Medication Switching…in other words, you take your prescription to the pharmacy and the pharmacist fills it with a generic anti-epileptic medication instead of the name brand, has become such a crucial issue for the Epilepsy Community. And, I believe it will continue to attract more attention. I was trying to explain the issue last evening to a friend who admits…she knows little about my disease. To her, it seemed elementary–you have an order for a certain medication from your doctor…you should receive THAT medication, the actual medication, whether it’s Dilantin, Topamax or Tegretol. I wish it was that easy.

These days, generic drug makers are manufacturing so many variations of our anti-seizure meds, it’s become an absolute free-for-all. Dr. Brien Smith of Henry Ford Hospital told me yesterday…there are now 18 different generics for Zonegran. Many times if you take the generic of an anti-seizure medication, you could end up with breakthrough seizures, a severe allergic reaction…and in rare cases, death.

Photo courtesy of flickr.com

Both Dr. Smith and I spoke yesterday morning in Lansing, Michigan…the state’s capital…at a legislative breakfast held by the Epilepsy Foundation of Michigan. This is the story I told:

Good morning. My name is Alysse Mengason. I thought I’d start today by telling you a story since my 4 year old daughter loves stories, morning or night, I have great experience telling them!

A woman had been taking a drug called Zonegran for her Epilepsy, prescribed by her neurologist. She had seizures at least 10 to 15 times each week, so she no longer drove a car. She had fantastic support from her husband and a few close friends, and one day…her dear friend stopped at the pharmacy on the way to visit her, to pick up her prescription.

The pharmacy employee, not the pharmacist, handed the medication to her friend and asked for 5 dollars. Confused, because she had picked up medications for her friend before and they were more expensive…but convinced, the friend handed over a 5 dollar bill and took the drug…Zonisamide…home to her friend. When she got there, her friend with Epilepsy took her medication for the evening. And…she did the same the next morning—and the next evening. That night, very late, this woman was struck with 2 grand mal seizures, both lasting around twenty minutes each. One was so severe, she fell out of bed and hit her head on her bedside table, causing a skull fracture and concussion. To add to all of this, she began to experience an allergic reaction, throat swelling, a raw and painful rash spread across her body and her heart slowed.

I know this story quite well, because that woman was me. And, this happened because my Zonegran was switched by a pharmacist to a generic…without my permission, or the permission of my neurologist. Why didn’t I notice, you might ask? I’m highly educated…I’ve spent nearly 20 years in the communication field—so why didn’t I look at my pill bottle to see what I was taking? The pills look incredibly alike…that’s what the generic drug-makers do. So, when I shook two into my hand, I thought I was taking my anti-epileptic drug.

I recovered, in time, but it cost me 4 days in a hospital and a great deal of pain. And all of this because my insurance company wouldn’t pay for the name-brand drug, and a pharmacist was doing what he was told…without telling me.

I have spent more than 75 % of my time with Epilepsy paying for name-brand drugs when my insurance company would only approve the generic. Instead of getting those 4 or 5 dollar prescriptions, I have paid in upwards of 400 dollars for a 30 day supply of just one drug. Many people take 2 and 3 different anti-seizure drugs each day.

The interesting thing about Epilepsy, we are all not cookie-cutter in terms of our Seizures. Some of us with Epilepsy can take the generics (I for one would LOVE the day I can get those $4 bottles at Target!!), and some of us are fortunate enough that our insurance covers name-brands at a reasonable cost. The new drug I take…Vimpat…doesn’t come in generic yet since the patent hasn’t expired, so I’m safe for now. We pay 90 dollars a month for this medication.

There are some of us who simply cannot take generics due to allergic reactions and the risk of increased seizures. Epilepsy is so unique. It’s a little like jumping into a pool when you’re not really sure if you know how to swim. Many of us are treading water in terms of–will the side effects of a certain medication drown us, or will we be able to float with adequate seizure control. And then there are those who don’t even have coverage if they must take a name brand, so they end up rationing out the meds they do have and not taking the amount prescribed, and experiencing an increase in seizures. Simply stated, this is serious stuff, but it’s something we must ALL pay attention to.

Pharmacists should be prohibited from switching anti-epilepsy drugs without prior notification and the signed informed consent by the prescribing physician and the patient. According to a recent study of 15,000 epilepsy patients, previously stable patients who required emergent evaluation for seizures had an 81 percent higher chance of having been switched to a generic anti-epilepsy drug.

It was more than just a bad reaction for me in 2006, I nearly lost my life by taking those generic drugs. Please…do what you can so that what happened to me won’t happen to anyone else.

Thank you.

I will continue to talk about this issue…it’s an absolute passion for me, perhaps because I can’t take generics!

There are many resources out there for you to learn more about this issue. Here are just a few:

http://www.epilepsyfoundation.org/medicationswitching/

http://www.epilepsymichigan.org/template.php?pid=111