Introduction to the Struggle
To prevent pneumonia, Carrie Lazoen says her 2-year-old daughter, Emmalyn, needs a “shaky vest.”
Emmy, as her family calls her, has a rare genetic condition called Aicardi syndrome. The disease — which can shorten life expectancy — affects her brain, causing seizures, vision problems and significant developmental delays. As a result, Emmy can’t walk independently. Everyday activities require careful monitoring. She can’t sit on her own or hold her head up for long.
The Need for a Shaky Vest
A shaky vest, formally called a high-frequency chest wall oscillation vest, vibrates when Emmy wears it to loosen and clear mucus in her lungs.
But Lazoen said it took several months and three denials before the family’s primary health insurance, United Healthcare, approved coverage to rent the vest. In one denial letter viewed by NBC News, dated April 17, United wrote that Emmy’s condition didn’t qualify for coverage of the vest in part because Emmy didn’t get frequent lung infections — precisely what the vest is supposed to prevent.
The Ongoing Battle with Insurance
The episode was just one of many the Lazoens, of Manito, Illinois, have dealt with when it comes to covering Emmy’s care.
“It’s awful,” Lazoen said. “It shouldn’t be this difficult to deal with them when you have a child with disabilities.”
Ultimately, most of the family’s health insurance claims have been approved. But the Lazoens’ story underscores a harsh reality for many families who have children who suffer from a debilitating medical condition. They’re forced to wage two fights: one for their child’s care and another against an insurer’s bottom line.
Seeking Help
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Some claims approved one month are denied the next, Lazoen said; other times the same claim is denied up to four times. These include claims for medical equipment, as well as regular physical and occupational therapy visits. Lazoen said that, overall, most of the claims she submitted were initially denied by United. They sometimes had to turn to their secondary insurance, Blue Cross Blue Shield, for approvals, Lazoen said.
Specific Denials and Their Implications
In one instance, United denied coverage for a special safety chair to help Emmy sit upright in a bathtub.
“I can’t just put her in a bath,” Lazoen said. “She could drown.”
She said the chair’s manufacturer told her that her plan didn’t cover the cost of the chair.
United “said that just wiping her down was sufficient,” Lazoen said. “I was appalled. I didn’t know how to respond.”
After another prolonged back and forth, United granted an exception and covered the chair, according to Lazoen. But when Emmy outgrew it and needed a new one that cost $1,800, the Lazoens opted to skip the hassle of securing another exception from United and paid for the chair with donations coordinated by her husband’s employer.
Response from United Healthcare
NBC News reached out to United multiple times after interviewing the Lazoens. A spokesperson initially said in a statement: “We empathize with anyone caring for a loved one with complex medical needs, and we’re grateful to know that Emmalyn has continued to receive the equipment and care she needs. All of her claims have been promptly approved upon receiving the correct coding or documentation from her providers.”
The day the Lazoens’ story was set to run on “Nightly News,” United responded and said the company now has provided “a dedicated case manager who is familiar with Emmalyn’s needs and can help support the family going forward.”
According to the new statement, United said the Lazoens’ health plan covers the purchase of the shaky vest after three rentals, and is “working with the provider to facilitate that purchase.”
The Medical Perspective
Dr. Wendy Burdo-Hartman, one of Emmy’s doctors and a neurodevelopmental pediatrician at the University of Illinois College of Medicine in Peoria, said: “These denials force parents to fight for things no parent should have to.”
Burdo-Hartman said her own staff spends a significant amount of time each month trying to work with insurance companies to cover her expenses.
“We could spend eight hours or a whole day working on getting a letter of medical necessity together, looking into why it was denied, talking to the vendor,” she said. “It’s incredibly frustrating. We’re not asking for things that are out of the normal, standard of care for kids who have these kinds of disabilities.”
Understanding Aicardi Syndrome
What is Aicardi Syndrome?
Aicardi syndrome is an extremely rare condition that results from a mutation on the X chromosome. The defect doesn’t run in families; it happens randomly, according to the Cleveland Clinic.
The condition, diagnosed in a few thousand people worldwide, almost always occurs in girls. The mutation results in miscarriage for baby boys in utero, since they have just one X and one Y chromosome. Girls can survive because they have a second, healthy X chromosome.
But they’re born with severe brain malformations, eye abnormalities and a debilitating form of epilepsy called infantile spasms.
Symptoms and Prognosis
“These children can have dozens of seizures a day and face profound developmental delays,” said Dr. Kevin Gurcharran, a pediatric neurologist at Mount Sinai Health System in New York City. “Only a minority ever walk or speak.” Gurcharran has not been involved with Emmy’s care, but has treated between five and 10 children with Aicardi syndrome.
There is no cure for the condition, and mortality is high. About 25% of children with Aicardi syndrome die by age 6, Gurcharran said. That rises to about 60% from ages 6 to 14.
Emmy’s Journey
Emmy seemed healthy at birth, hitting her developmental milestones until she had a seizure at 2 months old.
“She was shaking, and her tongue was doing this weird, like, up and down movement,” Lazoen said. “Her eyes were rolling.”
After months of additional seizures and hospital stays, Emmy received her diagnosis.
Treatment for Aicardi syndrome is focused on managing symptoms with seizure medications, as well as physical and occupational therapy. Equipment like specialized wheelchairs can cost thousands of dollars.
Quality of Life and Financial Burden
That’s a necessary cost, Gurcharran said. “Even small improvements — helping a child communicate or sit upright — can dramatically improve quality of life,” he said.
The costs to keep Emmy going can reach up to $3,000 a month, said Emmy’s father, Patrick.
She requires daily medications to control her seizures. For food, she relies on a special type of formula.
Patrick has United Healthcare coverage through his job as a firefighter, and Carrie had BCBS until she left her job in September to take care of her family full time. When there are two insurance providers in a household, the primary insurance for the child is decided based on the “birthday rule” — defaulting to whichever parent’s birthday comes first in the year. In this case, it’s Patrick.
The secondary insurance is usually only used after the primary insurer denies a claim.
Conclusion
The Lazoens’ story highlights the challenges faced by families with children who have rare and debilitating conditions. The constant battle with insurance companies for coverage of necessary treatments and equipment can be overwhelming and frustrating. It is essential for families to be aware of their rights and to seek help when needed. By sharing their story, the Lazoens hope to raise awareness about the importance of adequate healthcare coverage for children with disabilities.
FAQs
- What is Aicardi syndrome?
Aicardi syndrome is a rare genetic condition that affects the brain, causing seizures, vision problems, and significant developmental delays. - How common is Aicardi syndrome?
Aicardi syndrome is diagnosed in a few thousand people worldwide, almost always occurring in girls. - What are the symptoms of Aicardi syndrome?
Children with Aicardi syndrome can have dozens of seizures a day, face profound developmental delays, and are born with severe brain malformations and eye abnormalities. - Is there a cure for Aicardi syndrome?
There is no cure for Aicardi syndrome, and mortality is high, with about 25% of children dying by age 6 and about 60% from ages 6 to 14. - What kind of support do families with children with Aicardi syndrome need?
Families need access to adequate healthcare coverage, including coverage for necessary treatments, equipment, and therapy, as well as emotional support and resources to navigate the complex healthcare system.
