Only Eleven Months Remain

to get the
Ensuring Lasting Smiles Act (S.560/H.R.1379)
Signed into Law

Your Involvement Right Now is Critical

By Susan M. Barbey

Ask Yourself

Do you have a congenital anomaly?
Do you love someone with a congenital anomaly?

Health Plan Benefits – Congenital Anomaly – The Facts

Some congenital anomalies result in body parts that are absent/malformed. While the 50 state congenital anomaly health insurance laws require necessary medical care and treatment to “restore and improve function” (as do many employer-sponsored self-funded plans), these state laws (and self-funded plans) fail insureds in two fundamental ways:

  1. health plans routinely cite inappropriately applied dental exclusions to auto-deny covered treatment when the affected body part is teeth and associated structures;
  2. health plans, in the later stages of reconstructive surgeries, when function has been restored/improved and the goal shifts to achieving a “normal appearance”, benefits are auto-denied claiming the treatment is “cosmetic”.

If you are a parent fighting for health benefits for your child, you may be fighting for an average of “one year per claim”. You may very well lose your appeals (along with your mind) and be on this merry-go-round for as long as your child is covered under your Health Plan. This process repeats, generation after generation.

If you are a young adult with a congenital anomaly, you can secure your future health benefits TODAY, and for those of your children – by getting involved right now.

This Law is for You
Your Involvement Right Now is Critical

The Financial Impact

Where will you get the money to pay for unpaid medical care and treatment?

The Emotional Impact 

Immeasurable on you, immediate and extended family.

This Law is for You
Your Involvement Right Now is Critical

This is Your Call-to-Action

Going forward, only YOU can get us over the finish line. You must reach out to your lawmakers in Washington D.C. right this minute and ask them to cosponsor this bill. They must hear directly from YOU.

If You Don’t Think Your Voice Matters — Think Again

The hands of a few people have been doing the work of many. Together, we have 284 (out of 435) U.S. House and 37 (out of 100) U.S. Senate members as cosponsors on this bill.

Our Most Reachable Goal at This Moment

We need only six more U.S. representatives in the House, taking us to 290 cosponsors and our bill starts to move. Act right now and help get this bill to 290. We’re almost there.

This Law is for You
Your Involvement Right Now is Critical

This is What You Need to Do Right Now

  1. Take 30 seconds and send the prepared message to your lawmakers in Washington to cosponsor S.560/H.R.1379.
  2. Join the National Foundation for Ectodermal Dysplasias’ Ensuring Lasting Smiles Act Advocates private Facebook Group so you know what’s going on and can take action when asked.
  3. Register as an advocate and take immediate action (the NFED makes it easy for you) when asked.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.

Margaret Mead

Susan M. Barbey is a guest blogger, friend of the NFED and a former Health Insurance Regulatory Analyst.


6 comments on “This Law is For You”

  1. 1
    Penny Mallow on February 11, 2020

    My daughter has Witkop Syndrome. We are looking at $30,000 in dental reconstruction after dental insurance is applied. To date our health insurance has not approved our claims.

    1. 2
      Jodi Edgar Reinhardt on February 12, 2020

      Hi, Penny. We are sorry to hear that you, too, have never received health insurance benefits for your daughter. It’s incredibly frustrating, isn’t it? We hear you. We thank Susan for posting links to what we were going to share with you. We do have resources to help you. Don’t hesitate to call our office to talk to a staffer who can help, too. 618-566-2020. Good luck, Jodi, NFED, Director, Marketing and Communication

  2. 3
    Susan on February 12, 2020

    1) Go here on the NFED website for invaluable information on how to file a claim and win (copy and paste). https://www.nfed.org/blog/health-insurance-claims-teeth-101/ 2) Register for the Webinar tonight Feb 12, 2020 on HOW TO FILE A CLAIM AND WIN (copy and paste) https://www.nfed.org/events/how-to-file-your-ectodermal-dysplasia-insurance-claims-like-a-pro/

  3. 4
    Kathy Hanna on February 14, 2020

    Our daughter, now, 37, was told she only has “5” permanent teeth!
    After $100,000, for TOP implants …that have been less than a blessing for her, since have had a lot more work done on her dime, and still has never been able to do anything about her lower teeth.

    1. 5
      Susan on February 14, 2020

      Have your Daughter: 1) Go here on the NFED website for invaluable information on how to file a oral claim and win (copy and paste). https://www.nfed.org/blog/health-insurance-claims-teeth-101/ 2) Go here and Download the Tool Kit for her to furnish to her oral care providers on how to file Claims correctly and get paid. (copy and paste). https://www.nfed.org/blog/health-insurance-claims-teeth-101/ 2) # Good luck

    2. 6
      Jodi Edgar Reinhardt on February 17, 2020

      Hi, Kathy. It’s incredibly frustrating isn’t it? We feel your pain and we are so sorry to hear about what your daughter has had to go through. In addition to the links Susan Barbey was kind enough to share to the insurance resources we offer on our website, please know that our staff can work with your daughter, too, to help her through the insurance process should she want it. We are here to help. ~ Jodi, NFED, Director, Marketing and Communications

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