Again, over the past month, we have received numerous calls from individuals who are desperately trying to get insurance coverage for their or their child’s dental treatment. It is exhausting! The fight goes on and on and if individuals are fortunate to get insurance approval, it is a long, tiring fight that takes at least a year. Many of you know this first-hand. Aren’t you tired of this? We are!
We are not going to take this any longer. Earlier this year, I announced that the National Foundation for Ectodermal Dysplasias (NFED) was launching a major advocacy campaign and we planned to tackle state law, state by state. We are also planning an Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19th. Well, our strategy has shifted somewhat.
An Ally In Our Corner
I have some good news for you! We have a very active Legislative Advocacy Committee comprised of moms who are fighting for their children’s well-being, along with a dedicated volunteer passionate about helping all ectodermal dysplasias families. They are dedicated, tenacious and ready to take action to fight for their children’s fair treatment. They have been very busy.
We have garnered the support of a federal senator who is willing to draft a federal bill to mandate medical insurance to cover the medically necessary dental treatment associated with ectodermal dysplasias.
This is HUGE! If we are successful in getting this federal bill passed, ALL insurance policies would have to cover this treatment. Going the state route, self-funded insurance plans would be able to squirm out of coverage as they do not have to follow state insurance laws. This is why we shifted our strategy to the federal level. We know it is a long shot to get a federal bill passed and it is going to be a lot of work.
Right now, we are sitting tight, waiting for further direction from the Senator’s office. So stay tuned. When the time is right, we will need our entire community to jump in and fight for our rights. Then, you can take action.
It is a very exciting time for our community.
Please join me, the NFED and the Legislative Advocacy Committee to make this happen.
- Use the social media buttons above to share this information with your friends, families and contacts. We need everyone on board, if we have any chance to be success.
- If you haven’t already, please sign up to participate in Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19th.
- Use our Advocacy Tool Kit to begin drafting your letter and story. We will let you know when to send it.
Together, we can make this happen!
I am still in the process of fighting to get Jordan’s dental treatment covered. My dental insurance paid about 1000.00, however the medical has picked up nothing, I have sent my first appeal last week, I will keep you posted.
4/4/17: Read the Insurance Tool Kit recently loaded onto the NFED website, written by my SIL, Marci Barbey. Understand what it says and follow what it says. (EVERY NFED member needs to read this BEFORE ever seeking care for teeth or ever file a claim.
I think it would be awesome if we could also fight for the genetic testing portion of us diagnosing our kiddos. It has taken us one year to Fight for coverage and we ended up not getting any of it covered! I think this is an exciting cause and I’m super excited to fight with you 🖤
4/4/17: Read the Insurance Tool Kit recently loaded onto the NFED website, written by my SIL, Marci Barbey. Understand what it says and follow what it says. (EVERY NFED member needs to read this BEFORE ever seeking care for teeth or ever filing a claim.
I have been fighting my insurance company for 4 years to pay for my daughter’s dental treatment. The bill is ~$83,000. Insurance is self-funded and the plan states: ‘Dental implants are not covered for any reason’…it is ridiculous. I can’t believe in this day and age the obstacles I am fighting with insurance that should be in place to help us. A federal mandate would be the best thing for all of our children. I did read the Insurance Tool Kit and have already been implementing many of her suggestions.