THE EPILEPSY MEDICATION FUND

 

The Epilepsy Information Service (EIS), a nationwide toll-free information line opened in 1979.  One of the goals of this line is to look at the needs and concerns of those with epilepsy. For years the number one need for many callers is the need for assistance in getting their medication.  Epilepsy medications are expensive, often costing more than $1,000 a month. For those not covered by insurance or other programs, these costs are prohibitive. Most affected are the working poor.

Ms. Patricia Gibson, Director of EIS, brought this pressing concern to the attention of the NC legislature and a bill was passed in 1989 that set up the Epilepsy Medication Fund. Since that time $75,000 has been allotted each year for epilepsy medication assistance. From the beginning the funds have not been enough and this year all funding for this program has been eliminated effective May 30, 2009. Ms. Gibson also established a national Epilepsy Medication Fund specifically for babies with infantile spasms, a devastating seizure type that can lead to significant delay if the seizures are not treated early. Various fundraisers are held throughout the year to support this Fund.

There are no words that properly convey the importance of this Fund. It saves lives, prevents hospitalizations, injuries, and emotional turmoil. Suppose for a moment that you have a baby with seizures. You lost your job when your company shut down. You and your wife quickly take part-time jobs (with no benefits) while you look for other work. Your baby’s seizures are getting worse. You watch helplessly as she stiffens, stops breathing, begins shaking, and turns blue. You rush her to the ER for the second time because the seizure is lasting too long. A new medicine is prescribed as well as Diastat, a suppository to stop prolonged seizures. The suppository is $200, the new medicine $800 a month. The ER visit is over $1,000. You have no idea what you are going to do. You look in the phone book and see a listing for the Epilepsy Information Service. You call and ask about the seizures, “Is my child going to die?” The operator listens, calmly answers a lot of questions and asks more about your situation. When you mention that you don’t know how you are going to get the new medicine, the operator says “We can help, which drug store would you like to use?” You are dumbfounded, you weren’t calling to ask for financial assistance. You are speechless, your voice becomes choked, and you don’t know what to say. As you struggle to keep your emotions in check the voice on the other end, gently says again, “Its ok…we can help.”  This is a true story, one of many stories heard on the Epilepsy Information Service. Help is there because of a wonderful, dedicated group of people—chili cooks, professionals, business people, parents of kids with severe seizures who still find time to volunteer their services. One young woman with uncontrolled seizures is our top salesperson of the Chili tickets. They all come together year after year to make sure that no one with epilepsy goes without medicine due to lack of funds.