My daughter lives with chronic migraines headaches. Mostly, they're under control. But over the past few months, every weather change has put her to bed. It made us want to re-evaluate our options. And we changed insurance companies, so we also wanted to touch base with our new doctor and bring them up to speed with our unique situation.
The pediatrician seemed nice, albeit eager to provide a prescription. Since that's what we were looking for, we let our qestions continue to hang in the air and headed for the pharmacy. With the misguided expectation that our questions regarding the medication would be answered there.
The pharmacy was busy. We waited in line for an hour and when I asked for more information, the pharmacy technician looked like she wanted to cry. I offered to return at a later time, and asked when they were least busy.
At her suggestion, I returned in the morning. Twice. This was only a mild inconvenience. After all, I know we have special needs. We will need more time than the "average" customer. So, it's common courtesy to return when there are fewer other customers around and the personnel are free to consult their computers and start problem solving with you. If I was willing to wait until a more opportune time, I thought they would be more apt to be helpful.
When I returned, I asked about blue dye and lactose. 2 hours later (and several assurances of "I'm sorry for the wait, it really will only be about 5 more minutes) I was told the suggested medication was lactose free and the pharmacist needed to talk to me. A half hour after that, I saw the pharmacist.
She handed me the medication and said "There's no problem." So I affirmed that there was no dye or lactose. "There's no lactose," she said. What about dye?
She rolled her eyes. She conceded that there was a small amount but that I should just deal with it.
I explained that this was a migraine medication and that blue dye triggers migraines in my daughter. I didn't want to risk doubling her pain. The pharmacist just stared. I explained that she'd reacted to blue dye in medications before. The pharmacist shook her head and said it wasn't a problem this time.
I asked if there was a different option. Perhaps a different manufacturer. "We don't do that." I was told. "Could I get a paper prescription and go elsewhere?" No, they 'don't work that way'.
So then I asked what my options were. "You have no options," she told me. "You take the medicine."
I'm not paying for medication that will make my daughter worse.
"We'll bill you either way," she said with a shrug.
And they have. Whether or not I pay for medication we can't use and didn't accept remains to be seen. (I vote no, and I'm pretty persistent.) Currently they are looking into it, and will call me back.
Meanwhile, we were referred to a migraine class that helps individuals identify triggers (which I rudely turned down. I regret my attitude, although I still don't feel a pressing need for the class unless it helps us navigate the pharmacy better.) And then a neurologist. Who is now the one dealing with pharmacy.
4 weeks later, we have no word on whether or not the pharmacy is capable of procuring safe, affordable abortive (taken only at onset) pain medication for a nearly 12 year old who can't tolerate a clinically insignificant ingredient used to color a tablet.
Statistically speaking, dye reactions or allergies are rare. Insignificant. Dye is used to change the appearance of medication, food, vitamins, even toothpaste. Blue, of all colors, is even reputed to be unappetizing. Blue plates encourage smaller portions. Blue kitchens reduce snacking urges. Blue is a rare color found in nature (and what's the last really-blue fruit or veggie you ate? Even blueberries are more purple than blue.) And yet, it's apparently a vital component in medications.
Which makes us statistically insignificant. The drug manufacturers dismiss us as statistical anomalies, just numbers on papers, and certain members of the medical community do as well. But I'm still sitting here wondering what will happen when it's something serious? What if she needed an antibiotic? Will we end up having to go the intravenous route because they can't get their act together?
What about me? (selfish as that sounds) I have a corn allergy. The last time I needed an antibiotic for a kidney infection, it took nearly a week to get compounded. It needed to get compounded. What's the protocol for that in a pharmaceutical setting that doesn't recognize inactive ingredients as allergens?
Statistically, an individual is not likely to react adversely to dyes in medication. Or corn derivatives. But we do. And we deserve access to safe, affordable options. Even if the pharmacist does find that our prescriptions are the one in a million that require forethought and attention.
1 comment:
That is an absolute shame about the pharmacist and I certainly hope you have other pharmacy options. Then again, I doubt you do. There aren't compounding pharmacies on every corner.
I hope it gets easier for your daughter... and you.
Please stop by my corn allergy blog if you get a chance. I would love to get know "others in the community." I do feel there is a strength in numbers in the allergy community, we just need to keep talking and blogging, and be as vocal as we can.
~ Sharon
Live Corn Free
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