The Global Vitiligo Foundation will host a Vitiligo Advocacy Day at the United States Capitol on Wednesday, Oct. 4.
The first lobbying day dedicated specifically to vitiligo, the event will focus on opportunities for doctors, patients and supporters to meet with federal elected officials on Capitol Hill to lobby for vitiligo funding. Patients will be split into groups and divided by state and geographic area to visit with their district’s representative. An anticipated dinner gathering is planned for the evening of Tuesday, Oct. 3 for any guests who arrive early. Location and further details will be available soon.
“We need more research funding, legislation to protect the patient-physician relationship, reimbursement for expensive topical medications, access to care with phototherapy for vitiligo and a number of other numbers,” said Desai. “The only way to get this is through face-to-face advocacy efforts with congress and senators. We can increase public awareness, but we have to increase the awareness of our elected officials since they are the decision makers.”
While dermatologists and patients representing vitiligo have lobbied before, this will be the first event dedicated entirely to this effort. And patients with vitiligo will make all the difference.
“To have a vitiligo patients with the disease in their offices, staring them in the face and showing them that this disease is front and center – that is so powerful,” said Dr. Seemal Desai, dermatologist and Founder and Medical Director of Innovative Dermatology. “These officials need to be reminded that vitiligo patients are their constituents.”
The event is organized by the advocacy committee of the Global Vitiligo Foundation, which is charged with the following: 1) Help educate, advocate and promote education and awareness of vitiligo to local, state and federal government entities, insurance companies, third party payers, and special interest groups. 2) Increase awareness of vitiligo as a disease, its treatment, and patient related issues to policymakers through efforts of advocacy and by combining the efforts of vitiligo clinicians, researchers, patients, support groups. 3) Have a continual and ultimate goal of finding a cure for this devastating disease.
To RSVP for the event, please email email@example.com so appointments can be made for the congressional visits. For questions, contact Vicki Tiahrt at firstname.lastname@example.org or Dr. Desai at
email@example.com. You can also follow Dr. Desai on Twitter at @SeemalRDesaiMD.
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.