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.
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