Perspectives of Vitiligo Patients: Voices from National Vitiligo Conferences

Abstract

In the United States, many individual vitiligo support groups have collaborated on a joint national US World Vitiligo Day since 2016. As part of the 2020 and 2021 US World Vitiligo Day virtual events, polls were conducted that solicited information from participants regarding their life with vitiligo. A majority (76% in 2020; 92% in 2021) would like a cure for vitiligo. In 2020 and 2021, 40% and 35% responded they both show and hide their vitiligo when asked how they display their skin. A minority, 14% in 2020 and 5% in 2021, reported their vitiligo treatments were fully covered by their insurance. When polled about acceptance, in 2021, 40% reported they were accepting of their vitiligo most days. In 2021, 20% were interested in trying treatments, even if they included moderate side effects and 29% were interested, if minimal side effects. Results herein suggest that while many patients are accepting of their disease, many also want a cure. Additionally, dermatologists should advocate for coverage of vitiligo treatment, while also taking insurance coverage into account when discussing treatment options. Further, vitiligo patients require individualized care considering some patients may be open to attempting more aggressive treatment, despite the side effect profiles, while others are not interested in treatment or only willing to attempt treatments without side effects.