Education and Advocacy: A Winning Combination

The Epilepsy Foundation of Northeastern New York, which achieved Epilepsy Foundation Affiliate Standards of Excellence in December 2008, recently held their annual legislative breakfast and epilepsy awareness day at the State Capitol in Albany.  More than 40 advocates travelled to Albany from throughout the affiliate's service area to educate legislators about epilepsy and shared their personal stories.

The purpose of the day was two-fold.  The Epilepsy Foundation of Northeastern New York was advocating for the passage of Assembly Bill A03528, which prohibits a pharmacist from substituting one manufacturer's formulation of an antiepileptic drug for another without the informed consent of the prescriber and the patient.  In addition, consumers from the Foundation were there to educate their elected officials about epilepsy and the effect that epilepsy has on their lives.

Throughout the day, meetings were held in sixteen different offices.  Elected officials received clear and concise information about the importance of Bill A03528.  Many were surprised to hear stories from their own constituents regarding breakthrough seizures that resulted when a formulation of their customary medication was changed, after long periods of seizure control.  The meetings resulted in a greater understanding of the potential for a seizure to be life-threatening, and how one episode can endanger not only the individual but others, particularly if they occur without warning, while the individual is engaged in the various activities of daily living.

As a result of these meetings, several assembly members signed on as multi-sponsors.  Additional assembly members informed us that they will vote in favor of the bill when it reaches the floor.  Recently, we learned that Senator Hannon, former Chair of the Senate Health Committee, has agreed to sponsor the bill in the Senate.  Many senators also expressed support for this bill during our visits.  We are hopeful that this bill will pass in the Assembly and Senate before the end of session.

Thank you to all that participated!