Update: The agenda and recording from the FDA’s public meeting about vitiligo on March 8th are now available online. The FDA created a public docket to continue collecting feedback from those living with vitiligo and their family members through May 10, 2021. You’re invited to share written comments publicly or anonymously about your symptoms, daily impact and thoughts on treatments. Visit the public docket to share your feedback with FDA and let them know what’s important to you.
On March 8, 2021, the United States Food and Drug Administration (FDA) will host a public virtual meeting for those with vitiligo, their family members and industry professionals. The event will take place in the form of a live webcast from 10 am to 2:30 pm EST and is open for anyone to attend.
As the FDA is the part of the U.S. government responsible for – among many other things – regulating medications made available to the public, this event is an exciting and critical moment for vitiligo and the future of its treatment.
Here’s what you need to know – and how to attend.
The FDA needs your input
In their own words, the FDA is “interested in hearing patients’ perspectives on the impact of vitiligo on daily life and patient views on treatment approaches.” If you are living with vitiligo or are a family member of someone with vitiligo, this means they want to hear from you.
With a special focus on public input, the virtual event will include a panel featuring questions about daily life with vitiligo and experiences and perspectives about vitiligo treatment. Each topic will be opened with a panel discussion of those living with vitiligo followed by a deeper conversation led by a facilitator.
To prepare for the event, organizers are now accepting responses to a list of ten discussion questions, provided on their Eventbrite page. Responses are due by February 15th and respondents may be invited to participate in the panel.
Why your attendance matters
Whether or not you feel comfortable being a potential panelist, your presence and participation at this event matters to the future of vitiligo. Dr. John Harris of the University of Massachusetts Medical School’s Vitiligo Clinic and Research Center notes, “If there’s no interest, [the FDA] can significantly impair development of new treatments and make it hard for companies to get approvals. Alternatively, this could show them how much of an impact vitiligo has on people’s lives and get their full support behind trials and new treatments.”
And a precedent has been set. According to Dr. Harris, similar meetings in previous years were vital to developing treatments for and launching drug trials for alopecia areata and psoriasis. “It is probably the most important meeting there is for any individual with vitiligo who thinks new treatments are important and valuable,” he concludes.
Other vitiligo experts share the same sentiment. According to Dr. Richard H. Huggins, dermatologist at Henry Ford Hospital, past similar events have resulted in “significant increases in the quantity of treatments that were produced and in the number of advocacy successes.” He also encourages those with vitiligo to attend the event. “Please register so that you can show the FDA how many people are impacted by this condition and let your voice be heard.
How to sign up
Whether you have vitiligo or are representing someone with the condition, this event is an opportunity to advocate for the future of vitiligo and the possibility of future treatment choices. You do not need to have experience with vitiligo treatments in order to participate.
Makalah Moore is a writer based in Massachusetts who has lived with vitiligo for sixteen years. In her free time she enjoys reading, photography and spending time with friends and family. Find her on instagram @the.moore.you.know.