Editor’s note: Floridians are paying a lot of money for health insurance, but we’ve been listening to our viewers. Many of you are very unhappy with your coverage. At ABC Action News, we want to take action for you. Has your doctor prescribed treatment that your insurance company denied? We are digging into the problem of outrageous denials. Our special coverage is called “Patient No More!” We are investigating why claims are denied and provide useful information that gives you the best chance of getting your medical claim approved.
I-Team investigator Adam Walser is now hearing from a woman with a rare blood disorder, who contacted us to tell us about her challenges.
“Somebody has to speak out. And it may be some simple, regular person like me,” said Linda Brown.
Linda says her insurance company refused to pay for medically necessary blood transfusions and is now sharing how she ultimately got her repeated denials overturned.
“You’re the best,” Linda tells her three-year-old dog Sam, as she takes him for his nightly stroll through her apartment complex.
At first glance, she looks like most dog moms, but Linda has a disease that affects only one in every 250,000 Americans.
“It’s a genetic blood disorder... alpha thalassemia,” she said.
The condition affects her hemoglobin and can cause low oxygen levels in her blood.
Linda works full-time in a law office and regularly attends concerts with her daughter Connor.
But over the years, Linda has needed blood transfusions.
“I had periods of transfusion dependency, meaning a couple of transfusions a month or every month,” Linda said.
She said these transfusions are very expensive.
“They're several thousand dollars and every time I had one, I had to be admitted to the hospital. They keep me overnight to monitor for reactions to the blood,” she said.
“They said they would pay for one transfusion a year”
When her transfusions became more frequent, Linda says her insurance company denied her claims.
“They’d tell me, we’re not gonna pay this claim. It was ridiculous. Cyclical and ridiculous. Just kept going round and round every time,” Linda said. “They said they would pay for one transfusion a year. And at that point when I was getting several a month.”
She compares it to telling a cancer patient they can only get one round of chemotherapy.
Linda says her regular doctors eventually stopped treating her at their office because they weren’t getting paid.
“The hematologists eventually told me don’t come to us for a referral. Just go to the ER so they can transfuse you,” she said. “Because the insurance company refused to pay, there was a time I was at almost $300,000 in medical debt.”
During that entire time, Linda says she faithfully paid hundreds of dollars each month to cover herself and her teenage daughter with medical insurance.
She said if she didn’t get a transfusion when she needed one, her life would be at risk.
“I would go into organ failure. Multiple organ failure. There were times I went to the hospital, like the time my heart stopped,” she said.
Linda said her heart stopped for eight minutes, but doctors and nurses were able to revive her.
“I felt like I’d be better off dead”
Linda admits she didn’t go to the Emergency Room sooner that day because she didn’t want to grow her debt.
The situation took a huge emotional toll.
“There were times I felt like I'd be better off dead instead of trying to fight trying to keep going, trying to survive,” she said.
Dr. Bill Hennessey is a physician who runs CareGuide Advocates, a company that helps patients reduce healthcare costs and fight denials.
He says patients have another option, even after claims and appeals are denied.
“There's also peer-to-peer reviews that can occur,” Hennessey said.
Peer-to-peer reviews
This type of review involves a specialist treating the patient directly contacting a specialist hired by the insurance company, providing extensive medical evidence as to why a treatment is effective and necessary.
Hennessey says peer-to-peer reviews are rare because most patients don’t know they’re an option and sometimes doctors don’t like to do them.
“We don’t get paid to do those peer-to-peer. So it eats at our time, while we have to pay all of our staff and overhead,” he said.
But peer-to-peer reviews often work.
Linda says her denials came from rank-and-file claims examiners.
“They have people reviewing these claims who don’t know those things. Who may not have a medical background,” she said.
When she begged her doctors to get involved, things finally changed.
“A group of hematologists and a cardiologist were writing letters on my behalf to the insurance company imploring them to pay these bills, saying these are medically necessary,” Linda said. “Eventually they just settled with the hospital.”
Linda said she does not know if she would still be alive if her doctors hadn’t fought for her.
Linda now has a different job, a new health insurance company and is undergoing new treatments that have kept her out of the hospital recently.
She’s taking lots of walks with Ted.
We met Linda after she responded to a social media post, in which we asked people to contact us about denied claims.
“It just takes one voice to be heard,” she said. “We have to start the change. It has to start with people who know, who've experienced it and been through it.”
Healthcare.gov has information about external or peer-to-peer reviews.
Click here to find out more about your rights as a patient.
"MAKE IT MAKE SENSE"
Investigative Reporter Katie LaGrone shares the personal stories of five Florida women all diagnosed with breast cancer and all denied coverage for care by their insurance companies.