SCARBOROUGH, N.Y: Putting a face to a disease has a powerful impact on government agencies, and more than 200 people living with alopecia areata, along with caregivers and members of the research community, came together at a public forum hosted by the Federal Drug Administration (FDA) in early September in Silver Spring, Maryland, to dramatic effect.
There is no cure for alopecia areata, an autoimmune skin disease that causes obvious bald patches on the scalp, eyebrows and other hair-growing areas of the skin. There are treatments that work in milder cases in some patients, but long-range studies are needed to assess the risks and benefits of newer drugs. In the U.S., approximately 490,000 people suffer with alopecia areata today with a lifetime risk to two percent of the population.

Of more than 1,000 diseases considered, the Federal Drug Administration (FDA) selected just 24—including alopecia areata—for meetings, followed by "Voice of the Patient" reports through 2017. The FDA was specifically interested in diseases that have few or no FDA-approved treatments and where daily quality of life is compromised.

The agenda included an overview of alopecia areata and current treatment options, group discussion, and patient and caregiver testimonies.

Thea Chassin, founder and CEO of Bald Girls Do Lunch, a national non-profit, was in attendance as an expert. In 2015, Chassin encouraged BGDL members to write testimonies about the impact of alopecia on their lives, to boost the chances that the disease would be chosen for a patient-focused meeting.

"This was a groundbreaking day to foster understanding of the real-world physical and psychological effects this disease has on the sufferer, family and friends," says Chassin. "This is an important step for decision makers in the governmental regulatory and pharmaceutical industries to learn what treatment benefits matter most to patients."

The FDA is accepting written comments from alopecia patients through November 13, 2017.

(Posted on 10 October 2017, 1675848246 3O238O181O138)