(CBSDFW.COM) – Almost ten years after being diagnosed with benign essential blepharospasm, Tom Miller is used to dealing with the unexpected. The condition causes the muscles in his head and neck to contract, forcing his eyes shut without warning. Miller says it would happen at the worst times, like while driving. “I rear-ended a semi once,” he said. “And I hit a concrete barrier on 35.”
The disease can also make it hard for him to speak and swallow. “He can get choked and it scares me,” said wife Rhonda.
After months of medical trial and error, doctors found that regular injections of Xeomin eased the symptoms. Xeomin is a form of botulism toxin that is used to block muscle movement in areas that contribute to wrinkles.
Their insurance company covered two vials every two months. Then Rhonda was laid-off from her longtime job last year. They lost their coverage, then Tom’s new job came along. “What we thought was such a blessing is almost turning out to be a curse,” said Rhonda.
Aetna refused to cover the injections, saying the dosage wasn’t FDA-approved. “Just like Dr. Merritt told Aetna in his letter,” said Rhonda. “For some patients that have diabetes, dependent on the severity of your diabetes, you may need more insulin.”
They appealed and lost twice. Three months went by without treatment. “We couldn’t wait any longer, it was getting too bad,” said Rhonda. “So we paid out of our pocket for Tom to get his injections.” The vials cost $700 each. Tom’s doctor only charged them for one. “He understands the situation, so that’s compassion.”
The Millers knew they couldn’t afford to keep paying out of pocket, so they called Cristin Severance for Consumer Justice. Hours after we reached out to Aetna, the company agreed to cover Tom’s injections and sent us the following statement:
“Our responsibility is to put our members’ safety first and that is why all of our decisions are founded on clinical studies and scientific data. Our prior determination was based on the maximum studied and recommended dosing in the FDA approval. After careful review of Mr. Miller’s records, an exception is being made based on the unique clinical circumstances of this case and we are approving the requested dosage of Xeomin, effective immediately.”