Family pays $125,000 for man’s life-changing treatment that insurance wouldn’t cover

Posted at 12:14 PM, Jan 08, 2015
and last updated 2015-01-08 13:02:46-05

GRAND RAPIDS, Mich.-- Cory Smallegan, a promising singer, was auditioning and made it through the first round of American Idol when he suddenly began to lose feeling in his legs.

After months of testing, in January of 2011, Smallegan was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP).

"My office used to be upstairs. I couldn't walk upstairs anymore," he said. "Luckily, I was able to move my office downstairs because my legs just couldn't lift up. Normal people can stand on their toes, I couldn't do that...I would fall, I would run into things."

CIPD is a rare neurological disorder that can take away a person's ability to move.  Aside from the heaviness in his legs, Smallegan began noticing other things diminish, like his vocal cords. With his symptoms growing increasingly worse, he began to wonder if his once active life would soon be limited to a wheelchair.

"I was on my way...I was falling down a lot," he said.

Even his father, Dennis Smallegan, began making arrangements for his son to carry out a life-long debilitating disease.

We thought he could actually pull in the back (of work) in a van with a wheelchair van and get him out," Dennis Smallegan said. "I was trying to convince him you can still live a pretty decent life in a wheelchair. It's pretty frustrating to tell a 22-year-old that."

Doctors began treating Smallegan with steroids and IVIg treatments. However, while it kept his condition from worsening it didn't offer a cure.

"It was an ongoing process," Smallegan said. "Blue Cross was prepared to pay for it forever. I wasn't set to get off of this at any point."

Desperate and frustrated, Smallegan began doing his own research. He started finding other patients who've claimed to have dramatic results after undergoing stem cell transplants. Many of them had the procedure done at Northwestern University.  So, he decided to make the trip to Illinois to confirm his diagnoses and learn if he would be a good candidate for the transplant. The procedure uses a patients own stem cells for the transplant.

"No only did I have it, but, I was young enough that I would probably get a full remission if I got it done," he said.

Nearly four years after receiving the transplant, Smallegan is in remission and back to living the life he had prior to his diagnoses.

"I feel like I'm 100 percent," Smallegan said. "I have everything I had before--I don’t feel any residual effects of the disease at all."

The only problem is, his insurance didn't cover the transplant because it's considered a clinical trial. In the end it cost Smallegan and his family more than $125,000.  A majority of that coming from his father's retirement fund.

"This is a one time chance--You'll do anything," Dennis Smallegan said. "That's when people start getting desperate and they'll try anything to get it done."

On Tuesday, FOX 17 Problem Solvers told the story of Lori Mills. She has the same disorder and same insurance as Smallegan. Both of them filed appeals to try and get Blue Cross Blue Shield to cover the procedure.

While Smallegan's appeal eventually went to the state, which ultimately made the decision that he could no longer appeal, Mills' case had yet to get that far. After airing her story, BCBS wrote her a letter that brought an incredible amount of relief. The insurance carrier has decided to cover the stem cell transplant.

However, the letter came with a disclaimer that this decision would not be precedent setting. Meaning, it wouldn't be offered to all patients with the disease.

"I had a hard time sleeping last night...I was angry," Smallegan said.

Aside from his procedure being denied, Smallegan said he can't understand why an insurance carrier would pay for life-long treatment and not a one-time procedure.

"It makes up the money," Smallegan said. "Blue Cross has now saved $1.2 million alone not paying for my treatments."

His father even crunched the numbers from when his son came off the treatments in the 6 months prior to the stem cell transplant. Every time his son had the treatments and steroids, which was about once a month, it cost nearly $40,000.

"That's $240,000...that alone would pay for the whole procedure," Dennis Smallegan said. "It's a win-win for Blue Cross."

The Smallegans are also having a hard time understanding why they couldn't get the coverage when they needed it like Mills is getting.

"I'm in debt to all of these people, but I have to get better otherwise I'm just going to be in a wheelchair," Smallegan said. "Other people are still struggling to get coverage and it just makes no sense. You can't pick one person and cover them and not cover someone else, especially when their circumstances are identical.

FOX 17 spoke with a nurse at Northwester University. She said there's a lot of patients who are being denied the coverage. The facility is saying the treatments do work and insurance companies shouldn't be classifying them as "trials."

A call was also placed to BCBS, but was not returned by Thursday morning.

FOX 17 Problem Solvers will be meeting with Smallegan's doctor and learning more about why patients and their doctors are at odds with insurance companies over what could be life-changing treatments.