Ectodermal Dysplasias Advocacy Day approaches quickly and we need you, our National Foundation for Ectodermal Dysplasias (NFED) family, to be there. We try time and again to be advocates to all members of the NFED. But only you and your family are the ones who can make a difference in the lives of people affected by ectodermal dysplasias across America this July.
Our Family-Driven Advocacy Committee Chairs, Becky Abbott and Beth Pond, did a wonderful webinar explaining Ectodermal Dysplasias Advocacy Day and why you are the ones we need to advocate to legislators. Here are five of the reasons they gave:
1. You need treatments for yourselves and your children.
If you are reading this, chances are you know exactly what it is like living with ectodermal dysplasia or caring for a loved one who is affected. The procedures and financial struggles of getting teeth are painful and testing. The NFED was organized to help you through these trying and difficult times. While we provide the services, advice and connections you need, we can only do so much to reduce the cost of your dental implants and other medical procedures.
You need teeth to live, but the cost of having teeth seems to rise every day. No one should have to survive without teeth because of costs. This leads us to the next reason you should be at Capitol Hill on July 19:
2. You are tired of fighting insurance companies for medical care.
Many families in the NFED have fought tirelessly against insurance companies to cover the costs of dental implants and dentures. But, the insurance companies insist these procedures are cosmetic and not essential to life.
Beth explained to us in the Advocacy Day webinar that the companies will cover expenses for those who lose teeth in an accident, but not for those who were born without teeth because of ectodermal dysplasia. Susan Barbey’s Health Insurance Claims and Teeth 101 can help smooth the frustrating process of making an insurance claim for dental procedures. Yet, the process may still prove to be fruitless.
You know this unfair system. You are tired of being pushed around and told that you or your child’s teeth don’t matter. We need to stop fighting this endless fight on the state level.
3. We need to take your needs to the federal level.
Becky Abbott had had enough of arguing with her insurance company over her son’s need for teeth. She had sent letters to her state legislators, but it seemed like they weren’t being heard. Finally, she and her son, Aidan, went a few times to Capitol Hill to meet with their federal legislator. After Aidan shared his story, their U.S. Senator became sympathetic to their cause. By keeping in touch with their senator, they now have one ally in their corner who is willing to help families with ectodermal dysplasias and put an end to the insurance coverage battle on a national scale.
If there are allies on our side on a national level, we will no longer have to battle our insurance companies for the treatments you need. The more allies we have, the more likely we are to change laws, and therefore lives across the country. But first,
4. We need to educate our legislators about ectodermal dysplasia and how it impacts our lives.
The federal legislators don’t know anything about ectodermal dysplasia or the struggles that come with it. The biggest part of Ectodermal Dysplasias Advocacy Day is showing your legislators why they should care about your cause. They need to know about the symptoms, medical issues and monetary struggles you have. They don’t understand why it is so necessary to change the laws surrounding ectodermal dysplasias (which are congenital anomalies) within health insurance.
Right now, the biggest problem we face is ignorance on a federal level. The NFED can provide information to our legislators about this problem, but only you can provide the emotions and the personal touch necessary to sway their approval, which leads to the final reason we need you at Advocacy Day:
5. Only you can share your story.
Beth said the NFED can share “nothing about us without us.” The NFED is nothing without the families we serve. We cannot speak on your behalf because your story will lose the personal meaning it needs to influence our legislators.
If you and your family come to Advocacy Day, your legislators will come face to face with your problems and better understand what it is like to live with ectodermal dysplasia. Your story has the power to change your life, the lives of others around the country and the lives of all people born with ectodermal dysplasias in the future.
Changing laws means changing lives. Your NFED family needs as many people as possible to change the laws governing insurance companies so you can receive the medical treatments you deserve. We need you and your family on Capitol Hill on July 19. Only you can make a difference.