All of us at the National Foundation for Ectodermal Dysplasias (NFED) are passionately committed to helping families in the United States get health insurance benefits for necessary medical care and treatment due to congenital anomalies, such as ectodermal dysplasias. The bill to make this happen is the Ensuring Lasting Smiles Act (ELSA).
The 117th Congress started on January 3, 2021. With this change in Congress, the protocol is that ELSA must be officially re-introduced.
If you have followed our advocacy efforts, you know that ELSA had strong bi-partisan support in the 116th Congress with 313 members of the U.S. House of Representatives and 53 members of the U.S. Senate co-sponsoring the bill. Those are extraordinary numbers for a young bill!
New Bill Leads
Our first step this year was to identify two new bill leads in the U.S. House since, unfortunately, Representatives Collin Peterson and Denver Riggleman were not re-elected. On the Senate side, we continue to have our passionate leaders, Senator Tammy Baldwin (D-WI) and Senator Joni Ernst (R-IA), as bill leads.
Sen. Tammy Baldwin with our young advocates on Capitol Hill. 
Sen. Joni Ernst was inspired to help because of Jen and Alli Steele.
We are excited to share with you that Congresswoman Anna Eshoo (D-CA-18) and Congressman Drew Ferguson (R-GA-3) will be ELSA’s bill leads in the House.
Rep. Anna Eshoo 
Rep. Drew Ferguson
Rep. Eshoo is the Chairwoman of the House Energy and Commerce Committee’s Subcommittee on Health. She was instrumental in the last Congress in getting ELSA advanced out of the Energy and Commerce Committee to the full House.
Rep. Ferguson is a dentist, member of the House Ways and Means Committee, and co-sponsored ELSA in the last Congress.
Once the bill is re-introduced, it must be reviewed by the Energy and Commerce Committee, Ways and Means Committee, and Education and Labor Committee before it can go to the full House for a vote. Having our House leads serving on two of these committees bodes well for our bill. We are honored and excited to have their leadership.
Watch this video to hear Kevin Koser discuss our new bill leads and why it’s urgent that you take action. Kevin is the co-chair of the NFED’s Family Driven Advocacy Committee.
You Need to Act Now!
We anticipate that ELSA will be re-introduced very soon. Until then, we need our families and advocates to take immediate action.
Please reach out to your federal legislators (one U.S. House Representative and two U.S. Senators) and ask them to become Original Co-sponsors of ELSA. Our goal is to have as many legislators as possible sign on to be Original Co-sponsors BEFORE ELSA is reintroduced. This helps demonstrate the strong support the bill has.
Co-sponsors do not carry over from the previous Congress. We need all advocates to reach out to their federal legislators with this request. This should be an easy step for all members of Congress who were co-sponsors in the last term.
If they co-sponsored before, we would expect that they would not have issues becoming Original Co-sponsors now. Other legislators who are new or did not co-sponsor last session need to hear your stories, and hopefully they decide to become Original Co-sponsors, too.
You can use our easy advocacy tool to email your legislators today. Encourage your friends and family to do the same. You simply fill out the form with your name and address. We wrote the pre-written email message for you. Hit send!
Yes, it’s that easy. And it will make a big difference. We encourage you to use the tool to email your legislators weekly!
Ask Congress TodayVirtual Advocacy Day – 500 Advocates Needed!
It’s also essential that you participate in our Virtual Advocacy Day on Capitol Hill on Wednesday, April 28. We need at least 500 advocates from all 50 states to return to the Hill (virtually) with us. It’s free. Will you join us?
You and your family can meet with your legislators and/or their staff in tele-meetings or video meetings. Other family and ELSA advocates may be with you in the meetings. You will have a chance to tell your story. As always, we will provide free training so you know what key messages to share and what to expect.
The last four years of Advocacy Days have taught us how important your participation is in getting more members of Congress to sign on. Your story makes all the difference. But, only you can tell it.
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Thank you for this! Who would I ask a question of. It concerns children who are born with low vision or injured and have low vision. Would bioptics be covered by insurance through this law and other low vision services from specialists doctors who work with low vision children. These are needed for them to be able to function in school ultimately drive and work. Would artificial eyes be also covered with this Bill. If you can’t answer my questions would you direct me to somebody who could? Thank you! I already wrote to all my representatives and I am trying to inform his many people as possible. I have a grandchild born with congenital cataracts needs very high priced contacts and glasses. That is how I heard about this bill.
Thank you for reaching out. Yes, we are asking and encouraging all individuals with congenital anomalies to advocate for ELSA.
The Ensuring Lasting Smiles Act provides coverage for the medically necessary repair of ALL congenital anomalies including; oral defects (such as cleft lip or palate, hypodontia, enamel hypoplasia), skeletal defects (such as craniosynostosis), vision defects (such as congenital cataracts or aphakia), and hearing defects (such as microtia). Thank you for your advocacy! If you have additional questions please reach out Becky Abbott at becky@nfed.org.
Kelley Atchison
NFED, Director, Family and Community Programs
My sons vision is also affected so definately Yes between PROSE Lens and surgeries the costs mount