How Rising Drug Costs Affected a Family Living with Infantile Spasms

The Foltz family relates to a number of usual, happy family evenings. Some of them, however, include unnerving moments in which their son, Trevor, experienced multiple seizures. At first they didn’t know what to make of it. Some time later, doctors diagnosed Trevor with infantile spasms. The family canceled various plans to take care of their son. It was pure heartache. Worlds seemed shattered. Perhaps most disturbing of all was the ever increasing cost of medication. Their story shows how a treatment grew from a cost of $40 to nearly $40,000. Keep reading to learn more, or follow the original story at CNN for additional information.


Trevor’s doctors knew how to help him. That much was fortunate. They prescribed a drug known as Acthar. When Trevor was born, a vial of Acthar cost $1,600. At the time of his diagnosis, the same quantity cost upwards of $23,000.

The Foltz family began a battle with their insurance company. Trying to find coverage for Trevor’s treatment was taking days at a time. Finally, insurers agreed to cover Acthar for Trevor. The cost of treatment totaled about $125,000.

The important thing though was that the treatment worked. Acthar stopped Trevor’s seizures.

A year later, however, the seizures returned. Trevor would need another round of Acthar. The Foltzes insurance didn’t want to deal with another $125,000 expenditure.

Trevor’s father, Johnathan, describes the experience as drugmakers taking advantage of patients. It’s backwards, he explains. Everything seems to come from the top down and his family seemed to be at the bottom. “It feels like we’re pawns,” Johnathan explains.

Coffee Makers and Sports Cars

Acthar first came on the scene in the 1930s. In 2000 it was valued around $40 per vial. This puts the cost of Acthar about equivalent with something a person would use to brew coffee. By 2018, Acthar had jumped in price to $39,000. Some fully loaded cars can be had for less than that. With most patients requiring multiple vials for treatment, the costs quickly pile up.

When all things were accounted for, this cost hike would eventually lead to a substantial government settlement. $100 million would be settled between the government and those responsible for Acthar. Medicare alone spent around $2 billion on the drug for seniors.

Meanwhile, some doctors began to consider an alternative. Prednisolone costs roughly $20 per dose. The catch, however, is that it has not received approval by the US FDA. It is also, according to some clinical trials, less likely to be effective.

Telling Trevor’s Story

Trevor was one of the first children to be affected by the price hike of Acthar. As a result, and due to his mother’s blog, the family became part of a special congressional panel on the issue of drug prices. Danielle, Trevor’s mom, became the star witness for the Joint Economic Committee. Despite all of this, Acthar’s manufacturer continued to claim it was acting ethically, and that prices were raised to keep the company afloat. Danielle felt as if she had spoken into a void.

Somehow, despite all of this, the price of Acthar only continued to increase. The lawsuits, however, continued.

Trevor underwent brain surgery when the drug ceased to be effective for him. Nearly the entire left hemisphere of his brain was removed to help prevent seizures. Consequently, Trevor lives with a number of speech and cognitive difficulties. Last summer, a doctor recommended further brain surgery. Trevor would lose his ability to read and he’d likely never be able to move his right arm, leg, or fingers.

The Foltz family finds themselves unable to wrestle with such a decision. They are still able to enjoy life with their son even dealing with the seizures. Every Saturday they take Trevor out to the coast where they live in New England. These fun, peaceful moments are the joy they all share.

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