What Does Advocacy Mean to You?

Published: April 7, 2023

A few months ago, I traveled with my N-95 and a stethoscope to an immigrant detention center in a rural community in central Virginia. Inside this center, hundreds of civil detainees simultaneously experienced COVID. COVID spread quickly after 74 transferees were accepted all at once into the facility despite not having the capacity to quarantine, isolate, or adequately screen the transferees at intake. Detainees were packed into poorly ventilated dorm rooms, sleeping inches from one another without sufficient personal protective equipment.

Nearly a year after the outbreak, I interviewed and examined patients whose lives were completely upended due to long COVID. For many, the mental and physical distress experienced did not end when their acute illnesses resolved. As an example, one young man told me he went from being able to play 90 minutes of competitive soccer each day in the facility fields to having to take multiple 3-hour naps a day, exhausted by the walk back to his room after meals.

The COVID pandemic has brought increased awareness of injustices and disparities that exist all around us. I examined patients in this facility to document and share the experiences of a population in need of advocates. Through legal action directed by the Legal Aid Justice Center, we were able to advocate for changes needed to get these patients the care they needed and put in place precautions that will hopefully prevent future outbreaks from ever happening again.

Several times a year, I teach a seminar on advocacy to colleagues at various levels of medical training at the University of Virginia. I start each session with this open-ended question: What does advocacy mean to you? Over the years, I’ve heard hundreds of answers and have learned that we each define advocacy in our own ways. But this is clear: Advocacy has become our collective tool to combat injustices and reduce disparities.

We can advocate for our patients, colleagues, community, and ourselves. We can advocate through clinical care, process improvement, writing grants, building programs, developing partnerships, conducting research, writing op-eds, and influencing policies. Advocacy can sometimes feel mundane (eg, succeeding in a peer-to-peer to get your patient insurance coverage for a needed medication), while other times can feel aspirational (eg, testifying in front of the federal legislature).

While advocacy can take many forms, at the foundation of nearly every effective advocacy effort is listening. Listening to our patients, communities, and colleagues to find out 1) what unmet needs exist; 2) what resources and assets exist within the individuals and communities; 3) who else is already hard at work addressing the issue you want to improve; and 4) how you can contribute.

In this inaugural issue of CHEST Advocates, we feature a wide-range of advocacy efforts targeting improved COVID-19 outcomes in diverse communities around the country. Read about partnerships between academic medical centers and community organizations, including rural free clinics and urban school districts. Learn about organizations targeting the social drivers of health and unique barriers to healthcare access facing Asian American, Native Hawaiian, and Pacific Islander (AANHPI) communities. Hear the firsthand account of a patient who has used her own experience with long COVID symptoms to teach patients and providers about dealing with this disease.

We hope this and future issues of CHEST Advocates inspire you and provide practical and actionable takeaways that each of us can bring to our own communities to advocate for changes needed to address injustice and improve health equity.