Becoming an Advocate for ELSA -Ensuring Lasting Smiles Act
Hi, my name is Brittany Anderson. I had a tooth removed in 1997, when I was 13 years old, and the swelling never went down from the extraction. They then did a biopsy on the bone and I was diagnosed with a bone disease called fibrous dysplasia (FD). FD is a rare genetic disease that develops in utero and takes your normal bone and turns it into fibrous tissue. FD can be in any bone in our bodies. There is no cure and surgery is one way to manage the disease. I have now had 13 surgeries that were to debulk the diseased bone, reshape it and replace it with grafts and hardware.
In 2016, the growth was so significant that it caused all my teeth to become loose, causing me to have to go get them all removed. At 32 years old, this was devastating to me, but I assumed I’d get a new set. I was already accustomed to having to accept changes in my appearance because of FD. I had no idea I would be sitting here 6 years later still without teeth.
During this time, I started to do more with advocacy and in 2019 I began having meetings with legislators to discuss necessary changes in rare disease care. During one of my meetings, I was blessed to meet a young lady and her mother from the National Foundation for Ectodermal Dysplasias (NFED). They told me about the Ensuring Lasting Smiles Act.
The ELSA bill will require all private group and individual health plans to cover medically necessary items and services that are needed to repair or restore congenital anomalies. For me, and so many in the FD/MAS community, that means health insurance would be required to cover dental procedures where FD has affected your teeth. I was mind blown that legislation like this has to exist, but in our world, teeth are considered cosmetic.
After that day, I was on a very personal mission to help get this bill passed. Without this bill, I will likely never have teeth again. People like me don’t just need teeth, we need lifelong adjustments and constant replacements because of growth and medical changes. Ever since, I have teamed up with the NFED, EveryLife Foundation, and the FD/MAS Alliance to help get this bill passed. I am a familiar face in my legislators’ offices and they all know that I will not stop until this bill is passed.
What it’s like to meet with your Representatives:
A few years ago I was very scared of speaking up, but the more I’ve met with legislators the more comfortable I’ve become. To prepare for my meetings, I always take notes on what I need to discuss and write my “elevator speech.” Now I often sign up as “team lead” because I feel comfortable not only planning and speaking but helping others plan their stories as well.
During covid, all of our meetings and events became virtual. I met with the offices several times and really built great relationships with all of the staff of the representatives of my state of Indiana. This summer I was blessed to have my first in-person meeting in 3 years and I was so excited. I had a meeting with my House of Representatives office. His staff and I had met virtually so many times; it was very nice to be in person for the first time.
For the last 3 years, the only ask I have has been for them to co-sponsor the Ensuring Lasting Smiles Act. In this meeting, my local representative voted “no” when this bill was brought to the floor in the House. I wanted to know why he voted no and remind him of the importance of the bill. His staff spoke about sending me an explanation that I have not yet received yet.
After our meeting, I like to ask for a photo with them. Also following meetings, I immediately send a thank you email to the office and remind them again of what it is I am asking and why. That way they know you plan to keep in contact and hope they will do the same.
Here’s What You can Do:
The good news is that this bill was passed this year in the House of Representatives! We now need to make sure this bill becomes a priority with the H.E.L.P. Committee so it can be brought to the floor of the Senate for a vote. Once the Senate passes the bill, it can become law.
There are a few ways you can help us!
1. You can get in touch with me at (firstname.lastname@example.org) and I can get you the email addresses for your Senators. You can email and ask them to help push this as a priority to the H.E.L.P. Committee.
2. You can also email your Senators to ask if they will please cosponsor this bill and ask that they vote yes when the bill is brought to the floor.
3. If you live in Washington or North Carolina, you can email Senator Patty Murray (WA) and Senator Richard Burr (NC). You can only email these Senators if you are living in that state. We want to ask them to please make E.L.S.A. a priority.
When emailing your legislators it’s important to remember that this bill is bipartisan. Keep your email kind and respectful, and leave your political views out of the conversation so the focus remains on the bill. You want to make sure you state why you’re asking them to help you and to keep your ask and story brief.
A bit more about ELSA
Ensuring Lasting Smiles Act HR.1916/ S.754
This legislation would require all private group and individual health plans to cover medically necessary items and services that are needed to repair or restore congenital anomalies. This would include services and procedures that repair or restore any missing or abnormal body part that is medically necessary to achieve normal body function.
4% of children in the US are born with congenital anomalies that affect the way they look, develop and function. Many suffer from severe oral defects, skeletal defects, vision defects, hearing defects, or other loss of bodily functions. Those who do not receive timely, continuous care for their congenital anomalies face long-term physical and psychological injuries.