Alopecia World
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Condition inspires bill
By Shaun Bishop / Daily News Staff Writer
Redwood City resident Matt Kelley (who's now a member of Alopecia World) 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.
SOURCE: Redwood City Daily News
Redwood City resident Matt Kelley (who's now a member of Alopecia World) 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.
SOURCE: Redwood City Daily News
Replies to This Discussion
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Permalink Reply by Matt on
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They mispelled my cat's name. It's Hairy, not Harry!
This article ended up appearing in papers all over the US including the Chicago Tribune. I've been getting calls from folks across the US. It's very cool. What's not cool and kind of shoking is some of the comments people post about the article in the on-line versions of these papers . It became very obvious to me that people can't relate to what it is like to lose your hair suddenly and without warning. That seems to be the biggest mission that needs to be accomplished in order for there ever to be funding to find a cure and to help people who need financial assistance in treating this condition. We need to make people understand how hard this is to deal with. Even my own parents and brother don't seem to get it. It's one of those things in life that, unless it happens to you, you can't really relate to how it must feel to another person that it happens to. I won't go into the details of the comments, but many of them were less than sympathetic. I want AAt o be recognized as and funded and eventually cured!
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Permalink Reply by Kimberly Foote on
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Howdy Matt. when and where is this regular SF meeting for our beautiful kind. i wanna b part of an aa club close to home. kim
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Permalink Reply by Fuzzless on
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Hi Matt,
Awesome story! I have AU, but it took about a year for it all to go. I still have a few eyebrow hairs hanging on. It was a rough year - I can't imagine losing it all in 6 weeks!
Thanks for being so public about it - awareness is key.
Gina
PS- love Hairy the cat :)
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Permalink Reply by Char on
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This is awesome! I'm not on Medicaid but it's a step in the right direction~!
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Permalink Reply by JeffreySF on
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Hey Matt,
Thanks for your dedication and hard work on the Bill getting to the Senate.
Way to Go!!!
Jeff
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Permalink Reply by Lee on
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Thanks!! I am going through this as we speak. Im trying to get United Healthcare to cover mine. They only want to give me $500! This will be a long fight...I just hope I win!
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Hang in there, Lee. It gets better. We'll get the government to recognize AU and AT and take it seriously. No person who wants a wig and can't afford to buy one should be left in the cold by our government. This is not a cosmetic issue by any stretch of the imagination.
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Just an FYI...On your taxes you can claim a deduction under medical expenses. Have your MD write you a prescription for a Crainial Prosthesis.
Jeff
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Permalink Reply by Dawn on
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How did you get UH to cover it? My husband's work offers insurance through UH. I was on his insurance at one time and may enroll again. It would be really nice if they could pay a little something.
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Permalink Reply by Carol on
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Hey Matt
Way to go!! I love Hairy by the way - he's adorable! I wish someone would do this in Canada. We don't have medicaid here but our insurance companies could use a wake up call. I also think alopecia should be listed under our disabilities act so we can't get fired (or not chosen for a job) due to discrimination. Keep up the good work!! :)
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Would people on Medicare be eligible too?? I recieve Medicare for heart condition and also have alopecia. It would be nice if they covered this.
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Hey Dawn. If you got to www.naaf.org you can read the actual bill. I believe it would cover people on medicare as well.
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