New year. New Congress. New bill leads. Same advocacy mission: Get the life-changing legislation called the Ensuring Lasting Smiles Act (ELSA) passed so that families with congenital anomalies get the health care benefits they need!

In February, we announced ELSA’s new bill leads for the 117th Congress. Today, ELSA took the next step in its march to passage in the new Congress! Senators Tammy Baldwin (D-WI) and Joni Ernst (R-IA) re-introduced ELSA in the U.S. Senate. Representatives Anna Eshoo (D-CA-18) and Drew Ferguson (R-GA-03) did the same in the U.S. House of Representatives. ELSA will get assigned bill numbers in the coming days.

This important step is the green light we have been waiting for! All systems are go, advocates. It time to speak up for ELSA and often! We will not stop till it’s law.

Record Support for ELSA

Today marks the second re-introduction of ELSA since the legislation was first introduced in 2018. If a bill is not passed in a session of Congress, it must be re-introduced in the new Congress.

In the Senate, ELSA is also led by Senators Sherrod Brown (D-OH) and Lisa Murkowski (R-AK) along with 25 Original Co-sponsors in this Congress. In the House, there are 132 Original Co-sponsors. This is an amazing start! Compare that to last Congress when the bill was re-introduced with three Original Co-sponsors in the Senate and seven in the House.

An Original Co-sponsor is a legislator who has already signed on to the bill at the time it is re-introduced, while a regular co-sponsor is a legislator who signs on after the bill is introduced. It’s fantastic to have this incredible support for the bill right from the beginning.

Becky Abbott is the co-chair of the NFED’s Family-Driven Advocacy Committee, NFED’s Manager of Treatment and Research, and the mother of a son affected by ectodermal dysplasia.

“Our families and advocates look forward to the day when they no longer have to fight for coverage of medically necessary treatments and our children and loved ones receive the treatments they desperately need and deserve. It’s time to get ELSA passed!”

– Becky Abbott

The other co-chair of our Family-Driven Advocacy Committee is NFED dad, Kevin Koser. His son, Kannon, is his inspiration for getting ELSA passed.

I’m so proud of the progress that the NFED, our family advocates, our professional coalition of health organizations, and the bill’s leads have made to advance the Ensuring Lasting Smiles Act so far. In just one full Congressional session, ELSA became one of the most supported health care bills on the Hill. I feel confident that the bill’s support and momentum will continue to grow in this new 117th Congress, ultimately leading to its final passage.

– Kevin Koser

ELSA’s Broad Impact

The National Foundation for Ectodermal Dysplasias (NFED) has proudly led this advocacy effort for the last five years. It was born out of our great frustration. For decades, families with ectodermal dysplasias in the United States were routinely denied medical benefits for the dental care caused by their congenital anomaly. Many went without care while others paid exorbitant prices in an effort to have what many take for granted: a full set of teeth.

While ELSA was inspired by ectodermal dysplasias families, it provides benefits for a much larger population in this country. The legislation would require all private insurance group and individual health care plans to cover medically necessary services resulting from any congenital abnormality, not just ectodermal dysplasias. About four percent of children in the U.S. are born with congenital anomalies that affect the way they look, develop, or function. Many born with congenital anomalies suffer from severe oral defects.

Because of the bill’s wide reach, the NFED has a coalition of 50 other organizations who are also supporting ELSA and advocating for its passage.

Thank You, Bill Leads!

We are grateful to all four of ELSA’s bill leads. We are committed to working side by side with them to help Americans with congenital anomalies get the health care they need. Here’s what they have to say about ELSA.

Senate

Youth advocate Aidan Abbott meets with Sen. Tammy Baldwin to discuss ELSA.
Aidan Abbott not only coined the name of the bill, he also inspired Senator Baldwin to write it.

“Aidan’s story continues to inspire my work on this issue to guarantee that individuals born with congenital anomalies have access to the comprehensive health treatments and coverage they need. 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’m introducing bipartisan legislation to close this loophole and make sure families like Aidan’s can get the health care they need at a price they can afford.”

– Senator Baldwin

Read Sen. Baldwin’s Press Release

Senator Ernst was inspired to lead ELSA because of Jen and Alli Steele.

Senator Ernst said, “Young Iowans, like Alli Steele and many others, have been diagnosed with ectodermal dysplasia. When their families realized the procedures would cost thousands of dollars out of pocket because they weren’t covered by their health plans, they turned to elected officials for help. Their stories and struggles are the reason I’ve teamed up with Democrats and Republicans on this effort to ensure that all health plans cover medically-necessary services related to a patient’s congenital abnormality, including reconstructive surgeries and oral-related procedures.”

House of Representatives

Congresswoman Anna Eshoo (far left) with several NFED family advocates.

“Too many children born with congenital anomalies are denied coverage despite the long-term harm of such conditions. These are children like Rosie, the daughter of a family in my district who has congenital cataracts. She requires contact lenses because glasses aren’t powerful enough, and without these lenses she is blind and will have no chance of ever developing normal vision. “The bipartisan Ensuring Lasting Smiles Act would cover these medically necessary treatment options and close the loopholes insurance companies use to avoid paying for these treatments and services. I’m proud to reintroduce this bill to help keep America’s children healthy and smiling.”

– Rep. Eshoo
Read Congresswoman Eshoo’s Press Release

Congressman Ferguson said, “As a practicing dentist for nearly 25 years, building better smiles was my career, and it continues to be a top priority of mine in Congress. The Ensuring Lasting Smiles Act would require all private, individual health care plans to cover medically necessary dental services, including reconstructive surgeries that are a result of congenital anomalies or birth defects. This life-changing bill will give families the opportunity to save for their children’s futures by addressing a loophole that has long allowed insurance companies to routinely deny oral or dental claims for medically necessary treatments.”

CNN wrote a great article today about our bill. You can read it here. Having both Democrats and Republicans co-sponsoring the bill gives us great hope that we will get ELSA passed in this Congressional session.

Bi-partisan support of this bill continues to be one of its biggest strengths. This will happen! But we still need you to make it so.

Critical Next Steps

URGENT: Sign Up for Day on the Hill

Our next step is a familiar one if you have been following ELSA’s progress for the past few years. We need as many U.S. Senators and U.S. Representatives to co-sponsor the bill as we can. This helps drive action for the Congressional committees to review the bill. There are many new legislators in this Congress who don’t know about ELSA yet. We need your help.

From experience, we know that you telling your personal story is what works. It puts a face and a relationship to the issue. It helps Congress understand the impact ELSA would have on your life and health.

You can tell your story to Congress on Wednesday, April 28 at our Virtual Advocacy Day on Capitol Hill.

It’s free. You spend the day in multiple virtual meetings with other NFED families and ELSA advocates. You will not be alone if others from your state register. We train you on everything you need to know in Zoom webinars and schedule your appointments with your legislators. It’s a super fun – and powerful – day.

We need you. Specifically, we need 500+ advocates from all 50 states for Hill Day and currently have 237. Will you please sign up you and your family members for Hill Day? Encourage your extended family members to register, too, especially if they live in a different area than you do.

Sign Up for Virtual Hill Day

Stay in the Know

Ask Your Legislators to Co-Sponsor ELSA

Now that you are signed up for Virtual Advocacy Day, you can email your members of Congress right now. Use our easy web tool to email your legislators and ask them to co-sponsor the bill. All you have to do is enter your name and address. The email is pre-filled with information. You can add a few sentences about your personal story. The tool will send it to your U.S. Senators and U.S. Representative.

Take Action Today

Join the ELSA Advocates Facebook Group

If you want to follow what happens with ELSA, join the Ensuring Lasting Smiles Advocates group on Facebook. There are almost daily posts about what you can do to help and how the legislation is advancing. You will be inspired by what other advocates are doing and find great support whether you are a newbie or veteran advocate.

Join Facebook Group

Get ELSA News

If you register as an advocate with us, you will receive our monthly ELSA newsletter. You may also get occasional action alerts when we need you to take immediate action.

Register as an Advocate

Let’s Do This, Together

We invite you to take these small but powerful steps. You have the opportunity to be a part of something that will positively impact thousands of families for generations to come!


2 comments on “ELSA Re-Introduced in Congress with An Amazing 161 Original Co-Sponsors”

  1. 1
    Betty hall on March 17, 2021

    What wonderful news! Praying this happens soon! Our granddaughter, Holly Hamann is now 5 years old and has been through so much with her ED.

    1. 2
      Kelley Atchison on March 18, 2021

      We hope so, too! Keep contacting your legislators and spreading the word.

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