"Help Me Stay Awake!"

Blue Cross / Blue Shield Refuses to Pay for Narcolepsy Medication

24-year-old Ramie Hyde is lucky to be alive after a very serious accident.
She fell asleep at the wheel.

"Thank the Lord, I didn't involve anyone else or anyone's property," said Ramie, "but I rolled my car three times because I fell asleep at the wheel."

Ramie Hyde is a young woman working hard to get herself launched. But she's come up against a medical condition that's brought everything to a halt.

The medical condition is Narcolepsy. She can fall asleep at any moment..or worse..she can't even get out of bed in the morning. Without medication, it's destroying her life..and she can't get the meds.

There is one medication that does work for her, but her new insurance company won't pay for it, creating a Catch-22 for her. Raime can't work if she's not on medication and if she isn't working she can't possibly afford the more than $2,000 a month medication costs.

Ramie keeps reliving the car accident in her mind. She thought she did everything possible to prevent it.

"I had the music on to keep me awake. I had caffeinated beverages and I had a good night's sleep the night before. I don't have any control of when I stay awake or when I fall asleep."

Ramie's doctor, Dr. Robert Chalemian, says it doesn’t matter what someone with narcolepsy does.

"It's a sleep disorder that one of the primary symptoms is the inability to stay awake.
The individual perceives that the need to fall asleep is so powerful that the person simply falls asleep, whether it's behind the wheel, at a party or sitting at home. It's not associated with fatigue. The person may experience that he or she is quite awake and the need to fall asleep suddenly comes over them."

So just how did Raime get through school? "I spent five years in undergraduate school and I slept through almost every class. It's a miracle I didn't fail all my courses."

And what about the future?

"My goal is to be functional enough to go to work and go to school. I want to function.
I like being part of society," said Ramie.

Dr. Chalemian says medication can do that for her and her previous insurance carrier used to cover it.

Raime says "My doctor prescribed Provigil. And Blue Cross / Blue Shield of Wisconsin paid for the Provigil simply with the diagnosis," said Ramie.

Raime says Provigil worked wonders. She could drive. She did well in school and at work, even getting up in the morning wasn't a struggle. Her mother can speak to that.

"When she's not on the Provigil," said Ramie's Mom, Linda, "it's like waking someone from a coma or absolutely drunk from the night before. Her eyes are absolutely glazed. I pat her, sometimes I get a little mad at her because that will make her feel guilty, but then sometimes she cries. It's been an absolute misery."

But when Blue Cross / Blue Shield out of Florida became her insurance provider, they required Ramie do a sleep study to confirm the diagnosis.'

"The goal," said BCBS' pharmacist Dr. Eric Cully, "is to ensure a safe and effective use of medication. Narcolepsy is a very difficult diagnosis. There are a lot of variables and differences of opinion."

Doctors working for Blue Cross / Blue Shield in Florida concluded the sleep study didn't prove that Raime has narcolepsy and refused to cover Provigil. That decision pains her Dad.

"Absolutely," said Ramie's Dad, Neil. "There are a whole series of things as you go forward and she's already dropped out of college. That's pretty sad."

Without access to Provigil, Raime's future is uncertain.

According to the Hydes and Raime's doctor, it's the only medicine that has been effective and if she doesn't get it, her life, in the best sense, is on hold."

When the Hydes contacted Help Me Howard, Howard reached out to Blue Cross / Blue Shield Florida.

Though our calls couldn't get them to budge on their decision, they did admit in conversations, that some cases warrant exceptions, but apparently not Ramie's.

The Hydes and their doctor have recently filed their fourth and final appeal with BCBSW of Florida. We'll keep you posted on the outcome.

Produced by Noreen Lark