FDA Drug Shortages and Supply Chain Updates

Updated April 9, 2020

MIDAZOLAM SHORTAGE IN THE UNITED STATES: As you may have heard reported in the news, some hospitals are reporting a shortage of generic midazolam that is being used with ventilator treatment. The Dravet Syndrome Foundation reached out to UCB, which confirmed this issue does not impact their product and there is no shortage of NAYZILAM (nasal midazolam). The shortage is not related to the midazolam used in NAYZILAM. UCB remains very confident in their supply chain and, in fact, they restocked the national supply of NAYZILAM last week.

Here are some additional resources that may help patients:

Updated April 1, 2020

The Congressional COVID-19 Relief and Support Package includes $80 million for the Food and Drug Administration to continue efforts related to shortages of critical medicines, enforcement work on counterfeit and misbranded products, emergency use authorizations and pre and post market work on medical countermeasures, therapies, vaccines, and research.

Updated March 26, 2020

The TSC Alliance has learned some individuals and families are experiencing delivery delays in receiving Afinitor® from Briova/Optum Specialty Pharmacy.  Please know we are working behind the scenes to help remedy this issue.  If you are experiencing these challenges and utilize Afinitrac, contact their Patient Support Line at 888-669-6682 (Monday to Friday 8:30 a.m. to 5 p.m. ET) to get help navigating any delivery delays.

Updated March 25, 2020

The TSC Alliance is not aware of any current seizure medication shortages caused by COVID-19.  Refer to the FDA Drug Shortage website for current information.