29-05-2025
Advocating for Consistent Health Plan Coverage for Vitiligo
Anxiety, depression, social isolation, and stigma are the daily struggles of people living with vitiligo. Yet coverage of prescribed medication is often denied under the rationale that the condition is 'cosmetic.' The problem persists for Medicaid and TRICARE recipients in particular and varies by state.
Klint Peebles, MD
Vitiligo is an autoimmune disease in which patients' immune systems destroy melanocytes, causing depigmented or white patches of lesions on the skin. While vitiligo is visible, it is hardly a cosmetic condition, because its negative effects are more than skin deep.
Given its high visibility, many patients with vitiligo experience social stigma, low self-esteem, and discrimination. Across all age groups, vitiligo can cause significant insecurity and fear of social rejection, which can lead to social withdrawal and feelings of isolation. The impact of the disease can be even more profound in cultural contexts that idealize uniform, consistent pigmentation. Studies have found that vitiligo has significant negative psychosocial impacts, with patients experiencing higher rates of anxiety, depression and social isolation.
The wide range of negative health effects warrants classification of vitiligo as a medical condition deserving of proper treatment.
Vitiligo is associated with other medical conditions and physiologic effects. Studies have found that around 20% of patients with vitiligo have other autoimmune conditions, such as thyroid disorders, type 1 diabetes, and rheumatoid arthritis, among others. And because patients' immune systems attack melanocytes in the retina, uvea, and cochlea, patients also can experience vision and hearing loss.
Medicaid Challenges
'Part D drugs indicated for the treatment of…vitiligo are not considered cosmetic,' the Centers for Medicare & Medicaid Services' (CMS) Medicare Prescription Drug Benefit Manual clearly states. But although vitiligo is correctly classified as a progressive autoimmune condition by CMS, many patients continue to be denied coverage for their treatment because of discrepancies at the state level.
At least 11 states have Medicaid plans classifying vitiligo as a cosmetic condition, which prevents patients from accessing the medications they need. Seven states (Arizona, Hawaii, Iowa, New Hampshire, New York, Rhode Island, and Virginia) have formal exclusion policies that deny coverage of the first US Food and Drug Administration (FDA)–approved vitiligo treatment, whereas providers in Alabama, North Dakota, South Dakota, and West Virginia have received letters of denial for Medicaid coverage of treatments. In fact, only 20 states have policies explicitly stating that they cover vitiligo treatments.
The discrepancy in classification between CMS and state Medicaid services directly blocks patients from accessing treatment and further compounds disparities in the vitiligo community.
TRICARE Challenges
TRICARE, the government health program for active service members, retirees, and their families, also fails to correctly classify vitiligo as a medical condition. The approach does not align with CMS and other government health agencies' classification.
In contrast, the Blue Cross Blue Shield Federal Employee Program and the Department of Veterans Affairs correctly classify the disease and provide their beneficiaries access to vitiligo treatments. The Department of Veterans Affairs even provides veterans with vitiligo a 10% disability rating, placing further emphasis on the severity of the impact of vitiligo on a patient's overall health and ability to function.
Inconsistencies are all the more troubling because new treatment options could offer patients relief.
The FDA recently approved topical ruxolitinib for treating nonsegmental vitiligo, the first and only drug approved for vitiligo. Repigmentation with treatment not only reduces the risk for skin cancer but also alleviates the psychological burden of having visible discolored skin patches.
Yet, TRICARE's formulary lists this medication as a 'non-formulary drug' based on the incorrect perception that the drug serves only cosmetic use. The only way beneficiaries can access this medication is by submitting forms for prior authorization and proof of medical necessity.
What Dermatologists, Other Healthcare Providers, and Patients Can Do
There are many ways in which physicians and other healthcare providers can advocate for individuals impacted by vitiligo.
First, it is essential to engage with the policymaking process, encouraging legislation and insurance coverage provisions that classify vitiligo appropriately as a medical condition (ie, as a chronic autoimmune disorder) rather than a cosmetic concern. In addition, physicians can work across organized medicine and with regulatory agencies to ensure that evidence-based standards are promoted and amplified.
In all of these contexts, physicians can participate in public hearings, testifying about the psychosocial impact of vitiligo and the need for better treatment options and high-quality research.
Moreover, inclusive research should be encouraged such that diverse patient populations are appropriately represented. It is also essential to advocate for the creation of standardized treatment protocols to help improve patient outcomes. Finally, physicians can participate in broader educational efforts, ensuring that others are aware of the impact of vitiligo and dispel misinformation about the condition. It is also crucial to partner with patients in advocacy groups, nonprofits, and awareness campaigns.
By engaging with the regulatory and policy spaces, physicians can compel systemic changes that lead to higher-quality care, access, improved treatment options, and reduced stigma.
The Derma Care Access Network (DCAN) recently sent letters to CMS and TRICARE urging them to correct these issues. Medical professionals and patients can also take action by contacting their state's Medicaid Director and the DHA's TRICARE Pharmacy Operations Division and urging them to address these problems.
Until health policymakers and regulators standardize the definition of vitiligo as a medical condition, treatment barriers will continue to present a challenge for Medicaid patients and service members living with vitiligo.
Dr Peebles is a board-certified dermatologist at Kaiser Permanente, Washington, DC, and suburban Maryland, a member of the editorial board of the Journal of the American Academy of Dermatology (JAAD), co-chair of JAAD's Diversity, Equity, and Inclusion Work Group, vice chair of the American Medical Association Dermatology Section Council, and chair of the AAD Access to Dermatologic Care Committee and Basic Dermatology Curriculum Work Group. Dr Peebles is also on the board of directors and is the advocacy committee chair of the Medical Society of the District of Columbia, and a member of the Medical Advisory Board for Derma Care Access Network (DCAN).
