Position Statement on Immediate Access to Accepted Treatments for Infantile Spasms

Adopted: March 20, 2018
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Endorsement
This position statement is endorsed by the following organizations:
Association of Child Neurology Nurses, Dup15q Alliance, Epilepsy Foundation, Child Neurology Foundation, Citizens United for Research in Epilepsy (CURE), Danny Did Foundation, Lennox Gastaut Syndrome Foundation, Mickie’s Miracles, Seizure Tracker, Tuberous Sclerosis Alliance

Infantile spasms is a specific seizure type that is commonly associated with a severe epileptic encephalopathy that frequently leads to permanent, irreversible developmental and intellectual impairment. Early recognition and prompt appropriate treatment are mandatory and may optimize outcomes in some patients.

Treatment of infantile spasms has been evaluated in several multicenter national studies, consensus guidelines and evidence-based reviews identifying appropriate and effective treatments that can be used as standard therapy. These studies and others highlight the importance of early treatment and provide evidence of worse developmental and intellectual outcome that derive from treatment delays.

Epilepsy specialists agree that infantile spasms requires urgent medical attention, necessitating the use of treatments to achieve complete and rapid resolution of clinical spasms and associated EEG changes. Children with infantile spasms must have prompt and continued access to, including insurance coverage for, all accepted treatments of infantile spasms. We are concerned that the recent rising costs and changes in insurance coverage and approval processes may limit, delay, or interrupt access to accepted treatments in some children with infantile spasms with consequent devastating impact on development and seizure control and long-term increased health care costs.  

It is the position of the American Epilepsy Society that early treatment of infantile spasms is an urgent and critical matter, and patients should have immediate and continued access to accepted treatments when clinical criteria for infantile spasms has been met.

References

  1. Knupp KG, Coryell J, Nickels KC et al. Response to treatment in a prospective national infantile spasms cohort. Ann Neurol 2016; 79: 475-484.
  2. Mackay MT, Weiss SK, Adams-Webber T et al. Practice parameter: medical treatment of infantile spasms: report of the American Academy of Neurology and the Child Neurology Society. Neurology 2004; 62: 1668-1681.
  3. Go CY, Mackay MT, Weiss SK et al. Evidence-based guideline update: medical treatment of infantile spasms. Report of the Guideline Development Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society. Neurology 2012; 78: 1974-1980.
  4. Pellock JM, Hrachovy R, Shinnar S et al. Infantile spasms: a U.S. consensus report. Epilepsia 2010; 51: 2175-2189.
  5. O'Callaghan FJ, Lux AL, Darke K et al. The effect of lead time to treatment and of age of onset on developmental outcome at 4 years in infantile spasms: evidence from the United Kingdom Infantile Spasms Study. Epilepsia 2011; 52: 1359-1364.
  6. Primec ZR, Stare J, Neubauer D. The risk of lower mental outcome in infantile spasms increases after three weeks of hypsarrhythmia duration. Epilepsia 2006; 47: 2202-2205.



About the American Epilepsy Society

The American Epilepsy Society is a medical and scientific society whose members are engaged in research and clinical care for people with epilepsy. For more than 75 years, AES has provided a dynamic global forum where professionals from academia, private practice, not-for-profit, government and industry can learn, share and grow.