10 April 2025 5 minute read
For Spelman College alumna Itisha Jefferson, C’2011, the fight for equitable healthcare and dignity for patients battling scarring alopecia began long before she was in a position to lead it. It was born from her own experience with alopecia and her relentless drive to ensure no one else had to feel invisible or neglected by the medical system. Jefferson, a medical student at Loyola University Stritch School of Medicine and an unwavering advocate for healthcare equity, has made history by leading the successful national initiative to establish new ICD-10-CM codes for two forms of scarring alopecia— Central Centrifugal Cicatricial Alopecia (CCCA) and Frontal Fibrosing Alopecia (FFA).
These codes — L66.81 for CCCA and L66.12 for FFA — were officially approved by the Centers for Disease Control and Prevention (CDC) and will go into effect in October 2024. This monumental achievement marks the first time in history that scarring alopecia will be represented in the ICD-10-CM classification system, and it happened under the leadership of a Spelman woman.
"These codes will not only allow for better diagnosis and tracking of these conditions but will also help pave the way for improved access to treatment and increased public awareness. For so many of us, it’s not just hair — it’s about identity, dignity, and health equity," said Jefferson who is both a policy expert and a CCCA patient herself.
As the Policy, Advocacy and Diversity chair for the National Dermatology Interest Group Association and a founding member of the Scarring Alopecia Foundation (SAF) Medical Student Executive Board, Jefferson has used every facet of her lived experience, clinical training, and policy knowledge to fuel change. Her work has unified a community of patients, dermatologists, nurses, physician assistants, and advocates to shine a long-overdue light on hair loss conditions that disproportionately impact women of African descent.
From Spelman Sister to Global Scholar
Itisha Jefferson is a passionate advocate for health equity, policy, and clinical research. Raised in Brooklyn by Jamaican immigrant parents, she graduated cum laude from Spelman College with a degree in Chemistry. At Spelman, Jefferson found her voice, developed resilience, and the courage to challenge injustices, committing herself to a life of service and advocacy. It was here that she decided to use her education as a tool for change.
"As part of the inaugural class of the Health Careers Opportunity Pipeline Program — a visionary initiative led by Dr. Rosalind Bass, now Spelman's healthcare advisor — Jefferson gained invaluable mentorship and exposure to the medical field, reinforcing her desire to address healthcare disparities," says Jefferson.
She credits Dr. Leyte Winfield, professor of chemistry and biochemistry at Spelman, director of the Cosmetic Science Program, and chair for the Division of Natural Sciences and Mathematics, for challenging her academically and nurturing her STEM identity. Dr. Winfield’s mentorship continues to be a guiding force in Jefferson’s career. Dr. Winfield recently wrote a letter of recommendation for a scholarship Jefferson applied to, demonstrating their ongoing connection and support. Dr. Barbara Bell, her prior pre-med advisor, who is now retired, played an instrumental role in guiding her through the complexities of the medical school application process, research, and fellowship opportunities, helping Jefferson find her voice in healthcare. These relationships continue to fuel her mission today.
After graduating, Jefferson’s commitment to service took her across the globe. As a Fulbright Scholar in South Korea, she taught English and developed educational curricula. In New York, she worked as a Patient Navigator under the Affordable Care Act, expanding healthcare access for underserved communities. Her research career began at Memorial Sloan Kettering Cancer Center, where she coordinated clinical trials in melanoma immunotherapy and participated in community skin cancer screenings.
Before medical school, she served as a Mabelle Arole Fellow in rural India, working with village health workers to provide education and care to marginalized populations.
Jefferson’s continued leadership has solidified her role as a trailblazer. She has:
CCCA and FFA are debilitating forms of scarring alopecia — conditions that cause permanent hair loss and carry deep emotional and psychological scars. Despite their prevalence among Black women, these disorders have been grossly under-researched and under-recognized. With no FDA-approved treatments, patients are often left navigating a maze of misdiagnosis, stigma, and neglect.
The inclusion of these disorders in the ICD-10-CM database doesn’t just open doors to care—it affirms the lived experiences of countless women who have felt invisible.
"These codes represent validation. They give clinicians tools, they give researchers data, and most importantly, they give patients hope," Jefferson explained.
Advocacy Beyond Alopecia: Keloid Awareness and Policy Change
Jefferson’s advocacy extends far beyond scarring alopecia. In March 2025, she spearheaded the campaign that led to the first-ever proclamation of National Keloid Awareness Month in Illinois, a historic milestone in the fight for awareness and research on keloid scars. Keloids, which disproportionately affect individuals with darker skin tones, often carry significant emotional and psychological distress. Jefferson’s work aims to amplify the voices of those living with this chronic condition.
Keloids are more than just scars, Jefferson explained. "They affect how people see themselves and how they are seen by others. This recognition is a step toward better research, better treatment options, and, most importantly, better awareness."
Her advocacy also extends to improving access to wigs for those experiencing hair loss. She played a key role in the successful passage of Senate Bill 2573, which mandates health insurers in Illinois to provide coverage for wigs and scalp prostheses for individuals suffering from hair loss due to conditions such as alopecia and cancer treatments.
Spelman played an instrumental role in shaping Jefferson into the advocate and leader she is today. It was at Spelman that she first learned the value of resilience, service, and fighting for social justice. She credits her professors, particularly Dr. Leyte Winfield, a champion for Black women in STEM, for challenging her and nurturing her leadership potential.
Jefferson’s impact is not confined to the medical field alone. Her dedication to making healthcare more inclusive and accessible has led to numerous other accomplishments. She is a member of several Centers for Medicare & Medicaid Services (CMS) Technical Expert Panels and participates in advocacy efforts to ensure that clinical trials are more representative of marginalized populations. Through her work with organizations like Doctors for America’s FDA Task Force, Jefferson continues to push for policies that ensure equitable representation in clinical trials and improve patient outcomes.
"As we look toward the future, my work is just one part of a much larger movement for healthcare access," she said. "We are only beginning to scratch the surface when it comes to improving healthcare access and outcomes for underserved populations."
Jefferson's Activities and Societies: J. William Fulbright South Korea English Teaching Assistant Scholar; Critical Language Scholarship Korean Winner; Henry Luce Scholarship Finalist; UNCF Anheuser-Busch Better World Leader Scholarship; UNCF Merck Undergraduate Research Scholarship Fellow; Sigma Xi: Scientific Research Honor Society; National Society of Leadership and Success Honor Society, Alpha Epsilon Delta (AED) ; Howard Hughes Medical Institute (HHMI) Research Fellow; Beta Kappa Chi (BKX) National Scientific Honor Society.