A Dream Come True?

Lucy and Luke have a medical condition called Ectodermal Dysplasia (medical diagnosis code 757.31 and 759.89). Ectodermal Dysplasia (ED) is typically covered by medical insurance until it affects anything inside the mouth. At that point, most medical insurance companies call the effects of the condition dental, or cosmetic and, in most cases, will not pay for the work needed to put the kids right (even though , as stated, ED is a medical condition). The oral aspects of ED affects speech, chewing and can lead to severe problems of the jaw if not addressed. The cost of treating a child with caps, dentures, and, finally implants can be as high as $150,000 (from birth to 21 years). This dollar amount is well outside the financial means of most families. Ironically, if the dental work was needed as a result of a car accident, it would typically be covered.
Lucy and Luke have made this film in an effort to tell the world a little about this rare condition and also to try, in their own way, to help others with the same condition gain access to the medical treatment all these kids so desperately need. As Lucy and Luke's film says, there is a Bill that needs to become Law that will ensure that the medical insurance companies in MA have to cover these kids. If you would like to help in their campaign, please contact your local State Representative and ask them to support this Bill. For further info about ED I have found the National Foundation of Ectodermal Dysplasia to be a useful and helpful source (www.NFED.org).
Thanks for taking the time to watch our video and for reading this description. Lucy and Luke's Dad.

Category:

Nonprofits & Activism

Tags:

• Ectodermal Dysplasia
• Bill
• rare medical condition
• medical insurance
• Lucy
• Luke

[RockTheFacts]

You told your story very well! It is great that you will now get the care you need. It makes no sense that your insurance company won't cover this. I guess the best answer is to allow insurance companies to compete across state lines so that you could choose the company that would cover you. And maybe if they were allowed to compete, more insurance companies would cover it. It seems it would be easier to change state laws than it would be to pass laws forcing them to cover the things they don't.

[chamcham1000]

Thanks for your input. Sadly my Employer chooses our health coverage - so choosing from insurance companies who cross State lines wont help. Also, since medical insurance companies are run as a biz for max profits, there are few incentives for them to do the right thing for these kids. Few parents of kids with ED are successful in persuading insurance companies to cover the oral aspect of this condition, so, if they cant pay themselves, must stand back whilst their child slowly deforms.

[lucyandlukesdream]

Thankyou for your suggestion. We will certainly look into this. We are going to need all the help we can get now that the health insurance reform bill is dying. With that out the way, the insurance companies can continue to deny care to kids like this - but now with even more conviction than B4.

[321projectpat]

i got it to. with the teeth look up.snap on smile. it's $3,000. 4 a full set of teeth look it up i hope it helps bye

[lucyandlukesdream]

Thanks for your comments. Lucy and Luke fight on in case we should lose the insurance we have and to help kids that cant get insurance at all. They are off to Washington DC later this month to state there case and see if they can bring about any changes.

[RockTheFacts]

Too bad you don't have the freedom to choose your own insurance - through your employer. Unfortunately, from what you say not enough companies cover this at all. It seems ridiculous that they should be able to avoid such an obvious necessity. I am glad that your kids were able to make their voices heard and get the treatment they need. Maybe when they are finished you can post another video of them - you should even consider making it public to make more people aware.

[lucyandlukesdream]

Thank you for your comments. Your kind words are really appreciated. Please feel free to post our links to more sites. The more exposure we got, the better. Our fight continues to make medical insurance companies help cover the costs of the oral aspects of ED. We all know its the right thing to do - but the wheels of Government and commerce turn slowly. We will post updates as they come in. Thanks again.

[AnthonyNYC7]

I loved your video, you both did an awesome job! I can't wait to show it to my 2 daughters in the morning, I almost woke them up now to see. One of my daughters also has ED. I will be posting your link on a few sites for more exposure. You both are way too cute!!!