Denied again, Medicare appeal granted quickly after WBTV Investigation

NEWLAND, N.C. (WBTV) - Shane Bare was quickly granted a victory in his appeal for coverage of a life-saving drug to treat his CIDP after WBTV reported on his situation.

It’s a far cry from his last battle against his plan sponsor and the Centers for Medicare and Medicaid Services when he had to appeal denials five times before finally winning approval from a judge. But after that victory, Medicare made a switch which put him back on the hook for thousands of dollars every month.

WBTV first spoke with Bare earlier this month when there were zero certainties about how he would continue receiving treatment for his CIDP.

Bare has CIDP (Chronic inflammatory demyelinating polyradiculoneuropathy), a rare auto-immune disorder that shuts down nerve endings, causes muscle weakness and can eventually lead to paralysis.

“I wouldn’t be able to do anything, I wouldn’t even be able to roll around in a wheelchair,” Bare said.

Bare has Medicare, which covered Hizentra when a nurse was administering it to him in the comfort of his own home. But the insurance rules meant it wasn’t covered when the nurse left and he could start administering the drug himself at home.

After five appeals, a judge finally ruled in Bare’s favor saying that his sponsor would have to cover Hizentra on Part D. He was paying almost nothing for the drug after a hardship waiver from the drug manufacturer.

But just a few months later, he received a letter saying that Hizentra coverage would switch from Medicare Part D to Part B.

The switch would cost Bare nearly $10,000 a month. That’s because Bare is already disabled, paralyzed from the waist down during a car wreck, and can’t get supplemental insurance that would cover most of the costs.

After the switch, Bare had to start searching for a new medication and settled on Xembify. Like Hizentra, it’s subcutaneous which means Bare can use a pump to administer the drug himself in the comfort of his own home. He says relying on medication that uses an IV creates unneeded risks.

“When you’re paralyzed, you have a lot of risk for blood clots anyway,” Bare said.

“But the medicine also carries a risk for blood clots, even with people that aren’t paralyzed. So there’s these extra precautions for someone like me to even get on that medication.”

But again, records show his plan sponsor was denying the coverage for Xembify claiming treatment for CIDP in the home was only covered under Part B.

“After sending two or three denials my way all of a sudden it’s approved now,” Bare told WBTV.

Records Bare received show that an expedited appeal was submitted on his behalf. He was granted approval on only the second appeal level, compared to the fifth level the last time he went through this process.

“I don’t think it would have gotten nearly as much attention without you guys,” Bare said to a WBTV reporter.

But what happened last time, with Medicare switching the rules weeks after he won his first appeal, still sticks in his mind.

“From what I’ve gathered, talking to the other pharmacy, that’s not going to happen. But again, you never know,” Bare said.

Even though Bare already received his new medication and will start treatment in May, he’s not done yet.

“We need to make sure this doesn’t happen to anybody else in the same situation,” Bare said.

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