Erin Gard and her mother, Joanne Guthrie-Gard, already spent many years of their lives searching for an effective epilepsy medication for Erin. However, once they found it, they lost access in only a few months, reported Chicago Tribune. The family’s insurance company covered the new drug for about 4 months until they said Erin had to go back to her previous drug or pay out-of-pocket for the new medication. Her previous drug caused her intense side effects and the cost for the new drug was $10,000 every three months out-of-pocket.
Epilepsy is a neurological disorder that causes consistent and intense seizures. It affects about 3 million people in the United States. Erin is 26-years-old and prior to finding the right medication she would have about 20 seizures every week. Once she found a helpful medication, her seizures were limited but she was experiencing dizziness and slurred speech. The substitute medication that she had started using was exactly what she needed.
It was devastating for the family to hear that their insurance company would no longer cover the expenses of the drug that was working so well for her. The abrupt change came in the middle of her plan and Illinois lawmakers are now reviewing a bill that would help people like Erin. It would limit insurance companies from making midyear changes to drug coverage. This would have a big impact for patients struggling with epilepsy, as well as many different types of conditions in the rare community.
The President and CEO of Pharmaceutical Care Management Association, Mark Merritt, does not think this bill is in the best interest of everyone. He believes this would cause problems with expensive drugs being picked over drugs that are more affordable but equally as effective. The bill continues to be debated.