Why Advocacy Matters to The Future of Vitiligo

Capitol Hill is talking about vitiligo – and it’s our turn to join the conversation.

In the United States, our nation’s democracy gives us the constitutional right to both elect our government and then directly voice our opinions on how money is spent. And we want our nation’s money to go to vitiligo awareness, research and support.

To find out more about vitiligo advocacy and how to lobby with our government, we spoke with Vicki Tiahrt, the wife of former U.S. Representative Todd Tiahrt, who has been living with vitiligo for more than 30 years. Having been around the political circuit, she is now volunteering to use her knowledge about the vitiligo community to help others understand the process and lobby.

LD: You’ve been involved in lobbying Congress because of your husband’s position as a U.S. Representative. What have you learned through his work? 

VT: I actually watched psoriasis go through the lobbying process and get the funding it needed. My husband was in Congress when psoriasis became a family word. We started hearing the word more often and seeing commercials on television. He knew of the condition because of my vitiligo and was sympathetic toward skin diseases. Country singer Lee Ann Rhymes would actually come to my husband’s office multiple times a year because she had psoriasis and wanted more money for awareness and research. We actually got to see more funding for research and treatment.

LD: Why does the vitiligo community need to lobby?

VT: Because we have work to do! We need elected officials at every level – city hall, school board, governors, state legislators, senators and the president – to be aware of what vitiligo is; to understand that we need more money for research; to influence insurance companies to see it as a disease instead of a cosmetic issue so that it will be covered by insurance; to put money towards raising awareness through public service announcements; and to increase information in schools to end bullying.

LD: You were part of the lobbying effort during the World Vitiligo Day rally in Washington, D.C. this past June. What was that like?

VT: There were 20 of us who visited Capitol Hill including two doctors, and we had great meetings. I think they started to grasp what it’s like to live with vitiligo every day. One group even visited with a congressman whose staff person had vitiligo and was willing to speak about his experience too. After our visit, we sent follow-up letters thanking them for their time and reminding them of some of the reasons they need to pay attention to vitiligo. We also sent them the link to the video from the Vitiligo Working Group.

LD: What do you talk about when you meet with elected officials?

VT: One of the vitiligo dermatologists had actually prepared talking points for us. We talked about how vitiligo is currently listed as a cosmetic condition and how it can’t be covered by insurance until it’s listed as a disease. We also talked about why we need better treatment as well as money for research and awareness. You need to ask them, “Can you help us get the administration to put vitiligo on their agenda and direct money to research, awareness and patient support?”

Most importantly though, we shared our personal stories with vitiligo – about how hard it is to live with this condition. There are people with vitiligo who take their lives because of this disease. The despair and feeling of wanting to shut people out or hide – it’s heartbreaking. And our elected officials need to hear these stories so they can understand the urgency of the need to bring money and support to the vitiligo community.

LD: What advocacy is already being done for vitiligo?

VT: The American Academy of Dermatology has a legislative session every September in Washington, D.C. where they share updates, present research and talk about how to lobby. They partner with a lobbying firm who sets up appointments with various senators. I attended last year and accompanied doctors from Minnesota and Pennsylvania. The doctors addressed general dermatology issues like rising prescriptions costs. Then patients were given time to talk about what it’s like to have their condition and what they need. This year we have three vitiligo patients representing the vitiligo community at the session.

On a local level, I know several women who go into public schools where there are children with vitiligo and do presentations in the classrooms. They let the children see their own skin so they’ll stop looking at the child for a few minutes and explain how it feels to be stared at and teased. Their goal is to prevent bullying.

LD: What if you’ve never lobbied and this is outside of your comfort zone?

VT: Start small! Look up the name of your representative and go to one of their local town hall meetings. The first time you go, just do it as a learning experience and listen. Make your goal to show up and shake the representative’s hand. If you can bring a card or brochure to share with the representative, that would be even better. Each time you go, you’ll become more comfortable with the experience.