I’m a Black, Genderqueer Medical Student: Here’s My Hard-Won Wisdom for Students and Educational Institutions
Advice follows for how to improve higher education for marginalized communities.
This article is part of the magazine, "The Future of Science In America: The Election Issue," co-published by LeapsMag, the Aspen Institute Science & Society Program, and GOOD.
In the last 12 years, I have earned degrees from Harvard College and Duke University and trained in an M.D.-Ph.D. program at the University of Pennsylvania. Through this process, I have assembled much educational privilege and can now speak with the authority that is conferred in these ivory towers. Along the way, as a Black, genderqueer, first-generation, low-income trainee, the systems of oppression that permeate American society—racism, transphobia, and classism, among others—coalesced in the microcosm of academia into a unique set of challenges that I had to navigate. I would like to share some of the lessons I have learned over the years in the format of advice for both Black, Indigenous, and other People of Color (BIPOC) and LGBTQ+ trainees as well as members of the education institutions that seek to serve them.
To BIPOC and LGBTQ+ Trainees: Who you are is an asset, not an obstacle. Throughout my undergraduate years, I viewed my background as something to overcome. I had to overcome the instances of implicit bias and overt discrimination I experienced in my classes and among my peers. I had to overcome the preconceived, racialized, limitations on my abilities that academic advisors projected onto me as they characterized my course load as too ambitious or declared me unfit for medical school. I had to overcome the lack of social capital that comes with being from a low-resourced rural community and learn all the idiosyncrasies of academia from how to write professional emails to how and when to solicit feedback. I viewed my Blackness, queerness, and transness as inconveniences of identity that made my life harder.
It was only as I went on to graduate and medical school that I saw how much strength comes from who I am. My perspective allows me to conduct insightful, high-impact, and creative research that speaks to uplifting my various intersecting communities. My work on health equity for transgender people of color (TPOC) and BIPOC trainees in medicine is my form of advocacy. My publications are love letters to my communities, telling them that I see them and that I am with them. They are also indictments of the systems that oppress them and evidence that supports policy innovations and help move our society toward a more equitable future.
To Educators and Institutions: Allyship is active and uncomfortable. In the last 20 years, institutions have professed interest in diversifying their members and supporting marginalized groups. However, despite these proclamations, most have fallen short of truly allying themselves to communities in need of support. People often assume that allyship is defined by intent; that they are allies to Black people in the #BLM era because they, too, believe that Black lives have value. This is decency, not allyship. In the wake of the tragic killings of Breonna Taylor and George Floyd, and the ongoing racial inequity of the COVID-19 pandemic, every person of color that I know in academia has been invited to a townhall on racism. These meetings risk re-traumatizing Black people if they feel coerced into sharing their experiences with racism in front of their white colleagues. This is exploitation, not allyship. These discussions must be carefully designed to prioritize Black voices but not depend on them. They must rely on shared responsibility for strategizing systemic change that centers the needs of Black and marginalized voices while diffusing the requisite labor across the entire institution.
Allyship requires a commitment to actions, not ideas. In education this is fostering safe environments for BIPOC and LGBTQ+ students. It is changing the culture of your institution such that anti-racism is a shared value and that work to establish anti-racist practices is distributed across all groups rather than just an additional tax on minority students and faculty. It is providing dedicated spaces for BIPOC and LGBTQ+ students where they can build community amongst themselves away from the gaze of majority white, heterosexual, and cisgender groups that dominate other spaces. It is also building the infrastructure to educate all members of your institution on issues facing BIPOC and LGBTQ+ students rather than relying on members of those communities to educate others through divulging their personal experiences.
Among well-intentioned ally hopefuls, anxiety can be a major barrier to action. Anxiety around the possibility of making a mistake, saying the wrong thing, hurting or offending someone, and having uncomfortable conversations. I'm here to alleviate any uncertainty around that: You will likely make mistakes, you may receive backlash, you will undoubtedly have uncomfortable conversations, and you may have to apologize. Steel yourself to that possibility and view it as an asset. People give their most unfiltered feedback when they have been hurt, so take that as an opportunity to guide change within your organizations and your own practices. How you respond to criticism will determine your allyship status. People are more likely to forgive when a commitment to change is quickly and repeatedly demonstrated.
The first step to moving forward in an anti-racist framework is to compensate the students for their labor in making the institution more inclusive.
To BIPOC and LGBTQ+ Trainees: Your labor is worth compensation and recognition. It is difficult to see your institution failing to adequately support members of your community without feeling compelled to act. As a Black person in medicine I have served on nearly every committee related to diversity recruitment and admissions. As a queer person I have sat on many taskforces dedicated to improving trans education in medical curricula. I have spent countless hours improving the institutions at which I have been educated and will likely spend countless more. However, over the past few years, I have realized that those hours do not generally advance my academic and professional goals. My peers who do not share in my marginalized identities do not have the external pressure to sequester large parts of their time for institutional change. While I was drafting emails to administrators or preparing journal clubs to educate students on trans health, my peers were studying.
There were periods in my education where there were appreciable declines in my grades and research productivity because of the time I spent on institutional reform. Without care, this phenomenon can translate to a perceived achievement gap. It is not that BIPOC and LGBTQ+ achieve less; in fact, in many ways we achieve more. However, we expend much of our effort on activities that are not traditionally valued as accomplishments for career advancement. The only way to change this norm is to start demanding compensation for your labor and respectfully declining if it is not provided. Compensation can be monetary, but it can also be opportunities for professional identity formation. For uncompensated work that I feel particularly compelled to do, I strategize how it can benefit me before starting the project. Can I write it up for publication in a peer-reviewed scientific journal? Can I find an advisor to support the task force and write a letter of reference on my behalf? Can I use the project to apply for external research funding or scholarships? These are all ways of translating the work that matters to you into the currency that the medical establishment values as productivity.
To Educators and Institutions: Compensate marginalized members of your organizations for making it better. Racism is the oldest institution in America. It is built into the foundation of the country and rests in the very top office in our nation's capital. Analogues of racism, specifically gender-based discrimination, transphobia, and classism, have similarly seeped into the fabric of our country and education system. Given their ubiquity, how can we expect to combat these issues cheaply? Today, anti-racism work is in vogue in academia, and institutions have looked to their Black and otherwise marginalized students to provide ways that the institution can improve. We, as students, regularly respond with well-researched, scholarly, actionable lists of specific interventions that are the result of dozens (sometimes hundreds) of hours of unpaid labor. Then, administrators dissect these interventions and scale them back citing budgetary concerns or hiring limitations.
It gives the impression that they view racism as an easy issue to fix, that can be slotted in under an existing line item, rather than the severe problem requiring radical reform that it actually is. The first step to moving forward in an anti-racist framework is to compensate the students for their labor in making the institution more inclusive. Inclusion and equity improve the educational environment for all students, so in the same way one would pay a consultant for an audit that identifies weaknesses in your institution, you should pay your students who are investing countless hours in strategic planning. While financial compensation is usually preferable, institutions can endow specific equity-related student awards, fellowships, and research programs that allow the work that students are already doing to help further their careers. Next, it is important to invest. Add anti-racism and equity interventions as specific items in departmental and institutional budgets so that there is annual reserved capital dedicated to these improvements, part of which can include the aforementioned student compensation.
To BIPOC and LGBTQ+ Trainees: Seek and be mentors. Early in my training, I often lamented the lack of mentors who shared important identities with myself. I initially sought a Black, queer mentor in medicine who could open doors and guide me from undergrad pre-med to university professor. Unfortunately, given the composition of the U.S. academy, this was not a realistic goal. While our white, cisgender, heterosexual colleagues can identify mentors they reflect, we have to operate on a different mentorship model. In my experience, it is more effective to assemble a mentorship network: a group of allies who facilitate your professional and personal development across one or more arenas. For me, as a physician-scholar-advocate, I need professional mentors who support my specific research interests, help me develop as a policy innovator and advocate, and who can guide my overall career trajectory on the short- and long- term time scales.
Rather than expecting one mentor to fulfill all those roles, as well as be Black and queer, I instead seek a set of mentors that can share in these roles, all of whom are informed or educable on the unique needs of Black and queer trainees. When assembling your own mentorship network, remember personal mentors who can help you develop self-care strategies and achieve work-life balance. Also, there is much value in peer mentorship. Some of my best mentors are my contemporaries. Your experiences have allowed you to accumulate knowledge—share that knowledge with each other.
To Educators and Institutions: Hire better mentors. Be better mentors. Poor mentorship is a challenge throughout academia that is amplified for BIPOC and LGBTQ+ trainees. Part of this challenge is due to priorities established in the hiring process. Institutions need to update hiring practices to explicitly evaluate faculty and staff candidates for their ability to be good mentors, particularly to students from marginalized communities. This can be achieved by including diverse groups of students on hiring committees and allowing them to interview candidates and assess how the candidate will support student needs. Also, continually evaluate current faculty and staff based on standardized feedback from students that will allow you to identify and intervene on deficits and continually improve the quality of mentorship at your institution.
The suggestions I provided are about navigating medical education, as it exists now. I hope that incorporating these practices will allow institutions to better serve the BIPOC and LGBTQ+ trainees that help make their communities vibrant. I also hope that my fellow BIPOC and LGBTQ+ trainees can see themselves in this conversation and feel affirmed and equipped in navigating medicine based on the tools I provide here. However, my words are only a tempering measure. True justice in medical education and health will only happen when we overhaul our institutions and dismantle systems of oppression in our society.
[Editor's Note: To read other articles in this special magazine issue, visit the beautifully designed e-reader version.]
Patients, family voice hope and relief as FDA gives only its third-ever drug approval for ALS
On Sept. 29, the FDA approved Relyvrio, a new drug for ALS, even though a study of 137 ALS patients did not result in “substantial evidence” that Relyvrio was effective.
At age 52, Glen Rouse suffered from arm weakness and a lot of muscle twitches. “I first thought something was wrong when I could not throw a 50-pound bag of dog food over the tailgate of my truck—something I use to do effortlessly,” said the 54-year-old resident of Anderson, California, about three hours north of San Francisco.
In August, Rouse retired as a forester for a private timber company, a job he had held for 31 years. The impetus: amyotrophic lateral sclerosis, or ALS, a progressive neuromuscular disease that is commonly known as Lou Gehrig’s disease, named after the New York Yankees’ first baseman who succumbed to it less than a month shy of his 40th birthday in 1941. ALS eventually robs an individual of the ability to talk, walk, chew, swallow and breathe.
Rouse is now dependent on ventilation through a nasal mask and uses a powerchair to get around. “I can no longer walk or use my arms very well,” he said. “I can still move my wrists and fingers. I can also transfer from my chair to the toilet if I have two of my friends help me.”
It’s “shocking” that modern medicine has very little to offer to people with this devastating condition, Rouse said. But there is hope on the horizon. Yesterday, the U.S. Food and Drug Administration approved Relyvrio, a drug made up of two parts, sodium phenylbutyrate and taurursodiol, to treat patients with ALS.
“This approval provides another important treatment option for ALS, a life-threatening disease that currently has no cure,” said Billy Dunn, director of the Office of Neuroscience in the FDA’s Center for Drug Evaluation and Research, in a statement. “The FDA remains committed to facilitating the development of additional ALS treatments.”
Until this point, the FDA had approved only two other medications—Riluzole (rilutek) in 1995 and Radicava (edaravone) in 2017—to extend life in patients with ALS, which typically kills within two to five years after diagnosis. That’s why earlier this week, Rouse was optimistic about the FDA’s likely approval of a controversial new drug for ALS.
When Relyvrio is taken in addition to Riluzole, it appears to slow functional decline by an additional 25 percent and extend life by another 6 to 10 months, said Richard Bedlak, director of the Duke ALS Clinic. “It is not a cure, but it is definitely a step forward.”
“The whole ALS community is extremely excited about it,” he said the day before Relyvrio’s expected approval. “We are very hopeful. We’re on pins and needles.”
A study of 137 ALS patients did not result in “substantial evidence” that Relyvrio was effective, the agency’s Peripheral and Central Nervous System Drugs Advisory Committee concluded in March. However, after some persuasion from FDA officials, patients and their families, the committee met again and decided to recommend approving the drug.
In January 2019, following an ALS diagnosis in October the previous year, Jeff Sarnacki, of Chester, Maryland, was accepted into a trial for Relyvrio. “Because of the trial, we did experience hope and a greater sense of help than had we not had that opportunity,” said Juliet Taylor, his wife and caregiver. They both believed the drug “worked for him in giving him more time.”
In June 2019, Sarnacki chose an open-label extension, offered to patients by drug researchers after a study ends, and took the active drug until he died peacefully at home under hospice care in May 2020, five days after his 60th birthday. A retired agent with the federal Bureau of Alcohol, Tobacco, Firearms and Explosives who later worked as a security consultant, Sarnacki lived about 19 months after diagnosis, which is shorter than the typical prognosis.
His symptoms had begun with leg cramps and foot drop in late fall 2017. At the end of life, he could only move a few fingers on his left hand and could not speak or eat by mouth; a feeding tube became necessary, Taylor said. He also took Radicava and Riluzole, the two previously approved drugs, for his ALS. “We were both incredulous that, so many years after Lou Gehrig’s own diagnosis, there were so few treatments available,” she said.
The dearth of successful treatments for ALS is “certainly not for lack of trying,” said Karen Raley Steffens, a registered nurse and ALS support services coordinator at the Les Turner ALS Foundation in Skokie, Ill. “There are thousands of researchers and scientists all over the world working tirelessly to try to develop treatments for ALS.”
Unfortunately, she adds, research takes time and exorbitant amounts of funding, while bureaucratic challenges persist. The rare disease also manifests and progresses in many different ways, so many treatments are needed.
As of 2017, the Centers for Disease Control and Prevention estimated that more than 31,000 people in the U.S. live with ALS, and an average of 5,000 people are newly diagnosed every year.
Most cases of ALS are sporadic, meaning that doctors don’t know the cause. There is about a one-year interval between symptom onset and an ALS diagnosis for most patients, so many motor neurons are lost by the time individuals can enroll in a clinical trial, said Richard Bedlack, professor of neurology and director of the Duke ALS Clinic in Durham, North Carolina.
Bedlack found the new drug, Relyvrio, to be “very promising,” which is why he testified to the FDA in favor of approval. (He’s a consultant and disease state speaker for multiple companies including Amylyx, manufacturer of Relyvrio.)
The “drug has different mechanisms of action than the currently approved treatments,” said Bedlack, who is also chief of neurology at the Durham Veterans Affairs Medical Center. He adds that, when Relyvrio is taken in addition to Riluzole, it appears to slow functional decline by an additional 25 percent and extend life by another 6 to 10 months. “It is not a cure, but it is definitely a step forward.”
T. Scott Diesing, a neurohospitalist and director of general neurology at the University of Nebraska Medical Center in Omaha, said he hopes the drug is “as good as people anticipated it should be, because there are not too many options for these patients.”
So far, Rouse's voice is holding up, but he knows the day will come when ALS will steal that and much more from him.
ALS is 100 percent fatal, with some patients dying as soon as a year after diagnosis. A few have lasted as long as 15 years, but those are the exceptions, Diesing said.
“If this drug can provide even months of additional life, or would maintain quality of life, that’s a big deal,” he notes, adding that “the patients are saying, ‘I know it’s not proven conclusively, but what do we have to lose?’ So, they would like to try it while additional studies are ongoing.” The drug has already been approved in Canada.
As his disease progresses, Rouse hopes to get a speech-to-text voice-generating computer that he can control with his eyes. So far, his voice is holding up, but he knows the day will come when ALS will steal that and much more from him. He works at I AM ALS, a patient-led community, and six of his friends have already died of the disease.
“Every time I lose a friend to ALS, I grieve and am sad but I resolve myself to keep working harder for them, myself and others,” Rouse said. “People living with ALS find great purpose in life advocating and trying to make a difference.”
Friday Five Podcast: New drug may slow the rate of Alzheimer's disease
On September 27, pharmaceuticals Biogen and Eisai announced that their drug, lecanemab, can slow the rate of Alzheimer's disease, according to a clinical trial. Today's Friday Five episode covers this story and other health research over the month of September.
The Friday Five covers important stories in health and science research that you may have missed - usually over the previous week, but today's episode is a lookback on important studies over the month of September.
Most recently, on September 27, pharmaceuticals Biogen and Eisai announced that a clinical trial showed their drug, lecanemab, can slow the rate of Alzheimer's disease. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend and the new month.
Listen on Apple | Listen on Spotify | Listen on Stitcher | Listen on Amazon | Listen on Google
This Friday Five episode covers the following studies published and announced over the past month:
- A new drug is shown to slow the rate of Alzheimer's disease
- The need for speed if you want to reduce your risk of dementia
- How to refreeze the north and south poles
- Ancient wisdom about Neti pots could pay off for Covid
- Two women, one man and a baby
Matt Fuchs is the editor-in-chief of Leaps.org. He is also a contributing reporter to the Washington Post and has written for the New York Times, Time Magazine, WIRED and the Washington Post Magazine, among other outlets. Follow him on Twitter @fuchswriter.