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The Logistical Hurdles of Controlled Substances

We had a frustrating experience yesterday with trying to receive one of Maggie’s medications. Because of seizure increases, Maggie is back on Keppra, at least until our December check-in with neurology when we can reevaluate what Maggie’s seizure frequency and determine what changes, if any, should be made. I’m disappointed that after weaning, we have to go back, but if she needs the medication, so be it. Reducing seizure frequency is necessary for Maggie to have any cognitive growth and even though the keto diet has helped tremendously, she still needs to take her medication to obtain seizure reductions.

Two of Maggie’s medicines are considered “controlled substances,” meaning they are not easily available at my local pharmacy. Two of Maggie’s medications, specifically Clobazam and Epidiolex (pharmaceutical CBD), have to be ordered from two separate specialty pharmacies.

I ordered refills of Clobazam on Monday of last week, which is ample time. I should have received it by Friday (best case) or Tuesday (worst case). Instead, it hasn’t come. I’ve been on the phone with the company every day this week. On Monday, they assured me it should arrive by Tuesday. On Tuesday, they assured me it should arrive by end of the day Tuesday or maybe Wednesday. On Wednesday, yesterday, Maggie wouldn’t have enough medication for a complete dose. When I talked to this company, they said, “Oh, I apologize! We shipped it out yesterday. We apologize for the delays in processing and shipping. Oh, you’re out of medication? Well, I guess you better call the doctor. Sorry!” The lack of concern, the lack of correct information (specifically them confusing the date of shipping versus the date of delivery), the fact that Maggie’s file is flagged priority overnight, yet this happened is infuriating. When are we to receive it? Friday, hopefully. I could stay mad, but I needed to focus on solutions.

The problem: We don’t have enough of one of Maggie’s medication for that evening’s dose; The solution: Find it within the next few hours.

Maggie doesn’t miss her medication doses at all. I am neurotically strict and organized about all things Maggie including medication timing, seizure frequency, ketone levels, keto meal plans, food ratios, and even mood/energy levels.

Of course, I reach out to her neurologist. He sent the prescription to the local pharmacy who of course told me they don’t carry it. I knew this already because we went through this before when we first moved to Maryland and needed to find new pharmacies. They called several other local pharmacies, yes all the big names. They did not carry the liquid suspension. They could offer the 10 mg tablet in its place, but the neurologist would need to resubmit the prescription noting that. Another problem with this option is our insurance will only cover name brands when a generic is not available, as in not on the market. The brand name for this medication is Onfi, the generic is Clobazam, but since the pharmacy did not have the generic in stock, we would need to pay out of pocket for the name brand. They could order it, of course, but it wouldn’t be here until Friday. Her dose would be two tablets in the evening. The price of each tablet: $23 each. We bought six tablets so we’re good until Friday. They can provide more if needed, which we’ll do if the medication isn’t delivered by Friday as expected. We paid $138 for six pills.

We can afford this unexpected expense. The problem isn’t that we can afford it. What if we couldn’t? We have excellent insurance, but what if we didn’t? What happens when Maggie turns of age and she ages out of parent insurance? LGS is an extremely expensive pre-existing condition. What if the Affordable Care Act (A.C.A.), including its protections for pre-existing conditions and extensions for young adults to remain on parent insurance, is no longer available when Maggie grows up. What then?

This leads me to think about the hundreds, thousands, millions of people throughout our country with medical conditions that require medications to simply live. Sure, LGS is extremely rare, but diabetes isn’t. Neither is cancer nor heart disease. There are so many conditions that require medical attention to simply survive. Yeah, there are ways to help yourself with healthy life choices, like food and exercise, but depending on the situation, that doesn’t always work. In Maggie’s case, she didn’t get LGS because she didn’t eat right and exercise. Self-care only goes so far in the face of a serious diagnosis.

Health care, meaning access to health care, should not be limited to those who have the means to pay. Health care should be considered a protected right. This is a serious situation and the future of the A.C.A. is being determined right now on the Supreme Court. If it is overturned, what would that mean for my daughter’s future when she is too old to remain on our insurance and when her pre-existing condition could bar from life-saving medical attention?

I’m not angry about an inconvenient expense (well, I am mad about that because it was avoidable if the pharmacy company did their job when they were supposed to). What upsets me are these questions about affordability and accessibility to health care and their implications for society at large. What if A.C.A. is overturned? What will that mean for so many people today? What will that mean for my daughter as an adult? These are the questions that kept running through my mind last night while I fumed about this unnecessary and avoidable situation.


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