An Ottawa woman is speaking out about her struggle to get the medication she desperately needs for a dangerous condition and trying to educate others about it.
Becky Bodnar has narcolepsy with cataplexy. She collapses whenever she experiences any type of strong emotion.
“Laughter is a big one, surprise, somebody scares me, anything like that, even opening Christmas presents or fireworks can have me completely paralyzed,” Bodnar said.
The medication she needs, called Xyrem, is not covered by any drug plan because it can be used as a date rape drug.
“It's $2,000 a bottle. A bottle lasts 20 days for me so when you work it out it's $100 a night for me to take medication that makes me normal,” Bodnar said.
Because she can’t work, she can’t afford to buy more and her supply has run out.
The pharmaceutical company that makes Xyrem has agreed to give her a one year supply for compassionate reasons but her friends have started a fundraising page for when that supply runs out.
Bodnar says she hopes to lead an independent life again.
“This is not only an extremely necessary drug to keep me safe it will become more important for people in the future because there are more and more cases being discovered.”
