Heavy Healthcare Use Precedes Start of Acthar Injection for Patients With Rare Infantile Spasms

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Infantile spasms are hard to diagnose, which can lead to treatment delays, according to the study authors.

Children under age 2 with a rare disorder that causes spasms have frequent doctors’ visits and other healthcare system contacts in the months before they are prescribed an injectable treatment for the condition, according to results presented this week at the American Epilepsy Society annual meeting in Washington, DC.

The delay in treatment for infantile spasms, also known as West syndrome, could stem from many factors; the rare condition can be difficult for physicians to diagnose. But the consequences for infants and children are real, according to Tunde Otulana, MD, chief medical officer at Mallinckrodt Pharmaceuticals, maker of repository corticotropin injection, sold as HP Acthar Gel. Mallinckrodt sponsored the study.

“The analysis showed a substantial healthcare burden among all patients with infantile spasms, prior to initiation of HP Acthar Gel therapy, suggesting a delay in diagnosis or the possible presence of complex seizure types, as well as a delay in receipt of appropriate therapy,” Otulana said. “Children who develop infantile spasms are at great risk for seizures, autism spectrum disorders, and developmental delays. Therefore, gaining insight into real-world treatment patterns leading up to the use of approved therapy is critical.”


The study looked at healthcare utilization in the 90 days prior to receiving a prescription for the Acthar injection, based on Truven MarketScan claims data from January 1, 2007, to December 31, 2015. The data covered 462 patients, including 54% who received Acthar first.

Among all patients with infantile spasms, researchers developed healthcare resource utilization mean for various types of services received in the 90 days prior to being prescribed the injection:

  • 11.4 outpatient care visits
  • 10.0 non-specialist healthcare provider visits
  • 2.5 specialist visits
  • 1 inpatient hospital stay
  • 0.4 emergency room visit
  • 4.2 medications dispensed from the pharmacy

Of the medications dispensed, the most common were antiepileptic drugs, received by 38.3% of patients.

The study found that healthcare use tended to rise during the 3 months preceding the Acthar prescription, peaking a month prior. Patients who received Acthar first used less healthcare than the other patients, but they still used a lot in the 90 days before receiving the therapy. The biggest difference between the 2 groups was the drop in the number of prescriptions for the group that received Acthar first. On average, these patients had:

  • 9.5 outpatient care visits
  • 8.4 non-specialist healthcare provider visits
  • 1.9 specialist visits
  • 0.8 inpatient hospital stays
  • 0.3 emergency room visits
  • 1.9 prescription medications

Laura Gold, PhD, the study’s primary investigator, said the data show the effects of delays in diagnosing infantile spasms. “These findings underscore the considerable healthcare burden placed on patients with infantile spasms, their caregivers, and healthcare systems.”


Gold LS, Nazareth T, Yu TC, Fry KR, Hansen RN. Medication utilization patterns prior to use of repository corticotropin injection in patients with infantile spasms. Presented at the American Epilepsy Society; December 1-5, 2017; Washington, DC. Poster 3.279.