I got another major shock last week when I learned my epilepsy medication will cost me $800 dollars a month starting December first. I’ve been working on this full time since. I called the drug company this morning to see where things stand and they told me they never received part of the patient assistance program application. This is despite an email they sent me last Thursday confirming they received everything. All I could do was re-submit it all. When I asked if this will delay things since I need the medication by Sunday, I got no answer. It’s a holiday week and I’m trying to be thankful instead of angry but it’s hard. I’m thankful that I have the ability to track all of this, start a new file, take detailed notes, make phone calls… but what about the countless people with epilepsy who can’t? What about the fact that my invisible disability is often triggered by stress? I thought of the adults performing on stage at the CURE fundraiser I recently attended, developmentally disabled but in wonderful, caring hands at Misericordia. Sadly, there are too many adults and children who don’t have anyone looking after them. I need to turn my anger into action.
I had the privilege of attending the CURE epilepsy fundraiser at Navy Pier in Chicago last Monday night. I joined friends from Elmhurst, one of whom has a daughter with epilepsy. I was so grateful she was able to get me a seat at her table. The event was a blast and it was an honor to watch CURE raise two million dollars for the cause. I met Meg Busing, a mom with epilepsy, who traveled to the event from Nebraska. She’s been seizure free for seven years since surgery. Over the course of two hours, I listened to parents speak who lost children because of epilepsy. I also learned how much is being done with research. It’s inspiring to learn how people like Meg and her husband run a camp for children with epilepsy called Camp YouCan. https://www.midwestyoucan.org/camp-youcan
This incredibly moving, motivating event reminded me of my purpose. My plan last week was to follow up with these lovely ladies, write thank you notes and stay in touch. Instead I’ve been in panic mode over meds. My goal was to have December first prescriptions filled before Thanksgiving after registering for a new plan through Medicare. I’m a problem solver when it comes to insurance so when I was told $800 dollars a month despite being told otherwise when I picked the plan, I started working.
When the insurance company couldn’t help, I was told my best bet would be to apply for free medication through the drug company. The application itself was easy enough but the letter to the pharmaceutical company describing my story took a while. No matter how often I tell the story, it’s painful. By the way, I did ask the insurance company rep how any medication could cost $800 dollars a month. I was told it’s because the medication is “Tier 5” and they could make no cost exception. This made me feel like I ordered something expensive from a menu or shopped at a fancy department store. Like it makes me feels good or tastes good or has me back to work? Nope, I still have seizures.
The people on the phone have been nice, just doing their jobs. However, they either have no clue about epilepsy or clearly don’t know or live with someone who has seizures. Look, I don’t expect them to know as much as a neurologist or even my 12 and 14-year-old kids. But I was surprised when a pharmacist at the insurance company asked me if this medication has me stable, or if I have any side effects. Those who know epilepsy know why I had to work hard not to laugh.
When I was asked if I am stable, I turned into an unscripted PSA. I described how one-third of people diagnosed with epilepsy do not have their seizures under control, despite constant efforts with medication. I am one of those people. I have been on more than a dozen medications over the last ten years, hoping they reduce the severity and frequency of my seizures… but you never know. I feel perfectly stable emotionally and physically but I just don’t know when my next seizure is coming which is why I don’t drive or work or travel alone anymore. My seizures have evolved and they are worse now than when I was diagnosed more than 10 years ago and continued working. I’m functioning well enough to work out my prescription medication coverage but I’m also being told it’s going to cost me more than I can afford, fighting for my rights in this broken system.
I often cry after these rare calls. I hold it together and speak politely, calmly and patiently but then I hang up and cry because I have to. I miss my independence, I miss my driver’s license, I miss my career and most of all I miss my children. But I will NOT miss a dose of my medication and I will do everything I can to make sure others don’t have to, either.
Seize the Day with Sarah 