Patient Profile: Don Ball

Impact stories

Don Ball was in his mid twenties when he experienced his first seizure. He was at work and woke up from a violent tonic clonic seizure with several broken teeth. Unfortunately, it wasn’t a one-time event and over the next few years, it took trying many different anti-seizure medications and combinations of prescriptions before his seizures began to reduce to “what some may call a ‘manageable’ level,” he explains.

Don has not gained complete control of his seizures and relies heavily on his medication. Not only did it take a lot to find the right medication and dosage, he recently suffered another blow when access was threatened by his insurance company. From 2015 to 2016 the cost of his copayment for an anti-epileptic drug increased from $50 per month to $800 – which is nearly equal to his monthly mortgage payment. This drug, Vimpat, was taken off his insurance company’s preferred drug list, something he wasn’t even aware existed, without any warning to Don.

Don pays his premiums each month. He expects to have access to the medications that allow him to live a healthy life. Isn’t that what insurance is for?

“This is frightening and wrong that a company, and not your doctor, can have so much control over your health just because of money,” Don says.

Don is ineligible for financial assistance because he has insurance through his employer. When he tried to switch providers, he kept being denied because of his epilepsy diagnosis.

Currently, there are no generic versions of Vimpat, and Don must pay the drug’s high price because he “can’t live without it.” This means changing the way he manages his money and cutting back on other bills and payments – changes that are hard, but notes he couldn’t imagine what he would do if he had a family and children to support in this situation.

In 2014, Don also had an RNS implant, and while adjustments are still being made, there is a definite improvement and he is hoping one day to be seizure free. Looking back now, he sees the extra significance of this surgery. Not only will his seizures (as well as his medications’ side effects) potentially end, but he will no longer have the burden of their costs.

“I am just one person – imagine how many other people go through the same or worse. And it’s not just a problem for people with epilepsy. This is also happening to other people taking medications for other reasons. This is why the more who know about it, the better.”

Financial barriers should not dictate treatment options and quality of life.

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