“Advocating for your child is one of the many roles you take on when you become a parent. When you have a child that is medically fragile or was born with health issues, birth defects or special needs that role intensifies. Getting the Ensuring Lasting Smiles Act passed is our way of advocating for our children but we need your help,” said Katie Hopley, a local mother who has been hands-on in pushing ELSA into legislation for the past several years.
The Ensuring Lasting Smiles Act (ELSA) addresses delays and denials in insurance coverage that prevents children born with congenital anomalies from getting the treatment they need. The bill amends the Public Health Service Act, the Employee Retirement Income Security Act of 1974 (ERISA) and the Internal Revenue Code of 1986, to require that group and individual health insurance coverage, as well as group health plans, provide coverage for treatment of congenital anomalies on a federal level.
The distinguishing factor with ELSA is that it addresses self-funded insurance plans - which are the majority of employer group plans. While there are statutes in all 50 states that require congenital anomalies to be covered by insurance providers these laws only protect families that do not have self-funded plans. The loophole that allows insurance companies to systematically deny claims made on self funded plans is ERISA; ELSA will change the language of this tax code to make it a requirement of self-funded plans to cover congenital anomalies. The Ensuring Lasting Smiles Act was originally introduced to the 115th congress. The push to change the current legislation is led by the National Foundation for Ectodermal Dysplasias.
“We have been working to get ELSA passed for around four-and-a-half years now. The first time we went to Washington, DC, to march on Capitol Hill, in an attempt to get the bill passed through the House and the Senate, was in 2017. Several hundred individuals participated,” explained Hopley, a single mother with two children that have been diagnosed with Ectodermal Dysplasia. We were making significant progress then the COVID-19 pandemic stifled our momentum and we lost a lot of our cosponsors after the election.”
The bill was reintroduced to the 117th Congress on Tuesday, March 16, 2021. Hopley explained that the campaign currently has 36 senators signed on in support of the bill. They need 67 to have a supermajority. They have 280 representatives that have agreed to back the bill in the House and need 290 for a supermajority. However, the parents fighting to get this insurance loophole closed have been close to success before and are turning to their communities for help.
“Without ELSA, having a child with ectodermal dysplasia or any sort of congenital difference looks like a lot of out-of-pocket expenses for specialists, treatments and hospitalizations,” Hopley explained. “Brookelynn and Nick were diagnosed on the same day, so it felt like a double blow at that moment. It started off at St. Louis Children’s Hospital with an allergist, from there we were referred to two more doctors and then four more and it just kept going. We had probably seen a doctor in every medical field before we were referred to the geneticist that discovered they both have a rare form of ectodermal dysplasia.”
Ectodermal dysplasias are a group of inherited disorders, resulting from altered genes, that cause the ectodermal structures (the hair, nails, teeth, skin, sweat glands and mucous membranes) to develop abnormally. These are spectrum disorders in that they affect each person differently. While the conditions are present from birth they are generally not detected until later in childhood.
“There are over 150 different types of ectodermal dysplasia and my children have an extremely rare form. I hate to use the term lucky, but fortunately the type they have doesn’t affect their dental structures, so we haven’t had to worry about dentures like so many ectodermal dysplasia families do,” Hopley stated. “Nick was born with pectus carinatum (an uncommon birth defect in which the breastbone protrudes outward). He did everything that was recommended to correct it before we resorted to surgery. My biggest concern in wanting to have it fixed was that the protrusion increased the likelihood of a severe break if he were to get into an accident of any kind. Our insurance approved the surgery and everything was ready to go. The day he went in for surgery the insurance company chose to deny the claim, we had no idea that they had denied it, nor did our doctor’s office, until we got home from the hospital and there was a denial letter waiting in my mailbox. Now, I have a pretty substantial hospital bill.”
Hopley isn’t alone in receiving denials from insurance companies or in the overwhelming debt and stress that result from those refusals.
“It is hard and emotional to talk about because we live the struggle of trying not to go bankrupt providing for our children’s medical needs. As a parent you want to get your kids the treatment that they need but you have to ask yourself if you are going to spend $6,000 out-of-pocket knowing there is another $10,000 out-of-pocket expense waiting around the corner,” said Jenny Steele, a fellow ectodermal dysplasia mom that Hopley befriended at an annual convention held by the National Foundation for Ectodermal Dysplasias. “As a mother it isn’t okay for me that parents have to crowd source or fundraise in order for their kids to get their medical needs met. Getting ELSA passed comes down to righting a social injustice. We are trying to right this wrong for our kids and allow an opportunity for anyone that finds themselves in this position to not have to choose between fighting this fight or going without treatment.”
Steele and her husband, Kris, have two children that are diagnosed with ectodermal dysplasias, both of whom have types that affect their dental structures. The couple both have self-funded insurance plans through their jobs; he works for Wells Fargo and she for one of the big hospitals where they live.
“ELSA will cover legislation that closes the loophole that allows insurance companies to deny coverage. The bill is not disease specific because we want all congenital anomalies to be covered,” stated Steele. “Why is it that cleft palate and cleft foot are covered but congenitally missing teeth are not? If I was in some kind of accident and had my teeth knocked out our insurance would cover reconstruction but if I was born with congenitally missing teeth they wouldn’t provide coverage for prosthetics. Essentially, those born with an abnormality are mandated to live without insurance coverage.”
Steele went on to explain that ELSA will likely save insurance companies money in the long run. For example, covering the cost of prosthetics for children with congenitally missing teeth would prevent commonly associated digestive issues and speech impediments - resulting from the physical inability to chew their food and form words properly - and the subsequent need for speech therapy and additional specialist visits.
“We are hoping to get some action in the House by the end of the year,” Hopley stated. “Congressman Rodney Davis has been an advocate of ELSA since the beginning. Any time that we hit an obstacle, like getting someone to cosponsor, we reach out to Representative Davis. He always comes through for us.”
Senators Joni Ernst (Iowa) and Tammy Baldwin (Wisconsin) are the bipartisan bill’s champions in the Senate. ELSA is also backed by big organizations including the March of Dimes, Operation Smile, EveryLife Foundation for Rare Diseases, Genetic Alliance and the National Organization for Rare Disorders, among many others.
“Well, we are kind of harassing them,” Hopley said, with a self-deprecating laugh when asked how the parent advocates were pulling in legislators to support the bill. “What we really need is for our senators in Illinois to cosponsor ELSA. Prior to the last election, every one of our state’s representatives were on board. The only ones missing were our senators. Once a bill reaches the committees they look at how many cosponsors it has and we really need our senators’ support.”
That is where the families fighting for ELSA are asking their neighbors to step in and contact Senator Tammy Duckworth and (202-224-2854), Senator Dick Durbin (202-224-2152), as well as, Congressman Jesús “Chuy” García (202-225-8203), Congresswoman Cheri Bustos (202-225-5905)and Congresswoman Mary Miller (202-225-5271) to request their official support of the Ensuring Lasting Smiles Act.
“We are just doing what any other parents in our position would do, fighting for the best future for our children,” said Hopley. “If ELSA passes the legislation is written with no age limit so that adults that have congenital anomalies in need of repair will retain coverage. This bill won’t just help the children living with congenital anomalies now it will be in place for future generations. Other parents won’t have to deal with what I, and so many families, have to face, medical bills on medical bills in addition to the added stress of having a child who is medically fragile or has a congenital anomaly. The sooner ELSA passes the better.”