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Janssen, Johns Hopkins Dermatology’s Ethnic Skin Fellowship Program partnership focuses on improving clinical care and advancing research for skin-of-color patients.
By 2044, it is projected that more than half of all Americans will identify themselves as people of color and be considered as having skin of color (SOC). Within dermatology, SOC is defined as increased constitutive skin pigmentation or skin prototype, the genetically determined color of skin in the absence of any external factors, especially sunlight in which the ultraviolet light causes tanning and darkening of the skin. This population of Americans is historically underrepresented across medicine, in both treatments and doctors, despite many dermatology disorders disproportionally affecting SOC populations.
According to the Journal of the American Academy of Dermatology, only 3% of dermatologists in the country are Black even though Black people account for nearly 14% of the U.S. population. Not only are there disparities in the number of doctors, but there is a lack of diversity in medical education resources (such as photographs of skin diseases in SOC patients), which creates challenges in the diagnosis and treatment of skin conditions such as hypersensitivity reactions, rashes and cancer.1 There are several conditions that disproportionately impact minority SOC populations and, by and large, these conditions have been historically understudied.
A study of medical students found a reduced ability to diagnose common dermatologic pathologies with photographs of dark skin. The failure to identify and diagnose diseases accurately can have grave consequences for patients. In particular, while skin cancer is not as common in SOC populations, delayed diagnoses contribute to increases in morbidity and mortality. Patients’ relationships with their dermatologists can also be limited, with one study showing that Black patients seen at a non-SOC clinic felt less respected and experienced less understanding and trust with their physicians.
Tackling Dermatologic Disparities
While studies have consistently shown that patients prefer a doctor of the same racial or ethnic background, it is not required for them to have a positive experience. Instead, a patient’s satisfaction was tied to the doctor’s knowledge about their skin and hair in a culturally sensitive interaction. Furthermore, to overcome this problem is not only more dermatologists with SOC but better training among all dermatologists, especially from educators, trainers and leaders, which can contribute to patient trust and improved care.
Additionally, close collaboration between the pharma industry and dermatologists with SOC can help focus clinical research in the development of new treatment options for difficult-to-treat inflammatory skin conditions that uniquely affect SOC populations like hidradenitis suppurativa (HS), vitiligo and atopic dermatitis.
For the past two years, Janssen the Pharmaceutical Companies of Johnson & Johnson, has been partnering with Johns Hopkins Dermatology’s Ethnic Skin Fellowship Program (ESP), one of the most successful programs in the U.S. to address the unmet medical needs of SOC patients. Specifically, the Johns Hopkins ESP is focused on increasing and improving clinical care and advancing research in SOC populations, and most importantly training future dermatologists and researchers who will dedicate themselves to the treatment and study of diseases that either disproportionately impact SOC minority populations, or that have not been properly investigated in SOC patients. The program serves as a research hub that not only helps improve the existing therapies that are provided for patients but could potentially help identify novel treatments for otherwise difficult-to-treat conditions.
Thus far, past fellows and faculty of the ESP have received eight of the 15 research awards in the history of the Skin of Color Society (SOCS), the largest organization dedicated to research in this population. Additionally, members of the ESP have represented a majority of research abstracts presented at the SOC section at the Society for Investigative Dermatology (SID) since its inception in 2017. Initially founded about 15 years ago by Dr. Ginette Okoye (current Chair, Department of Dermatology, Howard University College of Medicine) and Dr. Sewon Kang (current Chair, Department of Dermatology, Johns Hopkins University School of Medicine), the ESP’s goal is to serve as a national leader in the delivery of clinical care for patients with pigmented skin tones and a center of excellence for research studies in SOC dermatology patients.
Janssen and the ESP are continuing their partnership in 2023 and are committed to investing in and helping address the lack of dermatologic care for underserved populations. Together, both parties are looking toward an equitable future where all individuals are represented in treatment. The partnership falls within Johnson & Johnson’s Our Race to Health Equity initiative that was launched in November 2020 with a pledge of $100 million to help resolve the systemic health inequities that contribute to a lower standard of care for people in historically marginalized communities.
Through these industry and academia partnerships in training and research, there have been several treatment breakthroughs for dermatologic diseases that disproportionately affect people with SOC. Having an effective therapy available to treat this condition is particularly transformative for patients.
For example, there is great progress in the development of treatments for HS, an inflammatory condition that is associated with very painful and uncomfortable boils, particularly in the groin area under arms and buttocks. This condition can have a significant negative impact on quality of life and in severe cases, the pain from the deep skin inflammation impacts the patient’s ability to seamlessly move their arms and legs and they cannot walk without pain. Even sitting can be very uncomfortable and the pain also affects the ability for these patients to sleep.
The Future of SOC Treatment
While there have been successes in launching new treatments, minority SOC patients need both new medicines and their doctors to appreciate the differences in how they can be affected in different ways than those who do not have SOC.
The ESP is also working to understand cytokine expression pattern and potential treatments for patients with a form of scarring hair loss called central centrifugal cicatricial alopecia (CCCA), to help identify potential therapies to help treat this difficult disease. This is part of a proteomics study seeking to understand ethnic variation in the presentation of pattern hair loss, an area that has been historically understudied.
Other interesting projects from ESP include a study to understand how cytokine expression changes with shampooing and how wearing of hijabs may affect hair loss. These types of studies require nuance and the understanding of cultural practices, something not considered in typical dermatologic studies.
Dermatologists are becoming more aware that patients with SOC have been historically undertreated, and it is critical that their training includes information on how to identify skin and hair diseases for people with SOC. Together, industry and academia are working to develop new treatments to address conditions that affect some of the historically underserved and undertreated populations.