Are you ready for a wonderful present from all of us at the NFED? Drumroll, please…

Senator Tammy Baldwin of Wisconsin will introduce a bill to the United States Senate in early 2018 calling for health insurance benefits for the dental care of ectodermal dysplasias! She and her team have written the legislation. We will share with you exactly what it says once she formally introduces the bill.

If you have been following our communications, you know that we have spent much of this year advocating for such a law and taking the early and necessary steps in that process. Many of you made our first Ectodermal Dysplasias Advocacy Day on Capitol Hill a huge success. Others of you participated in our Autumn is for Advocacy campaign and visited your federal legislators back in your own communities. You were successful in getting bi-partisan support for the house resolution (H.Res.464) about ectodermal dysplasias. All of these efforts have paid off! Thank you.

So, what do we need you to do now?

Nothing. Until Senator Baldwin introduces the bill, you do not need to do anything. This is likely the only time that we are NOT asking you to do something. Do not reach out to your senators or representatives right now. Watch for our communications in early 2018. When we tell you that Senator Baldwin has introduced the bill, then we will need you to take action – immediately and often.

Until then, enjoy the holidays! The road ahead to becoming a bill is still likely to be a challenging one, and perhaps a long one. It’s hard to know.

We hope that you are as happy as we are that we made another leap forward towards a law – a law that, if passed, means families in the United States who have ectodermal dysplasias will no longer have to go without dental care because they can’t afford it. They will no longer have to spend years in appeals to insurance companies to get benefits. They won’t have to fight for benefits to replace teeth due to birth that others automatically get due to injury or accident.

We thank our Family-Driven Advocacy Committee. These volunteers are tirelessly working on your behalf. They are NFED families who are dedicated to this cause.

We thank Senator Baldwin and her office for believing that our families deserve not only healthy smiles but the benefits to pay for them. Together, we are committed to seeing that the bill does indeed become a law. We promise you that.

13 comments on “Our Gift for You: A Major Advocacy Announcement”

  1. 1
    Kim Brumfield on December 14, 2017

    This is a step in the right direction! My son needs 4 implants and my daughter needs 11. We are just now paying for my son’s first 2 implants. The maximum yearly dental benefit doesn’t even cover 1 crown. It’s ridiculous that medical denies when this is clearly a medical condition! Thank you!

  2. 2
    Amanda Snyder on December 14, 2017

    Thanks so much for your advocacy! This is sorely needed. I’m happy to help in PA when the time comes.

    1. 3
      Jodi Edgar Reinhardt on December 18, 2017

      Great, Amanda! We look forward to your help. ~ Jodi, NFED

  3. 4
    Debbie & Bob Reed on December 14, 2017

    This brings tears to my eyes! So much work for all Our NFED Families! Let us know the the step! Keep smiling!

    1. 5
      Jodi Edgar Reinhardt on December 18, 2017

      Thanks, Debbie and Bob. As soon as we know when Senator Baldwin is introducing the bill, we will let you know what we need you to do! It will take all of us to advocate and often to be successful. ~ Jodi, National Foundation for Ectodermal Dysplasias

  4. 6
    Michelle Ball on December 14, 2017

    This is exciting news for everyone! My daughter had her 3rd surgery 2 days ago and had all her titanium implants placed. Next year we have to pay for all the crowns, my estimate is over $55,000. Not even sure how we will do it yet but I pray this bill becomes a law so no family is financially burdened like this. Like most of you, after providing 3 letters of medical necessity, insurance denied us. Only a federal law would help as my company’s policy is self funded so they are untouchable. Been fighting for 5 years and they will cover a max of $2000 a year, since they view ED as dental. Thank you to everyone who worked so hard to make this happen. My daughter’s first surgery was the week of the family conference or we would have been there. Y’all and all the kids with ED are my heros! xoxo

    1. 7
      Julie Yost Kennedy on December 15, 2017

      I’m sure you have already talked to the president of human resources and benefits? My company was also self-funded and that is exactly why my kids were covered. Blue Cross and Blue Shield of Iowa denied it and my company actually wrote a rider into the policy to get it covered. (Just an idea in case you haven’t already done that.)

  5. 8
    robin high on December 15, 2017

    Thank you so much for your hard work. My Grandson will be starting the dental process soon. It breaks my heart to see what these families have to go through

    1. 9
      Jodi Edgar Reinhardt on December 18, 2017

      You are welcome! It has been a team effort and our families have played a big role. It will take all of us to make sure the bill is passed, once Senator Baldwin introduces it next year. ~ Jodi, National Foundation for Ectodermal Dysplasias

  6. 10
    Teasie witte on December 15, 2017

    At what age are these children receiving implants? I have two grandsons who will eventually need that.They are five months, in almost 2 years of age. Thank you all for your courage and hard work. Merry Christmas

    1. 11
      Jodi Edgar Reinhardt on December 18, 2017

      Hello Teasie. Our experts recommend that individuals wait until their jaw has fully grown before getting dental implants. We have a great guide that they wrote which talks the types of dental treatment they recommend at each age. You can read this guide here: https://www.nfed.org/learn/library/parameters-dental-health-care/. ~ Jodi, National Foundation for Ectodermal Dysplasias

  7. 12
    WENDY PATNODE on December 28, 2017

    I m so very happy to know that someone truly ,deeply cares!! Thank you very much for everything!!!!

  8. 13
    Richard C. Henkel on December 28, 2017

    Thank you to everyone who helped move this dream to the reality of the introduction of a Senate Bill. We fought a hard uphill battle with our insurance companies for limited dental treatment coverage for myself and my daughter. Our need for coverage continues and would be wonderful to know that we could have the support of a new healthcare law.

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