NEWTON FALLS, Ohio — At only 13, she has sometimes felt worthless.
After all, Ella Marquette's health insurance company recently denied her private duty nursing services that help keep her alive.
"Without the nurse at night... I could die," Marquette said.
Without warning
She was born with Crouzon syndrome, a rare genetic condition that causes abnormal development of skull and facial bones.
Since she was 6 months old, her health insurance had covered nursing services to help keep her safe.
But, without warning, Anthem Blue Cross Blue Shield stopped coverage last September.
Constant care
To breathe, Marquette needs a tracheostomy tube that allows her to inhale and exhale through an opening in her neck.
To prevent her from choking, mucus must be continually removed from the tube using a special machine.
"What that looks like is you're suctioning her anywhere from every 15 minutes to every hour," Traci Fraelich, Ella's mom, said.
Fraelich is a single mom and registered nurse. She cares for Ella all day, every day.
Since Marquette was a baby, a nurse comes from 11 p.m. to 7 a.m. so Fraelich can sleep.
"Then I assume care for the next 16 hours until I get relief again," she said.
But then, on a November afternoon last fall, the nursing agency called Fraelich.
She said they told her daughter would no longer receive their nursing services starting that night.
"I had no preparation for this," Fraelich said. "I get a phone call one day... and that's it."
Why now?
What happened?
Marquette's health insurance provider, Anthem Blue Cross Blue Shield, had determined private duty nursing services were "not medically necessary," according to a letter sent to Fraelich.
“Why now?” she asked. "Her diagnosis is the same. The trach tube is still present. She still requires 24/7 care."
"I was a little stunned [by Anthem's denial]," Marquette said.
Even with constant suctioning, her tracheostomy tube can still become blocked with mucus, which means it must be replaced immediately.
"It's a medical emergency if she plugs her trach," Fraelich said. "Somebody has to do it, and it cannot be her."
News 5 asked Marquette if she could take care of the tracheostomy tube alone.
"I don't believe so," she said. "It's too much responsibility and pressure."
'Money - not healthcare - driven'
"It is really unreasonable to think that, at her age, she would be able to do that on her own," said Dr. Sarah Adams, Marquette's long-term pediatrician.
She was so outraged by Anthem's denial that she reached out to News 5 Investigators for help with Marquette's case.
"This is really the first time I've ever seen a situation like this," she said.
Adams quickly appealed the denial on Marquette's behalf.
Anthem denied her claim, too.
Then, Fraelich filed her own appeal.
Anthem also denied that one.
"In my opinion, they [Anthem] are money—and not healthcare—driven," Fraelich said.
'Simply don't care'
Anthem wrote in a Jan. 9 letter, "Information... does not show [Ella's] condition is unstable."
Without overnight nursing services, Fraelich said her daughter's condition could deteriorate. She could end up in the hospital or a skilled nursing facility.
"There is no parent out there that can stay awake 24/7 and take care of their child who has a trach tube," Fraelich said.
Marquette agrees. "They simply don't care what happens to me... or my mom," she said.
Anthem's response
After I reached out to Anthem about Marquette's case, things changed again.
Just before our reporting deadline, an Anthem spokesperson said they "approved nursing care for Ella."
Below is Anthem's full statement:
“Anthem Blue Cross and Blue Shield is committed to providing members with access to safe, effective, and clinically appropriate medical care. Our medical coverage decisions are guided by a rigorous, transparent, and evidence-based process focused solely on clinical merit and member benefits. In this instance, essential clinical information about Ella was submitted incorrectly by her provider. As soon as that documentation was available, we approved private duty nursing care for Ella. We have reached out to both Ella’s family and her provider to share this update. At every step of this process, the best evidence-based medical decisions were made based on all the information available.”
Adams said she submitted all the documentation requested about Marquette's case and had a peer-to-peer review with a doctor employed by Anthem.
News 5 followed up with Anthem after the company blamed Adams for its denial.
Below is their response:
"During our conversation with Ella’s doctor, we discovered differences between her medical history and the records we had. We requested updated clinical notes and care logs, but the provider submitted the information incorrectly, which resulted in it not being attached to the prior authorization request for this service. Once we identified the issue, we reviewed the case with the updated information and quickly approved private duty nursing care for Ella."
After getting the approval, Marquette and her mom still wanted us to share their story.
They said Anthem should be held accountable for what they went through for over two months.
"I don't want another family to get in this situation," Marquette said. "I [also] want Anthem to know this isn't a joke, this is someone's life they're playing with."
