MILFORD, Conn. (WTNH) — Patients speak out about the high cost of prescription drugs during Epilepsy Awareness Month.
“There are a lot of people out there who don’t understand what epilepsy is,” says Amber Cushman, speaking out during Epilepsy Awareness Month, sharing her shock after a grand mal seizure and her subsequent diagnosis in 2012. “It was horrible, it came out of nowhere, and then all of a sudden, you lose your driver’s license. You’re constantly at the doctor because they’re trying to figure out what’s wrong with you.”
Brain surgery – two years ago – didn’t stop the seizures, but it also didn’t negatively impact her speech or memory.
“I ended-up lucky in that regard,” she says.
But paying for her medications is an up-hill battle. Much of the cost is out-of-pocket and incredibly expensive.
“I was off one of my medications for a while because it went up to $4,000, and I started having grand mals,” explains Cushman. That’s $4,000 a month. So, she called the Connecticut Epilepsy Advocate for help.
“We look for resources for people getting their medication, finding a good doctor, transportation,” explained Bob Fiore, who has been lending a hand for 12 years.
He says patients aren’t aware of available options, which are so important, especially during the COVID-19 pandemic.
“I contact the drug manufacturers and find out what plans they have to offer,” he explains. “The majority do, and we take advantage of that.”
“He helped me a lot,” says Cushman, who had to leave her job as a paralegal and criminal clerk. She has several small seizures each month. But she’ll continue to raise awareness to make a difference for herself and others.
“I still make life go on. There are days when it affects me,” she says. “You have to live your life.”
Fiore is working to get lawmakers involved. He has an upcoming Zoom meeting with senators to address the high cost of medication.
Click here to learn more about Connecticut Epilepsy Advocate.