The hassles when medicine delivery to our home hits a snag

We rely on getting our Nexviazyme for enzyme replacement therapy on time

Keara Engle avatar

by Keara Engle |

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My 5-year-old son, Cayden, is no stranger to enzyme replacement infusions. He’s been getting them on either a weekly or biweekly basis since he was only 4 weeks old. It’s currently the only treatment option for Pompe disease, the rare genetic disease he was born with.

Fortunately, Cayden has received his infusions at home since he was about 18 months old. Before this, we had to make a 2.5-hour drive to an area children’s hospital for him to receive them. While I’m thankful we were given the option to do home infusions, even they can be a bit of a hassle sometimes.

As part of his home infusions, we’re connected to a specialty pharmacy that’s in charge of shipping the supplies and the medication, Nexviazyme (avalglucosidase alfa), to our house each month. Usually, there’s no problem getting the medication delivered, but I’ve had a few incidents when we ran into some trouble.

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A few months ago, for example, we had a delay. The medicine was supposed to be delivered by noon the day of the infusion, but 12 o’clock came and went with no medication in sight. After making a few phone calls, I learned there was a shipping delay because of a snowstorm down south, which was preventing the medication from reaching us in Pennsylvania. We had to cancel the infusion and reschedule it for a few days later.

While it wasn’t a huge deal, it was still a bit irritating. I hate to reschedule infusions unless it’s absolutely necessary because it messes up our routine. In this case, however, I was aware that the issue was out of everyone’s control. Inclement weather is just something that occurs, whether or not you’re expecting an important package.

More recently, we had a shipment scheduled as usual, which for us means delivery happens between 9 a.m. and noon — normally closer to the end of that time frame. That wasn’t the case with this last delivery, however.

They decided to switch things up on us and attempted to deliver the package at 9:08 a.m., when I was dropping Cayden off at preschool. The school is about a five-minute drive from our house, so I’d missed the delivery by just a few minutes. That was irritating, too.

I called the delivery service, which said it’d return with the package the next day. While this wasn’t a big deal because it’s still pretty chilly here, it would’ve been a problem if it’d been summer. The medication has to remain cold and needs to be refrigerated immediately after it enters the house. The pharmacy does send it in a Styrofoam cooler that has ice packs, but by the time it reached us, the packs had melted. Thankfully, they were still cold enough.

If this late delivery had been on a hot summer day and the ice packs melted and warm, all of the medication for the month would’ve been unusable. Nexviazyme is way too expensive to go to waste like that.

Hopefully, we won’t run into any more issues with the medication deliveries, at least not anytime soon. I’m pretty used to a hectic life by now, but that doesn’t mean that I want to spend time stressing over something that should be fairly simple.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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