medical system—I encourage them to call their representatives to share their stories. I am surprised at how many people respond positively to this suggestion. Every one of us has a voice, and we should use them.

It is a privilege to care for our patients and work toward change. So here is my challenge to other ACR/ARP members: The next time you are frustrated, combat that feeling with advocacy and let me know how you feel afterward. Don’t get me wrong; I still complain. But I do try to minimize it (and do it out of my kids’ earshot). And I look for positive outlets for my complaints. this past spring, I wrote an op-ed about the effect the Dobbs v. Jackson Women’s Health decision will have on our rheumatology patients. My now 15-year-old cut it out and framed it for me.

Anyone who can complain can advocate. That is each of us.

Here are some suggestions:

• Call your legislators and review your concerns about Medicare reimbursements, the cost of copays and telemedicine coverage. They do want to hear from us.
• Donate to RheumPAC—any amount helps.
• Make sure you are registered to vote—doctors are 9% less likely to vote than the general population.
• Join Vot-ER, wear a badge and encourage your patients to vote.
• Tell the ACR about your concerns. We want to hear from you.
• Learn more about advocacy in the upcoming Advocacy 101.

Belinda Birnbaum, MD, is a rheumatologist at Bryn Mawr Medical Specialists Association in Pennsylvania and a member of the ACR Government Affairs Committee.