Perspectives of Vitiligo Patients: Voices from National Vitiligo Conferences
Main Article Content
Keywords
vitiligo, support group, social media, quality of life
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.
References
2.My Health Teams. My Vitiligo Team [Internet]. Cited 2022 February 1. Available from: https://www.myvitiligoteam.com
3. US Food and Drug Administration. FDA approves topical treatment addressing repigmentation in vitiligo in patients aged 12 and older [Internet]. 2022 July 19 [cited 2022 September 15]. Available from: https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-topical-treatment-addressing-repigmentation-vitiligo-patients-aged-12-and-older
4. Searle T, Al-Niaimi F, Ali FR. Vitiligo: an update on systemic treatments. Clin Exp Dermatol. 2021 Mar;46(2):248-258. doi: 10.1111/ced.14435. Epub 2020 Dec 22. PMID: 33350506.
5. Blundell A, Sachar M, Gabel CK, Bercovitch LG. The scope of health insurance coverage of vitiligo treatments in the United States: Implications for health care outcomes and disparities in children of color. Pediatr Dermatol. 2021 Nov;38 Suppl 2:79-85. doi: 10.1111/pde.14714. Epub 2021 Jul 16. PMID: 34272764.
6. Harris J. Vitiligo gets even more visibility: Chantelle Brown-Young on America’s Next Top Model [Internet]. 2014 August 6 [cited 2022 March 10]. Available from: https://www.umassmed.edu/es/vitiligo/blog/blog-posts1/2014/08/vitiligo-gets-even-more-visibility-chantelle-brown-young-on-americas-next-top-model/
Article Sidebar
Article Details
This work is licensed under a Creative Commons Attribution 4.0 International License.
Creative Commons Attribution (CC BY): lets others distribute and copy the article, to create extracts, abstracts, and other revised versions, adaptations or derivative works of or from an article (such as a translation), to include in a collective work (such as an anthology), to text or data mine the article, even for commercial purposes, as long as they credit the author(s), do not represent the author as endorsing their adaptation of the article, and do not modify the article in such a way as to damage the author's honor or reputation.
Authors retain copyright in their work and license the publisher to publish the content. The publisher is the National Society for Cutaneous Medicine, with production and publishing support provided by OJS, Open Journal Systems,see https://pkp.sfu.
Prior to January 2022, authors transferred copyright to the National Society for Cutaneous Medicine. However, all articles are freely available to anyone in the world. There are no subscription fees, page charges, or article processing charges.