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Permalink Reply by BaldGirlsDoLunch.org on March 16, 2009 at 6:12pm

I know that the intent is to be helpful but it's important to understand what this proposed modification to existing legislation is about. This bill is not for "those with alopecia areata" really. Not me and probably not you nor most people with AA you will meet.

This is a bill intended to modify part of the existing Medicaid entitlement of the Social Security Administration which would provide a prosthesis to the minuscule number of people who satisfy both these conditions for starters:

1 ) receiving Medicaid ( poverty level, state administered health insurance)
and 2) are diagnosed with alopecia universalis, totalis or physician documented necessity


Thea
http://www.baldgirlsdolunch.org where medical updates in our blog keep the alopecia areata community in the information loop.

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Permalink Reply by BaldGirlsDoLunch.org on March 16, 2009 at 6:39pm

According to best research guesstimates in real people the number of Medicaid recipients this would potentially affect equals one-tenth of 1% ( .1 %) of the total number of people estimated to have a lifetime case of any form of alopecia areata - roughly a 1.7% chance of any form of alopecia areata over a lifetime. And that's assuming that the estimate of 5000 Medicaid recipients with AU and AT stated in the legislation is correct.

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Permalink Reply by KL's Mom on March 16, 2009 at 7:24pm

Thanks for your reply. I do understand the specifics and that this will not help many people. I didn't want to go into any great detail and left a loose description because I was afraid I was providing really old news. However, if it helps anyone at all it would be great. My family (including my daughter who has aa totalis) does not qualify for Medicaid, but it is my understanding is that if this bill is passed it is possible that it will help others as because some private insurance companies may mirror the coverage. Anything is better than nothing! Also, I have a family friend with aa universalis who is on medicare. She is excited to see that the condition is even being mentioned in congress, as she has lived nearly all her life with very few people knowing anything about it. Like her, I want to bring awareness in any way I can. Again, thanks for your reply. Hope something good comes of all this.

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Permalink Reply by KL's Mom on March 16, 2009 at 7:41pm

P.S. It was not my intention to provide anyone w/a false hope. I figured you had either 1-already heard of it and knew the specifics or 2-could follow the link and read the exact bill description for yourself! Thanks for taking the time to read my spill! :)

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Permalink Reply by BaldGirlsDoLunch.org on March 16, 2009 at 8:27pm

What is both disturbing and interesting and I think would be useful for better public understanding is for many people from AW to respond to the uneducated and vitriolic postings on the blog link mentioned in the original post.

That the title of that blog "Will Medicaid Pay for Toupees?" is designed to be inflammatory is in need of many rebuttals. Scroll down when you open the page to read the Visitor Comments.

Thea
baldgirlsdolunch.org

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Permalink Reply by KL's Mom on March 16, 2009 at 8:32pm

I agree! It infuriated me in such a way that I haven't even been able to think of a response that wouldn't be deleted by the moderator. It is like a stab to the chest for people to make such demeaning statements. It includes several uneducated responses (including the blog) that are in need of serious correcting!

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Permalink Reply by BaldGirlsDoLunch.org on March 17, 2009 at 10:13pm

This is the exact same bill with a new number. It had zero momentum and died as most bills do in the last congressional session ( the 110th congress) when it was named H.R.5936. Like the approximately 10,000 bills that are introduced in every congressional session, almost none are enacted into law. When it was HR 5936 it never made it out of its first committee, the House Committee on Energy and Commerce, despite having twenty members of the House of Representatives as sponsors.

Now reborn and renamed in the 111th Congressional Session in February, 2009 as HR 1142, it has only seven sponsors compared to last year's twenty and is sitting for review and report by the subcommittee on Commerce, Trade and Consumer Protection. As of today, it is one of at least 300 bills (I counted the list manually) this committee is already tasked with considering in this session which began in January 2009. Easy to see how they get to 10,000 bill introductions.

Thea
baldgirlsdolunch.org

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Permalink Reply by Char on March 18, 2009 at 9:00pm

Well I wrote to my representative and hope he does his job. I am more concerned for the little ones who need wigs and families cannot afford them. They truely deserve this bill to pass.

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Permalink Reply by KL's Mom on March 19, 2009 at 6:53pm

Great Char! I did the same and I urged several of my co-workers, family, and friends to also. It was only reintroduced last month, so now is the time to get everyone on board and that is exactly why I made the first post. Yes, it will take A LOT to get this passed, but that is no reason to give up. Honestly, it has really helped me to stay busy with this. There is a template to help you get started and more information at www.naaf.org for those that want to help. I sent a little email about why it was so important to me and I attached the template to help get others started. Hope some of you can do this too! :)

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