The Importance and Role of Advocacy in the Approval of ICD-10 Codes for CCCA and FFA

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In early October, the Centers for Disease Control and Prevention (CDC) approved ICD-10-CM codes for central centrifugal cicatricial alopecia (CCCA) and frontal fibrosing alopecia (FFA). The codes are L66.81 and L66.12.¹

The recent approval of ICD-10 codes for these forms of scarring alopecia marks a significant milestone, offering both patients and clinicians a clearer framework for diagnosis, treatment, and insurance coverage. The journey to recognizing CCCA and FFA as distinct medical conditions within the health care system is a testament to the power of patient advocacy, collaboration, and persistence.

In an insightful conversation with Itisha Jefferson, a medical student, patient advocate, and one of the co-founders of the Scarring Alopecia Foundation's (SAF) medical student program, Dermatology Times explored the importance of these new codes and the advocacy efforts behind their approval.

A Personal Connection to Scarring Alopecia

Jefferson is not only a medical student at Loyola University Chicago Stritch School of Medicine but is also a patient living with CCCA, having been diagnosed in 2015.

Her personal experience with the condition fuels her advocacy work, particularly in raising awareness about scarring alopecia among medical professionals, patients, and the community at large. This combination of personal experience and medical expertise led to her dedication in pushing for the approval of ICD-10 codes for these conditions—a process long overdue.

Itisha Jefferson

The Significance of the New ICD-10 Codes

The approval of ICD-10 codes for CCCA and FFA is a significant moment for dermatology and for patients who have long felt their conditions were inadequately recognized and understood.

"The approval of these specific ICD-10-CM codes for CCCA, as well as FFA, is groundbreaking, because it validates these conditions as distinct medical diagnoses within the health care system, which have not existed before," Jefferson emphasized.

Before these codes, Jefferson noted that patients often found themselves under vague diagnostic categories, making it difficult for clinicians to track prevalence, manage treatment, and conduct meaningful research. The new codes provide a clearer and more recognized framework, improving diagnostic accuracy, standardizing treatment approaches, and most importantly, enhancing patient access to insurance coverage for care.

Impact on Clinical Practice and Treatment Access

These new codes will revolutionize how clinicians diagnose and manage scarring alopecia, according to Jefferson. They streamline the diagnostic process, offering a clear framework for clinicians to follow when evaluating patients. By enabling accurate documentation, clinicians can track disease progression and make informed decisions about treatment.

Moreover, the approval of these codes will help secure insurance coverage, addressing a major hurdle many patients with CCCA and FFA face when seeking treatment.

"This will make it easier for patients to access appropriate treatments and follow-up care," Jefferson noted, explaining that insurers will now have a standardized method to approve these diagnoses.

The introduction of these codes also contributes to improving treatment outcomes by providing access to therapies previously denied by insurers. This includes innovations like Janus kinase (JAK) inhibitors, which Jefferson notes are gaining traction within the hair loss community. While JAK inhibitors are FDA-approved for alopecia areata, they are not yet approved for scarring alopecia—a distinct condition. However, ongoing research continues to explore their potential efficacy for scarring alopecia. As treatment options evolve, the new codes will foster a more personalized approach to care, ultimately improving patient outcomes.

Overcoming Diagnostic Challenges

Diagnosing CCCA and FFA has historically been challenging due to their subtle onset, which can lead to misdiagnosis or delayed treatment, according to Jefferson. The introduction of these new codes alleviates some of these diagnostic challenges by reducing ambiguity.

"The subtle onset of symptoms can be confused with other forms of alopecia or scalp conditions," Jefferson said.

With earlier recognition of scarring alopecia, clinicians can intervene more promptly, preventing irreversible hair loss. "With these new codes, clinicians can document the precise type of scarring alopecia at earlier stages, which can lead to earlier intervention and better long-term management," Jefferson elaborated.

The Advocacy Journey Behind the Codes

The road to securing ICD-10 codes for CCCA and FFA was not easy. Jefferson’s advocacy work began when she realized there was no ICD-10 code for CCCA during an unrelated research study on patients with hidradenitis suppurativa having a higher rate of post-operative infections. Part of her study methods included using ICD-9 and 10 codes and Current Procedural Terminology Surgical Procedure Codes to define the study variables. This experience prompted her to explore the process for proposing new medical codes.

"I did not see a code for CCCA, so I started researching how to obtain an ICD-10 code for diseases in general," Jefferson recounted. Her efforts, along with the support of fellow SAF Medical Student Program co-founders, now dermatology residents, Morinola Shobajo, MD, Jessica Brown-Korsah, MD, and James Pathoulas, MD, and SAF’s Executive Director, Jean Pickford, led to the submission of a proposal to the CDC’s ICD-10 Coordination and Maintenance Committee in December 2022.

The team behind the new ICD-10-CM codes

The team’s persistence paid off when, by February 2023, they made it to the second round of the proposal process, which involved presenting their case to the CDC. Jefferson described this stage as a collaborative effort, as their team also included world renowned dermatologists and hair experts, Maria Hordinsky, MD, professor of dermatology at the University of Minnesota, Minneapolis, and a member of the Board of Directors, SAF; and Amy McMichael, MD, professor of dermatology at Wake Forest University School of Medicine, Winston-Salem, North Carolina, and a scientific advisor to SAF; who presented on FFA and CCCA, respectively. The support from the American Academy of Dermatology played a crucial role in the proposal’s success.

"Without the partnership of dermatologists and the Scarring Alopecia Foundation, I do not think this would have been successful," Jefferson noted.

A Victory for Patients

After months of advocacy with receiving letters of support from numerous patients, 19 professional dermatologic societies and patient related organizations and 23 dermatologists, Jefferson and her team received the approval for the new codes in June 2023. However, implementation did not occur until October 2024, allowing time for integration into clinical practice.

Jefferson expressed pride in the achievement, saying, “I just want to say thank you to everyone who supported us, which is very important to me as a scarring alopecia patient. I can speak on behalf of all patients that when you go on this journey, you do not know the change that you can make. I am glad we, collectively, the whole entire team, Scarring Alopecia Foundation, my peers, the dermatologists, the dermatologic societies and patient related organizations, and more importantly the patients, we definitely made a change as these codes are the first of its kind. It is a 'hairtoric' moment.”

For Jefferson, the approval of these codes is deeply personal. She recalled the emotional toll of her initial CCCA diagnosis.

"When I heard that news...I literally cried, and it was so overwhelming for me," she shared. As someone who views hair as a crucial part of her identity, the loss associated with scarring alopecia was especially devastating. “I was shocked, because hair, especially depending on your culture and your beliefs, can mean a lot of things in different cultures. I am from a Jamaican background. To me, my hair is my crown. It can change how you look and also impact your self-esteem and your quality of life.”

The lack of recognition and delayed treatment due to vague diagnostic codes further compounded her challenges. "For years, CCCA was treated as a generic hair loss condition," Jefferson says, “and we did not capture the scarring and irreversible damage that this disease can cause.”

Empowering Patients and Looking to the Future

The introduction of these new ICD-10 codes is a crucial step forward for patients with CCCA and FFA, ensuring their conditions are recognized, treated, and researched with the seriousness they deserve.

“As an African American/Black woman, my hair is very different,” Jefferson said. “Not everyone will know what my hair is like, or how my hair is different, or what the treatment options can be for people who look like me. I am so happy that everyone is eager to learn more about patients who have different hair textures that are more tightly coiled. Now that there is a specific ICD-10-CM code, I believe that other patients will have a much smoother path to earlier diagnosis, treatment, or intervention.”

Reference

1. New ICD-10-CM codes for FFA & CCCA. News release. Scarring Alopecia Foundation. Published August 24, 2024. Accessed November 18, 2024. https://blog.scarringalopecia.org/medical-articles/new-icd-10-cm-codes-for-ffa-ccca#:~:text=The%20Centers%20for%20Disease%20Control,81%20and%20L66