Aidan Abbott was born with a rare disease, but insurance has called procedures ‘cosmetic.’
Aidan Abbott suffered the first few years of his life with stomach aches, fevers and constipation, among other issues, with no clear cause. It wasn’t until he was 4 or 5 years old that doctors finally diagnosed the root of the issues: x-linked hypohidrotic ectodermal dysplasia, a rare congenital anomaly, or birth defect.
“Since that day, we have had to struggle for insurance coverage for the repair of his congenital anomaly,” said Aidan’s mother, Becky.
He was born without most of his teeth, resulting in trouble chewing and speaking. Those issues can snowball into stomach aches and constipation from undigested food and even bullying for his different appearance and manner of speech.
Aidan, who lives in the Washington County town of Slinger, has endured hundreds of tests, studies, procedures and counseling sessions as doctors work to treat his dysplasia and help him lead a normal life.
Insurance has repeatedly denied covering medically necessary treatment, Aidan’s parents say, because the company labeled Aidan’s issues as “cosmetic.”
“He’s had to go through so much just because our insurance company didn’t want to pay for the treatment that was suggested, which was a prosthetic denture in the beginning,” Becky said. “We had to fight to get that covered. If the treatment is delayed or denied, then our kids end up getting secondary health issues, which end up costing tens upon tens of thousands of dollars, which insurance ends up usually paying for anyways instead of paying for the original treatment.”
Now 15, Aidan has become an advocate for himself and the thousands of others diagnosed with congenital anomalies. He consults with U.S. senators and representatives, sharing his struggles and asking for their support for a bill he helped create: the Ensuring Lasting Smiles Act, authored by Democratic Sen. Tammy Baldwin.
The bill, ELSA for short, would require insurance providers to cover procedures for medically necessary treatment of all congenital anomalies. About 120,000 U.S. babies — or one every 4½ minutes — are born with congenital anomalies each year, according to the Centers for Disease Control.
It is estimated that 3.5 in 10,000 newborns are affected by ectodermal dysplasias — an umbrella term for about 180 different ailments — according to the National Foundation for Ectodermal Dysplasias. Becky Abbott has served as the organization’s manager of treatment and research since January 2019.
“This shows not only me but others how to help the world and how to care for other people and help other people,” Aidan said of the bill Friday, sitting in his home in Slinger, a village of about 5,000 roughly 35 miles northwest of Milwaukee.
ELSA has garnered sweeping bipartisan support since Aidan first approached Baldwin’s office with his story in 2016. A total of 273 U.S. representatives and 37 U.S. senators have signed on as co-sponsors.
More than 40 organizations have endorsed ELSA, including the Academy of General Dentistry, American Dental Association, American Academy of Pediatrics and American College of Surgeons. The family is optimistic that support will continue to increase until the bill is ultimately passed.
“People need their teeth to speak and eat and talk decent and be able to digest their food,” said Aidan’s dad, Tom. “A lot of people are really shocked. They don’t understand why this is something that is not being covered, or why they are making families jump through so many hoops.”
In a February 2019 statement announcing the bill’s introduction, Baldwin called the coverage gap a “loophole” that needed closing. This loophole has cost families like the Abbotts thousands of dollars in unfair expenses, she said.
Aidan wants to go to college to be an anesthesiologist, but his parents have had to make hard choices between putting money into his college fund and paying their son’s ever-increasing medical bills.
“If expenses get too much at some point, we may have to sell our house,” Becky said, noting that expenses can total as much as $150,000 for procedures over a lifetime. “It’s an important decision that families have to make, because your kids need to be able to chew and swallow and speak, and if they can’t then they’re not going to be able to thrive.”
Dilemmas like these are what drive the family to push for change. Becky said she has encountered families who have already reached the point of having to make the hard choice of selling a house or a car.
The Abbotts, along with 7-year-old Ryder, the youngest of the family, take regular trips to Washington to pitch the bill to lawmakers. Aidan takes the lead and simply informs lawmakers of his struggles.
“If it’s only one voice, that’s probably not going to be heard,” Aidan said. “But as soon as you get someone to actually listen to you and help you, it just launches off from there.”