Self-Advocacy for Vitiligo Patients
- Health Advocacy: Partnering with your Healthcare Provider
- Insurance Advocacy: Tools for Navigating Insurance Hurdles
- Policy Advocacy: Get Involved
- Education & Awareness Advocacy: Sharing Your Story
Health Advocacy:
Partnering with your Healthcare Provider
It’s normal to feel vulnerable and intimidated walking into a physician’s office. Self-advocacy in a healthcare setting can help you overcome this nervousness. It begins with employing strategies for preparing for your medical visit and actively partnering with your physician in shared decision-making throughout your vitiligo journey. Here are a few suggestions:
- Gather your health information and current medication list to help your physician establish a comprehensive health history.
- Bring a list of questions to ask.
- Bring a family member or friend with you for moral support.
- Request translation services and/or accessibility accommodations if needed.
- Ask for clarification when needed, even if you worry about “taking too much of the doctor’s time.”
- Remind yourself that you are the expert of your health and your body and are entitled to play an shared role in decision making with your physician.
- Request documentation of any diagnosis or instructions so you don’t have to rely on memory.
Insurance Advocacy:
Tools for Navigating Insurance Hurdles
Have you been denied coverage for your vitiligo treatments? You do have recourse. Follow the step-by-step guide below to appeal your health plan’s decision and find other options for accessible and affordable treatment:
- Check your insurance policy to see what, specifically, it says about vitiligo treatment coverage.
- Calculate the cost of your prescribed vitiligo treatment. Use this calculation to help convince your insurance provider that you need and deserve coverage for treatments.
- Ask your document to write a letter of medical necessity. Access our templates here and include information about your unique needs and experiences.
- Provide your physician with a preauthorization request form for submission to your insurance company. This form provides documentation of your vitiligo diagnosis, lists treatments that you’ve tried (if applicable), and states the treatment that your physician is recommending.
- Consider participating in research trials. While not technically insurance-related, we mention clinical trials here because they are another potential avenue for anyone seeking treatment for vitiligo. Clinical trials help to further medical science’s understanding of a condition and its therapy. Learn more about clinical trials, how they can make treatment more affordable (or even free), and whether you may be eligible to participate in a vitiligo trial.
Policy Advocacy:
Get Involved
Some vitiligo patients choose to participate in government and insurance carrier advocacy efforts that focus on regulatory reforms, legislative action, and insurance coverage changes.
Education & Awareness Advocacy:
Sharing Your Story
Perhaps the most impactful element of self-advocacy, sharing your story is an excellent way to raise awareness, provide education, and reduce the burden of living with vitiligo.
Victor Huang, MD, a vitiligo treatment specialist and chair of GVF’s Advocacy Committee, has developed a “Talking Points Guide” to support your efforts to share your story. At the heart of this guide is the core message that individuals with vitiligo deserve accurate diagnosis, access to treatment, emotional support, and insurance coverage for medically appropriate care.
We encourage you to utilize this guide as your on social media, in interviews, and with your family and friends. Please note that this guide is intended for education and advocacy. It does not replace medical advice. People with vitiligo should consult a qualified healthcare professional to discuss diagnosis, treatment options, risks, benefits, and personal goals.