Advocating for Federal Legislation
The biggest complaint we hear from families is that their health insurance company or their employer-sponsored self-insured health plan has denied benefits for necessary medical care and treatment regarding teeth. Our mission is to put an end to this.
Our goal is clear. We want the federal government to pass a law guaranteeing the payment of health insurance benefits for necessary medical care and treatment due to congenital anomaly.
This law will provide coverage from the moment of birth and will consider congenital anomalies and birth abnormalities as an injury or sickness and cover the functional repair or restoration of any body part, including the teeth and the bone that holds them, when necessary to achieve normal bodily function.
Advocating for such a law is going to be a marathon, not a sprint. Our advocacy efforts are family-driven. We will need your help at different stages of the process.
Register as an Advocate
Your first step to advocate for ectodermal dysplasias is easy – and important. Let us know that you are ready to raise your voice for our community by filling out a short form. By doing so, we will email you with advocacy opportunities for you.SIGN UP TO BE AN ADVOCATE [\button]
Ectodermal Dysplasias Advocacy Day on Capitol Hill
We invite the ectodermal dysplasias community to join us on Wednesday, July 18th for our second Ectodermal Dysplasias Advocacy Day on Capitol Hill in Washington, D.C.
Allies In Our Corner
We are excited that Sen. Tammy Baldwin from Wisconsin heard us and cared enough to take action. She understands our challenges, struggling with insurance coverage for medically necessary dental treatment.
Sen. Baldwin has raised awareness for ectodermal dysplasias on Capitol Hill and introduced Senate Resolution 226 (S.Res.226) highlighting key information about ectodermal dysplasias. This resolution will educate our legislators. You can check here on whether or not your senator has co-sponsored S.Res.226.
During the first Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19, 2017, Rep. Jackie Speier of California also introduced House Resolution 464 (H.Res.464) highlighting key information about ectodermal dysplasias. You can check here to see if your representative has co-sponsored H.Res.464.
We have volunteers serving as advocacy leads in the following states. If you would like to be a state lead or want to contact the lead in your state, email Becky Abbott, co-chair of our Family-Driven Advocacy Committee.
Melissa Marconi Wentzel
Erin Bowling, Ann Newlin
Jim Miedema, Beth Orchard
Da’Nella Anderson, Lynn Keach
Christine Gottschalk, Jordan Kahn
Beth Pond, Jonathan Weil
Victoria Sharp-Kaufman, Kerri Fasulo
Kristalyn Pittman, Franki Sebock
Kevin Koser, Christine Gottschalk