We have exciting news for families affected by ectodermal dysplasias in the United States. ELSA took another leap forward!

The Ensuring Lasting Smiles Act (ELSA)  was introduced in the 116th Congress today in the Senate and House with bi-partisan support. Sen. Tammy Baldwin (D-WI) and Sen. Joni Ernst (R-IA) introduced and co-sponsored the bill (S.560) in the Senate.  Rep. Collin Peterson (D-MN) and Rep. Denver Riggleman (R-VA) introduced and co-sponsored the companion bill (H.R.1379) in the House. We are incredibly grateful to these four as well as the other legislators who also co-sponsored.

ELSA was originally introduced last August. However, it didn’t pass in the 115th Congress before it closed on December 31. Therefore, we had to start over in re-introducing the bill to the new Congress which started in January.

We also had to identify a new legislator to co-sponsor ELSA in the House since one of the original co-sponsors was not re-elected. We are grateful to NFED dad and Virginia state lead, Kevin Koser, who was instrumental in bringing Rep. Riggleman on board. You can watch Rep. Riggleman discuss ELSA on the House floor and how it will impact Kevin’s son, Kannon.

Thank You, Sen. Baldwin

Senator Tammy Baldwin and Mary Fete

Since day one, Sen. Baldwin has and continues to be our leader in Congress. She has been driving ELSA forward. She took action after getting to know Aidan Abbott, a 14-year-old advocate affected by x-linked hypohidrotic ectodermal dysplasia.

Aidan Abbott visits with Sen Tammy Baldwin and thanks her for reintroducing the Ensuring Lasting Smiles Act in the Senate today.

Here’s why Sen. Baldwin has reintroduced ELSA in the Senate.

Aidan’s story has inspired my work on this issue to guarantee that individuals born with congenital anomalies have access to the comprehensive health treatments and coverage they need and deserve. Despite covering all of his other medical care, his family’s insurance continues to refuse to cover his dental care needs, forcing them to spend thousands of dollars out of their own pockets. That’s why I have crafted bipartisan legislation that will close this loophole and make sure families like Aidan’s can get the health care they need at a price they can afford.

Why ELSA is Important for Your Family

ELSA is federal legislation that would require all private insurance group and individual health care plans in the U.S. to cover medically necessary services resulting from congenital abnormalities. The bill language specifically states ectodermal dysplasias.

For our families, this means your health insurance would provide coverage for BOTH your medical and dental care that is medically necessary to repair a congenital anomaly.

Need dentures or dental implants to replace or restore teeth missing due to ectodermal dysplasia? Your insurance would cover it! No need to remortgage the house to pay for it. No more living without teeth because you can’t afford it. No need to appeal claim denials for years. Can you even imagine? We can and that’s why we won’t stop till ELSA is passed!

ELSA Helps More than Ectodermal Dysplasias

But, it’s important to understand that ELSA covers many more conditions than just ectodermal dysplasias. It provides coverage for all congenital abnormalities! According to the Center for Disease Control (CDC), one in 33 babies is born with a congenital anomaly.

Because ELSA covers all congenital anomalies, we have been collaborating successfully with other organizations whose memberships would benefit. Twenty-eight organizations, such as the National Organization for Rare Disorders and the American Association of Oral and Maxillofacial Surgeons, have already signed on. This is great news! Working together, we are stronger.

What You Can Do to Help Get ELSA Passed

Join Adam Berstecher and others in advocating for super smiles!

Register as an Advocate

Would you like to see ELSA become a law? We know you do! And we’ve made it easy for you to do your part to make it so. Take just a minute to fill out this form so we can send you emails when it’s time for you to take action.  Even if you receive other emails from us, if you want to receive all the news about ELSA, you will need to register as an advocate.

Register as an Advocate

Contact Your Senators and Representatives

Getting this bill passed into law takes work. It requires all of us to do our part. If you have never emailed or called your legislators, our advocacy tool makes it super easy. All you have to do is fill out your name and address.  We have a pre-written message for your email message. You simply need to add a few lines to explain your story. Hit send.

With this tool, you can also choose to call your legislators. It automatically connects you to your legislators. You can choose to use the script provided or one of your own.

It takes just a few minutes. Head over there now and ask your lawmakers to co-sponsor ELSA!

Ask Congress to Support ELSA
We have 149 people who are sharing ideas and supporting each other in our private Facebook group for ELSA Advocates. Come join the fun!

Join Our Facebook Group for Advocates

Another great way you can keep up-to-date with ELSA and share ideas with other advocates is to join our private Facebook group. Our advocacy team and state leads like Laura Steyer and Beth Orchard post about what they are up to and give tips on what to say, how to schedule meetings with your senators and representative and more. We also post the latest updates in the group.

Join the Conversation Now

2019 Advocacy Day on Capitol Hill LogoRegister for NFED Advocacy Day on Capitol Hill

Do you know what’s even better than emails and phone calls? Visiting your legislators and their staff in person! We invite you and your cute kiddos to attend NFED Advocacy Day on Capitol Hill on Wednesday, July 17 in Washington D.C.  Don’t worry if you have never done anything like this. We’ll spend July 16th training you on where to go, what to say and what to expect. You can apply for a travel stipend, too, if you need assistance in getting to Washington D.C. Who could say no to our youngest advocates? Their stories – and smiles – are powerful. But, we need you to be there to tell them. Just ask teen advocate, Aidan Abbott, who can give you 10 reasons why kids should advocate.

Sign Up to Come to Washington

Our Vision

We have about two years to get ELSA passed in this Congressional session. The sooner we can get it passed, the sooner our families get dental treatment. The reality is that it’s going to take more than one email, more than one phone call. That’s just step one. We are asking you to build a relationship with your legislators. Get to know them. And keep talking to them.

ELSA has been reintroduced.  Let’s get this done, together. Go, advocate!

2 comments on “ELSA Reintroduced in Congress”

  1. 1
    Nathan Zavala on February 26, 2019

    I just came across this website and was wondering if anything has come of this and if I can get any information that can help my condition.

    1. 2
      Jodi Edgar Reinhardt on February 27, 2019

      Hi, Nathan. This bill was just introduced yesterday. Our next steps are to work to get this passed. Can you tell me what your condition is? we encourage you to review our website at https://www.nfed.org. We have extensive information about the ectodermal dysplasias. You can also give our office a call at 618-566-2020 and ask for Kelley. She can discuss with you in more detail your condition, treatment information and programs we offer. We look forward to hearing from you! ~ Jodi, NFED, Director, Marketing and Communications

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