How We’re Advocating For Change in The Vitiligo Community
Over the last decade, people have been passionately advocating for change in the vitiligo community. Change has come slowly, but recent aggressive advocating through vitiligo community groups, social media and mainstream visibility in popular culture has catapulted our cause into the spotlight. Drawing on our strengths and expertise, we are on our way to removing the barriers that stand in our way. How and where have spokespeople gone to advocate for vitiligo? On what level are we trying to affect change? And what can we as a community expect for the future? Here are those answers.
Lobbying the U.S. government for change
The vitiligo community is currently lobbying the U.S. government on two major fronts: the establishment of a National Vitiligo Day; and the changing of the language to describe vitiligo from a “condition” to a “disease,” which would impact insurance coverage for patients. The Advocacy Coordinator for the Global Vitiligo Foundation and Legislative Leader for Vitfriends, Dr. Henry Wallace, has put together a legislative team whose ultimate goals are to pass a vitiligo resolution and push for vitiligo advocacy and awareness in society. The team has also been collaborating with Congressman Hank Johnson’s office, U.S. Representative for Georgia’s 4th congressional district, on revising and gathering support for the upcoming national vitiligo day resolution. The objective being to change the language used to define vitiligo from skin condition to disease. 2019 will be the year to make contacts, build relationships, and gain traction.
Advocating for better representation by the NIH
After attending both a health fair and a patient coalition conference in 2013, the National Institute of Health (NIH) Coalition Leader, Denise Banks, noticed how poorly vitiligo was being represented by the NIH on their government website and paper pamphlets. After futile efforts to contact the department and request changes, Denise joined forces with Vitfriends and a team of doctors to advocate for the cause. The current website features a photo of a group of teenagers without vitiligo and makes no mention of vitiligo resources and support groups. The 2019 goal of the NIH team is to see vitiligo fully represented in documentation and on the website of the United States government’s primary agency for biomedical and public health research.
Raising awareness with World Vitiligo Day
First celebrated in 2011, World Vitiligo Day is now a global event with the purpose of raising awareness and recognition of the bullying, social neglect, psychological trauma and disability of the millions of people affected by vitiligo. Celebrated each year around June 25th, the 2-day conference has been celebrated in Washington, D.C., Detroit, Michigan and Boston Massachusetts in addition to having a global location each year. The 2019 U.S. celebration will take place June 21-23 in Houston, Texas and will focus on the mental and medical journey of vitiligo. The Houston Vitiligo Awareness Movement organization and the GVF are advocating for the neglected role of mental health in Vitiligo treatment. The conference will include patients, advocates, dermatologists pharmaceutical companies and researchers who all come together and share realities of a life with vitiligo, with the goal to raise awareness for vitiligo research, education, and funding.
How are you advocating for change for vitiligo?
Tiffany Posteraro Grant is a New York based entrepreneur and owner of Perfect Penguin Consulting, a digital dating consultation company. In her free time, she enjoys fitness, reading and time spent with her husband and two corgis.
I wrote a play based on the story of a friend with vitiligo. It will be given a staged reading at the end of June, the same week of Vitiligo Awareness Day, at the Washington, DC Black Theater Festival. I invite you all to come to give me feedback and your valuable comments. Invite legislators to come as well. I still don’t know exactly when it will be read, but as soon as I do, I’ll share that information with all of you.
I’ve lived with vitiligo for years (Michael Jackson disease, is how I explain it to anyone who asks). I’ve always been self conscious about my skin. And always try to cover my white patches. I try to think of it as something different I have, that others don’t. So that makes me unique ????
Its always in the back of my mind that a cure will be here soon though, and at least it’s not life threatening.