Erica and Edward Mumm said their one-year-old son Christian, needs the medication to control his severe seizure condition that was caused by a spontaneous gene mutation.
The company announced recently they will discontinue making the drug because of a lack of demand for it. The family has reached out to the company asking them to allow the medication to remain available for them under the terms of “compassionate use.”
FOX61 followed up on that request with GSK and received the following response:
“GSK plans to cease manufacturing and supply of Retigabine/Ezogabine, which is commercialized as Trobalt/Potiga, in mid-2017. Currently, as few as 1,500 patients with epilepsy are treated with this medicine globally, with numbers continuing to decline. GSK has informed key regulators and is in the process of informing healthcare professionals of its decision, in order to give them approximately a year to transition any patients currently receiving Retigabine to alternative treatment, where this is required. As with any medicine, it is very important that patients do not stop taking their Antiepileptic medication without first speaking to their physician.”
"Potiga is not approved in the pediatric population. In addition, there is currently an FDA-imposed hold for pediatric studies with Potiga due to pre-clinical data and the known safety profile of Potiga in adults. GSK has neither sufficient evidence of benefit, nor information regarding the safe use of Potiga in patients under 18 years of age, in order to support its use KCNQ2 Encephalopathy. Since Potiga is not approved in the pediatric population, it will not be made available on 'compassionate use' terms for this population."
The company also said they have given health care professionals nearly a year to transition patients who are using the medication onto a different treatment.
The Mumm family says they have tried alternative medications for their young son, but they are not as effective for his condition and leave him sedate, inhibiting his development and quality of life.
"Fighting for him is so important because we've seen what this drug can do for him and keep him in a stable place and we’ve seen we've also seen when you take the drug away how difficult his life becomes," Erica Mumm said.