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More Than Words: Neurologic Societies Take Action Toward Anti-Racism

The American Academy of Neurology and other neurology specialty and subspecialty societies, like many other medical societies, are grappling with the problem of systemic racism in health care and in their own organizations. And they have committed to taking sustained and specific actions to become genuinely anti-racist organizations.

"Strong public statements are important, but we have to put action behind them," says AAN President James C. Stevens, MD, FAAN, a specialist in sleep disorders medicine at the Fort Wayne Neurological Center in Indiana.

Beginning in 2014, the AAN created its Diversity Leadership Program, and since then a variety of other task forces and leadership groups have worked on addressing issues of inequity, diversity and inclusion within neurology and in the Academy.

 In the fall of 2018, the Joint Coordinating Council on Equity, Diversity, Inclusion, and Disparities (EDID) was established to ensure that recommendations from these groups, including the Diversity Leadership Program, Gender Disparities Task Force, and the Health Care Disparities Task Force, would be implemented across the entire organization.

"But although a lot of work has been done, events of the past few months, including the heinous murder of George Floyd in Minneapolis, the home of AAN headquarters, have rightly focused people's attention on these injustices, and demonstrated that we must do much more," Dr. Stevens said.

So in early June, the Academy announced the creation of a Special Commission to recommend specific short-term and long-term action steps for the AAN to take toward becoming an anti-racist organization.

"The AAN commits to enact sustained change for our members and patients," said Dr. Stevens in a statement released at the time. "In this historic moment, we are resolved to pursue bold action beyond rhetoric and stand with the communities we serve to eliminate inequities that are antithetical to our values and the pursuit of our vision and mission."

These action steps will be presented to the AAN Board of Directors for review and approval by late summer.

Seeking Sustained Change

"What we need is not a knee-jerk, one-time response, but a sustained change in the way the organization approaches these issues," said Jeffrey McClean II, MD, FAAN, chair of the AAN Equity, Diversity, and Inclusion Joint Coordinating Council. "That's why we created this special commission, to take a deep dive into the organization and the field and look comprehensively at what changes need to be made, both now and in the future, to sustainably move toward that ideal of being a fully inclusive and anti-racist organization."

The AAN Board charged the special commission with two broad areas of focus: (1) The AAN itself—both its structural composition and its programmatic work—and changes necessary to achieve antiracist goals; and (2) disparities in care, particularly within neurology and the neurosciences, and how the Academy can use its influence, resources, and expertise to mitigate and reduce these disparities.

The special commission includes chairs or vice chairs of all the major AAN committees, as well as chairs or editors-in-chief of all other major entities in the Academy, including the publications.

"We have expertise about how the organization works and what it does from top to bottom," said Dr. McClean. "We have combined that expertise and influence with a number of at-large members who have spent a lot of time working on issues related to equity, diversity, inclusion, anti-racism, and social justice."

Since early June, the special commission has conducted several large group meetings and small group breakouts (all virtual), and researched organizations in multiple different fields that have pursued organizational change to become anti-racist—most of them outside medicine. "

We've used those lessons to inform us as we evaluate where the Academy is now, and what concrete steps to take toward becoming an anti-racist organization," Dr. McClean said.

Groundwork for the commission's work was also laid by a powerful presentation from members of the AAN's Emerging Leaders Program, who had been charged in October of 2019 with researching the question of how the Academy could become a fully inclusive society.

"They were both visionary and detailed in their recommendations, and gave us a vision for the Academy moving forward which really formed the foundation for the special commission as we looked into specific things to recommend to the Board of Directors," Dr. McClean said.

The special commission recently finalized its report for review, first by the Equity, Diversity and Inclusion Joint Coordinating Commission and then by the AAN Board of Directors. The report and recommendations will be released publicly in the fall.

Even as the special commission conducted its work, further actions to pursue anti-racist goals were already underway at the AAN. In July, the AAN and Neurology Today hosted a webcast on health care disparities in the time of COVID-19, featuring Richard S. Isaacson, MD, FAAN, founder and director of the Alzheimer's Prevention Clinic at NewYork-Presbyterian/Weill Cornell Medical Center and Richard T. Benson, MD, PhD, director of the Office of Global Health and Health Disparities in the Division of Clinical Research at the National Institute of Neurologic Disorders and Stroke.

The broadcast focused on what AAN members can do to reduce disparities within their institution, how NIH and NINDS are working to address health care disparities across the country, and the importance of developing a diverse pipeline.

And on July 22, the AAN announced the establishment of a new Underrepresented in Neurology Section, formed by leaders from the Society of Black Neurologists (SBN).

"SBN was created about eighteen months ago," explained Jimmy Berthaud, MD, MPH, an assistant professor in the department of neurology at the University of Michigan Medical School. "At the time, there was really no overarching group for underrepresented minorities in the field of neurology to come together, so a small group of us decided to form a society on Facebook."

After SBN had reached more than 100 members—it now has more than 200—Dr. Berthaud and other group leaders approached Dr. McClean about creating an official AAN Section. Less than a month after its founding in July 2020, the new section already had more than 50 members.

In June, the SBN authored a powerful message on Neurology's blog site. "Many of us have had the unfortunate experience of being called "N*gger" and other derogatory words by patients and colleagues. We are often mistaken for other health care workers—commonly janitors, maids, food service workers, and nurses—even while wearing our white coats and identification badges," wrote Dr. Berthaud and colleagues, including Ima Ebong, MD; Aaron Anderson, MD; Shaun Smart, MD; Uzo Ugochukwu, MD; and Andrew Spector, MD.

"If not wearing our white coats, we are often not recognized by our colleagues in the hallways of our hospitals and clinics," the SBN authors wrote. "We endure daily microaggressions regarding our physical appearances, including chosen styles of hair, and choice of attire. Yet we still pride ourselves to provide the best unbiased care possible to patients of all races, regardless of their perceptions of us as Black people."

The SBN and the section's immediate goals are to significantly increase their numbers and help to grow the pipeline of people of color coming into the field. "Only about 2- to 3 percent of practicing neurologists are Black, and we want to increase those numbers," Dr. Berthaud told Neurology Today. "For example, we recently held a Zoom forum for current medical students on how to apply for neurology residency positions, which had about 25 to 30 participants."

The ANA's Own Self-Examination

Like the AAN, the American Neurological Association (ANA), which represents academic neurologists and neuroscientists, is undergoing a similar self-examination on issues of race.

"We first had to accept the fact that for the 143 years of our existence, we have been a relatively exclusionary society," said ANA President Justin McArthur, MBBS, FAAN, FANA, chair and professor of neurology at Johns Hopkins and founding director the of the Johns Hopkins/National Institute of Mental Health Research Center for Novel Therapeutics of HIV-associated Cognitive Disorders.

"Until 15 years ago you could only get into the ANA by being nominated and selected. Those rules were changed with the intent of making the ANA more diverse, younger and more forward-looking, but in terms of social justice and equity, we know that the ANA has to take concrete steps to move us from where we were as an organization toward where we want to be."

The organization has created a new task force on Inclusion, Diversity, Equity, Anti-Racism and Social Justice (IDEAS) to address the diversity of its membership and representational leadership and fund health care disparities research. IDEAS has established an endowed lectureship in the name of Audrey Penn, MD, the first and only Black woman president of the ANA, who will help the organization select its first speaker for 2021.

The ANA has also developed a social justice Zoom series in partnership with Johns Hopkins, with sessions every Thursday from July into early September. "We will have a series of speakers educating our members about systemic racism, implicit bias, and structural elements in our society that have led to health care disparities," said Dr. McArthur. Nearly 200 participants joined the first session, which featured Maya R. Cummings, PhD, former chair of the Maryland Democratic Party and the widow of Congressman Elijah Cummings (D-MD).

In October, the ANA will host a four-hour social justice symposium as part of its virtual Annual Meeting, which will include the presentation of a member survey on diversity and equity and a keynote address from Valencia Walker, MD, assistant dean for equity and diversity inclusion at the David Geffen School of Medicine at UCLA.

"We are committed to making this a durable response, one that is self-sustaining," said Dr. McArthur. "We have to be accountable for our outcomes and will use the social justice symposium at the ANA annual meeting to help us set those metrics. It's not a six-week feel-good campaign. We have been heavily influenced by some of our members of color who have courageously spoken up to candidly tell us that some of them do not feel welcome in our organization. That's a tough thing to say and we owe it to them to take change very seriously."

An Ongoing Effort at the AES

At the subspecialty society level, one organization that is planning significant, specific changes is the American Epilepsy Society (AES).

"We have had an ongoing effort focused on diversity for the last several years, including a special task force on diversity in gender, and we had been working toward efforts on racial equity when the killings of George Floyd, Ahmaud Arbery and Breonna Taylor brought this issue to the forefront," said AES President William D. Gaillard, MD, FAAN, chief of the divisions of child neurology, epilepsy and neurophysiology at Children's National Hospital.

"In response, we have created a Diversity, Equity and Inclusion Task Force, which will report to our board in September on goals and actions to embed in our new strategic plan."

Dr. Gaillard promises that the AES will embed within that strategic plan an ongoing process of addressing all levels of diversity, inclusion and equity, including the creation of a senior-level committee with ongoing responsibilities related to equity, diversity and anti-racism. The AES is also expanding on three existing efforts: These include prioritization of diversity, equity, and inclusion in the AES Fellows Program; an annual poster session at the AES Annual Meeting Better Patient Outcomes through Diversity; and governance, which focuses on addressing diversity in appointments to serve on AES committees.

"We view this as a long-term process, understanding that it requires constant effort," he said. "This is one of those moments where I think it's possible to implement change because there is interest, enthusiasm, and a will to do things better."

All Neurologists Can Take Action 

While awaiting the release of the AAN special commission's recommendations in the fall, all neurologists can take action, starting with recommendations from the SBN's blog post.

"Start with listening and most importantly believing when you hear what life is like for Black Americans," the authors of the blog post wrote. "The stories are not exaggerated. Take time to educate yourself with books like How to Be an Antiracist by Prof. Ibram X. Kendi, Black Man in a White Coat by Dr. Damon Tweedy, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet Washington, or any of a number of similar resources. It is every physician's responsibility to learn what we can about a problem that is killing so many people."

"Given the history of race and racism in our country, our society and in health care, the continuation of the effects of race and racism does not require that people actively perpetuate that system," said Dr. McClean. "It has become self-perpetuating and it won't resolve on its own with time or even increased diversity. It requires purposeful, pro-active and sustained action in order to reverse these things that have plagued our society for hundreds of years."