Hello, ELSA Advocates and Supporters,
It’s been awhile since we shared an update on the status of the Ensuring Lasting Smiles Act (ELSA), and many of you have been reaching out to us, asking for a status update. It may seem like ELSA has stalled in the 118th Congress. However, we are taking a different approach out of necessity to work behind the scenes to garner as much support for ELSA as possible before reintroduction.
From the start, the National Foundation for Ectodermal Dysplasias (NFED) has taken the lead on the monumental task of getting the ELSA signed into law. The NFED’s leadership team, including the Board of Directors, has allocated significant resources to this effort and continues to provide unwavering support.
We, along with NFED Executive Director Mary Fete and countless advocates, have cultivated lasting relationships with hundreds of Congressional offices and have received feedback and praise that our mindful, grassroots advocacy is the only reason this health care bill has remained bipartisan throughout our advocacy initiative’s journey.
Since ELSA has an inconceivable amount of potential to create positive outcomes within patient and professional communities, the NFED has remained vigilant in maintaining our thoughtful and powerful relationships with key legislative offices to not only protect the integrity of the final bill, but to also do what’s best for communities that will benefit from ELSA.
Following Our Bill Leads
Passing federal legislation is a lengthy process that does not happen overnight. Thousands of bills are introduced each year, and only a small percentage of them make it to the President’s desk to be signed into law. The 118th Congress has proven particularly difficult. Only 49 bills have been signed into law so far.
Our advocacy team continues to work behind the scenes with our dedicated bill leads: Senator Tammy Baldwin (D-WI), Senator Joni Ernst (R-IA), Congresswoman Anna Eshoo (D-CA-16), and Congressman Drew Ferguson (R-GA-03). Their staffs have been working tirelessly to ensure that proper negotiations are taking place to move ELSA forward in the 118th Congress. We are following their lead and allowing them to be strategic and use their expertise to find and pursue the best path forward for ELSA.
We understand that many of you are tired and frustrated. We are, too. But we are committed to advocating and sharing our stories until ELSA becomes law.
To ensure we protect our community and their needs, it’s up to the NFED, ELSA advocates and supporters to stay strong, clear-minded, and finish what we started.
We ask that you continue to Stand Together with us to ensure ELSA becomes law.
Becky M. Abbott & Kevin Koser
NFED Family Advocacy Co-Chairs
I’m curious how many senators and representatives you have helping to push things with ELSA. If I go off of this blog post, it seems you only have four. I bet if you could get more senators and congresspeople to advocate, it would be easier to be recognized. This is a matter of national health and it seems to me that surely you should be able to get more politicians on your side.
Hi Dwayne. Great question.
ELSA advocates and supporters have been able to garner the support of hundreds of Members of Congress to help move the Ensuring Lasting Smiles Act (ELSA) through Congress. We’re grateful for the bicameral, bipartisan support that this life-changing bill has garnered.
-Becky M. Abbott, MPH
National Foundation for Ectodermal Dysplasias
Director, Treatment and Research Advocacy
Hello, I am interested in finding out about the ELSA. I was born with a congenital anomaly and have been doing years of research about my defect.
Hello, Dontayshia. We would love to share more information about the Ensuring Lasting Smiles Act with you. Please contact NFED Staff member, Becky at Becky@nfed.org. Thank you! ~Kelley, NFED Director, Family and Community Programs
Nearly a decade ago, our daughter’s Medical Doctor, Orthodontist, and Dentist became aware that she had a congenital abnormality where she is missing 9 teeth; and were so concerned about her lifelong medical heath, that they wrote letters, and unanimously deemed that future implants would be a medical necessity!
Now that she is of-age for the procedures, our medical insurance has denied coverage…
We are in the process of appealing this…
Do you have any resources that would help with the appeal?
What is the earliest this would be turned into law?
Fittingly, we are from Wisconsin (and so is the insurance company) and this would “Ensure A Lasting Smile” in a Wisconsin resident!
Hello, Andy. We would love to share resources and information with you. Please contact our office at info@nfed.org. Thanks! ~Kelley
I have a repaired cleft palate and bilateral cleft lip. Although repaired after many surgeries, it has been a lifelong journey of dental issues. I have had to pay out of pocket for several procedures involving my teeth. At this point I could have bought two cars. Since my mouth and gums are not easy to work with, it has been very difficult to get the proper teeth and dentist that actually know how to work with this issue. The cost is enormous and now at 77 years of age, I am again facing issues with one of my molars that holds all the top teeth in place. This will be a challenge for my health and eating not to mention the expense.
My reasoning for writing this is personal, but I also want a better way for individuals with cleft palate to have the support needed so that they can have the best life possible. It is through no one’s fault that children are born with cleft palates or other congenital anomalies, so it seems that this bill should pass. The cost of the dental is enormous, and it seems like to most humane thing to do is to ensure that repairs and dental work should be covered by insurance. I am hopeful that ELSA will pass for all the children and adults who need this support in their lives.