Two years ago, I gave a speech on the U.S. Capitol grounds about my journey with vitiligo and now in one month, I’ll be sharing that same story with representatives in Washington, D.C. as part of the Global Vitiligo Foundation’s Vitiligo Advocacy Day on Wednesday, Oct. 4.
Speaking on the Hill was a life-changing moment for me – not only because I got to share my personal story, but because I was able to use my voice to stand up for the vitiligo community. As U.S. citizens and patients with vitiligo we have both the right and responsibility to educate our government about the impact of vitiligo and ask for funding, awareness and support.
Whether you can or cannot attend Vitiligo Advocacy Day on Wednesday, Oct. 4, please take the time to write an email to your elected officials. The government’s decision to allocate funds to vitiligo directly impacts your life and your future. Speak up for yourself and the vitiligo community today.
How to Look Up the Name of Your Representative
Each citizen has one elected official in the U.S. House of Representatives and two elected officials in the U.S. Senate. To find your U.S. House of Representatives official: Go to http://www.house.gov/ and enter your zip code in the top right hand corner where it says “Find your representative.” The name of your representative will appear. Click the “email” symbol under the representative’s name and you will be taken to a contact page where you can follow prompts to send an email. To find your U.S. Senate officials: Go to https://www.senate.gov/. In the top left corner, select your state and you will be taken to a page with the names and contact options for each senator. Follow the prompts to send an email.
Sample Email Template
The following is a sample message that can be used to email your elected officials that addresses the need for vitiligo funding and what we are asking our officials to do. Remember to replace “Title” with either “Senator,” “Representative,” and/or the name of your elected official and insert your name at the end before you use the template.
On October 4, 2017, patients with vitiligo will visit Capitol Hill to meet with their elected officials. You may notice these patients in your office or in the halls because they are hard to miss – the white spots that cover their bodies will catch your eye.
Vitiligo is an autoimmune skin disease that causes loss of pigment in 1 in 100 people in the United States. There’s no cure or long-lasting treatments, and yet vitiligo is an emotionally and socially devastating disease that results in depression and alienation.
And that’s why I am writing to you do today. Your constituents with vitiligo need your help.
Here is what you need to know about vitiligo:
- Vitiligo can start at any age. It affects both genders and all races and ethnicities.
- While vitiligo is not physically painful, the white patches that develop are hide to hide, resulting in well-documented and highly negative psychological and social effects. It can be especially devastating to children and those with darker skin.
- Although it is a disease, vitiligo is classified as a cosmetic condition by pharmaceutical companies, blocking patient access to new and better treatments.
- There is very little funding for vitiligo research to better understand the disease and develop new treatments.
- Many available treatments are not covered by insurance. Treatments are also time-consuming and need to be done indefinitely.
Here is what we are asking you to do about it:
- Help vitiligo become recognized as a disease and not merely classified as a “cosmetic” issue by pharmaceutical companies so we can have access to better treatments
- Seek coverage of vitiligo treatment by insurance companies so patients can afford the only available treatments to the disease
- Solicit government funding for research and awareness through the Global Vitiligo Foundation (http://globalvitiligofoundation.org/GVF/), an international organization of dermatologists and scientists from 15 countries working to improve the lives of people with vitiligo and unite awareness and research efforts around the condition
As your constituent, I urge you to support awareness, treatment and a cure for vitiligo.
Alicia Roufs is the chapter leader of VITFriends Minnesota and has been living with vitiligo since she was 3 months old. She lives in Minnesota with her husband Dominic, son Herbie, and their dog Ronnie.