Anatomy of a 97,000% drug price hike

June 30, 2018

Story by Wayne Drash, CNN
Photographs by Kayana Szymczak for CNN

Updated 3:15 PM ET, Fri June 29, 2018

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Newport, Rhode Island (CNN)Trevor Foltz splashes in the pool in his grandparents’ backyard. His brother and sister join in the fun, as does their father.

Trevor plays with his brother and sister, Toby and Bristel, in the swimming pool at their grandparents house. The family swims together every weekend in the summer and uses the time together to bond.

A kitchen drawer in the family home is full of syringes, next to spoons and sippy cups.

Trevor takes an array of medication three times a day to help minimize the severity and frequency of his seizures.

Danielle Foltz testified before Congress in 2008 about Acthars price hike. Despite her testimony, the drug has continued to climb from $23,000 to nearly $39,000 today. The commonly quoted price of Acthar in 2007 is just over $23,000, but a receipt from Trevors first vial shows that the familys insurance was quoted a price of $30,543.56. Even with the adjusted discount on the receipt, the price was $26,177.62 a vial. CNN blurred Trevors medical information to protect his privacy. The commonly quoted price of Acthar in 2007 is just over $23,000, but a receipt from Trevors first vial shows that the familys insurance was quoted a price of $30,543.56. Even with the adjusted discount on the receipt, the price was $26,177.62 a vial. CNN blurred Trevors medical information to protect his privacy. Jonathan Foltz says he feels that the pharmaceutical company used children like Trevor as pawns to make money. quot;It became a boon for them; for us, not so much.quot; The family tries to provide Trevor with as quot;normalquot; a life as possible. Here, Trevor visits donkeys on a family outing at a nearby farm. Danielle Foltz says she constantly worries that Trevor will die from a seizure, but she chooses to celebrate every day hes alive. The family yearbook captures the Foltzes trip to Washington when Danielle testified on Capitol Hill about Acthars price increase. quot;Those days following Trevors diagnosis, for our family, were the most emotionally dark that weve lived through,quot; she said. Danielle holds Trevor on the family stoop. The family agreed to speak with CNN 10 years after her testimony because the pain is still raw: quot;I wish to God we knew nothing about catastrophic epilepsy and Acthar.quot; Weeks after Danielle testified, Trevor relapsed with his seizures continuing unabated. A decade later, his mother still keeps track of the daily seizures that rock Trevors world. Trevor has trouble tolerating loud sounds and makes sure to either wear noise-cancelling headphones or protect his ears with his hands if things get too loud. Bristel carries her brother along a path during a family outing. Despite his seizures, Trevor and his siblings still play and goof around like any other family. At times, Trevor wears a protective helmet to prevent a head injury should he seize and fall. Trevor has an array of speech and processing issues. Despite his disabilities, he still enjoys life, including this visit to a local farmers market. Trevors mother will never forget the day 10 years ago when the boy relapsed. quot;Some heartache transcends language,quot; she says. On Saturdays, Trevor and a medical aide often visit an animal shelter and farmers market to help him socialize and interact with others. Trevors noise-cancelling headphones help keep unexpected noises from sending him into a seizure. Weekend strolls to the beach have become a family routine. It allows them to be whole, away from the stares of the public, should Trevor seize. Trevor and his dad take in the views during a hike in the Sachuest Point Wildlife Refuge in Middletown, Rhode Island.