May 17, 2008

Condition inspires bill

Man helps introduce legislation for those who have alopecia areata

By Shaun Bishop / Daily News Staff Writer

Redwood City resident Matt Kelley has a hairless cat named Harry. For Halloween last year Kelley dressed up as Michael Jordan, and the year before as Mr. Clean - both well-known bald figures.

It wasn't always like this. But then his life changed three years ago, when in the span of six weeks Kelley lost every hair on his body. Eyebrows, eyelashes, a full head of hair - all gone.

Kelley, 41, has alopecia areata, an autoimmune disorder in which the immune system attacks hair follicles, causing hair to fall out.

He has a sense of humor about it now, but the beginnings of the disease sent him into a deep depression.

"I like to think I'm a tough guy that's been through a lot," he said, "but it was just emotionally devastating."

Kelley's efforts to spread awareness of the condition reached the halls of Congress on Tuesday, when Rep. Anna Eshoo, D-Palo Alto, introduced H.R. 5936 so alopecia areata patients receiving Medicaid can be covered for prosthetic hair pieces.

The bipartisan bill would require Medicaid, the federal-state health program, to pay for one prosthetic hairpiece a year for patients with the most severe forms of the condition. Rep. Heather Wilson, R-N.M, is co-sponsoring the bill.

Proponents say those who scoff at paying for wigs for the non-life-threatening condition don't understand the psychological pain it causes.

"Having that hair prosthesis, it's the only thing they can have," said Lisa Butler, vice president of communications for the National Alopecia Areata Foundation. "There is no cure. There is no treatment that works for everybody, and it's just giving them some normalcy again in their life."

An estimated 200,000 Americans have either alopecia areata universalis (loss of all body hair) or alopecia areata totalis (loss of all scalp hair).

Of those, about 5,000 are on Medicaid and would benefit from the legislation. Butler said hair prostheses, which are custom-made, can cost $1,000 to $3,000, a hardship for some families.

"It is critically important that we act to help those suffering from the condition obtain the supplies they need to effectively manage the condition," Eshoo said in a statement.

Kelley, who founded four sports memorabilia stores in the Bay Area, is not on Medicaid and chooses not to wear a wig. But he said he believes the prostheses would help some people cope with the condition.

"Hair is kind of an integral part of our culture," he said. "It doesn't help you walk like a prosthetic leg might, but it helps you get out the door and deal with society."

At first, Kelley's lack of hair made him feel unattractive and as though everyone was staring at him. But eventually, he took it in stride and now tries to help other people with their struggles.

He goes to a regular support group in San Francisco and attends an annual alopecia conference that draws patients from around the world.

"In a hotel lobby with a thousand bald people, it's like futuristic or something," he said.



E-mail Shaun Bishop at sbishop@dailynewsgroup.com.