Why Advocate?Why Advocate? https://pediatricsnationwide.org/wp-content/uploads/2021/01/Ray-Bignall-1024x575.jpg 1024 575 Ray Bignall Ray Bignall https://pediatricsnationwide.org/wp-content/uploads/2021/03/072718ds2865.jpg_bignall-profile.jpg
- October 10, 2019
- Ray Bignall
Several months ago, I had the privilege of attending a panel discussion on health in the African American community hosted by my local church. It was an opportunity for our largely African American congregation to hear from Black health professionals promoting health-seeking behavior in communities of color. Sitting in the audience, I listened as each panelist shared the challenges and triumphs of providing care to minority patients, where health inequities and adverse social circumstances often create barriers to care.
As the floor was opened for questions and comments, the queue for the microphones grew long as person after person patiently waited to share stories of mistreatment and disregard at the hands of medical professionals. Stories of delayed diagnoses and disrespectful interactions filled the sanctuary and received rousing affirmations by everyone in attendance. Many of the health professionals on the panel chimed in with similar stories of their own, each story reinforcing the feelings of hurt and distrust echoed by the others.
It was painful to hear how little faith my community had in health care professionals like me to be a part of their healing. It was painful, but not surprising.
For communities of color and underserved populations in the United States, these stories paint a picture of mistrust in the healthcare system that complicates our ability to care for our patients. This mistrust runs deeper than the stories of the Tuskegee Syphilis Study or the exploitation of the body of Henrietta Lacks. It lives on in the stories of immigrant children at the southern border separated from their parents by our federal government. It lives on in the stories of Black women – like epidemiologist Dr. Shalon Irving and tennis icon Serena Williams – who experienced postpartum morbidity and mortality in part due to their doctor’s failure to recognize their complaints.
As an African American pediatric nephrologist – a member of an increasingly shrinking pool of Black men in medicine – I am accustomed to these stories; I even have a few of my own. Like many underrepresented minorities in medicine, an ambition to correct this injustice drove me to become a doctor in the first place. The heart of my work as a pediatrician is my role as an advocate for communities in need.
Perhaps no field of pediatrics sits more squarely at the intersection of health and social justice than nephrology, and the capacity for me to impact the care of underserved populations is profound.
The kidney’s primary role in the body is the maintenance of homeostasis, and when acute illness or chronic disease challenges this balance, kidney injury often follows. My patients are frequently those on the frontlines of social disadvantage, where poverty, housing instability, food insecurity and structural racism have all been shown to impact kidney health outcomes. Therefore, the same adversities that challenge their social balance challenge their physiologic balance as well.
Nephrology is a natural fit for the physician-advocate, and our field has been engaged in advocacy at every level since the inception of the specialty. The federal government’s decision in 1972 to cover end-stage kidney disease as a Medicare benefit for which every American is eligible – including children – was made possible in large part to nephrologists’ advocacy efforts.
Today, pediatric nephrologists play an important role in national advocacy efforts on behalf of children and families. In support of this contribution, the American Society of Pediatric Nephrology is one of a handful of pediatric sub-specialty organizations to sponsor an advocacy fellowship designed to teach pediatric nephrologists how to advocate for patients. Nationwide Children’s Hospital has had several pediatric nephrologists participate in this program: Drs. Brian Becknell, John David Spencer, and I are all proud alumni of the John E. Lewy Fund Advocacy Scholars (JELF Scholar) program. As JELF Scholars, we learn to advocate for our most vulnerable patients in a variety of arenas. We engage in research advocacy by lobbying the National Institutes of Health to increase funding for child health research priorities. JELF Scholars join the ASPN in meetings with regulatory agencies such as the Food and Drug Administration and the Centers for Medicare and Medicaid Services to ensure that children are considered in major policy decisions. As legislative advocates, we’ve traveled to the Ohio Statehouse, the United States Congress and the White House to push for legislation and policies and legislation that would advance population health and fight inequalities that adversely affect children and families.
I am immensely proud to be a part of one of the most socially engaged divisions of pediatric nephrology in America. Our faculty, staff and fellows partner with organizations such as the National Kidney Foundation and American Heart Association to raise awareness about kidney disease. We travel around the world to build pediatric nephrology programs in developing countries. We meet with government officials to advocate for our patients, families and colleagues. We direct multi-national research collaboratives such as the Pediatric Nephrology Research Consortium, which has radically improved our understanding of childhood kidney disease.
I often say that, because there are no chameleons practicing pediatric medicine, I’m pretty sure that none of us are able to change our skin tone to reflect the rich diversity of the patients for whom we are privileged to care. Thankfully, being an effective advocate doesn’t require that. It simply takes a community of pediatricians dedicated to developing durable relationships through patient care, community engagement and outreach. And that’s something all of us can do!
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