Fighting With Insurance About Lifesaving Medication

Keara Engle avatar

by Keara Engle |

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We are no strangers to our insurance company. While it’s been great in most aspects, we still have to battle it from time to time. Unfortunately, this happens quite often with rare disease patients. 

Due to his infantile-onset Pompe disease, my 3-year-old son, Cayden, has to receive a very pricey medication called Lumizyme (alglucosidase alfa) once a week. The price varies because it’s a weight-based medication. However, it has an annual list price of $630,630 for adults. 

Lumizyme is priced per vial, and Cayden gets 12 vials a week at about $809 each. When you calculate the cost for his weight, it comes out to around $465,984 per year. This price will only increase as his weight increases. 

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We’ve been fortunate to have the option of home infusions. This saves the insurance company some money. The price is much cheaper when compared with the cost of having the infusion at a hospital or infusion center. 

The issue we’ve been facing lately is who covers the cost of the Lumizyme in the hospital. Cayden has been in the hospital for well over a month now due to an illness. And because of our insurance policies, the company hasn’t wanted to cover the infusions while he’s inpatient

This leaves the hospital one option, which is to give him the medication and not get paid for it. We’ve been fortunate enough for them to do this for us, but I know they’re missing out on a lot of money. 

The hospital has asked us to bring in some of our Lumizyme from home, which I’ve done on two occasions. However, I refuse to go through our entire home supply of medication without being able to order more while Cayden is in the hospital.

While home infusions are great, sometimes items are missing from our orders, or the order gets delayed in shipping. I cannot risk using up our home supply, knowing that things might be missing from our order when Cayden is discharged and resumes his home infusions. 

It’s an unfortunate situation, and this has been an ongoing issue since he was admitted into the hospital last month. But as his mother, I must keep fighting and advocating for his needs. This medication keeps Cayden alive! No matter the cost, it is a necessity, and I will do everything in my power to make sure he keeps receiving it.


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.


Anita Perez avatar

Anita Perez

Another great article. You are correct you have to advocate for your child. Insurance companies like Medicaid pay for drug addicts and alcoholics that purposely do damage to their bodies and these poor children who had no choice by being born into this terrible rare disease have to depend on their parents to fight for their rights to get their medications and anything else they need to get paid. I'm sorry but it's not right.

April Jackson avatar

April Jackson

Home infusions are very convenient but as you stated they do have their pros and cons. My daughter is 3 yrs. old and we do weekly home infusions also. Fortunately we haven't had any issues with our insurance and pray that we don't. As parents/caregivers things are already stressful enough worry about your child's well-being we don't need any added stress.


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