Coalition Development: PBA Coalition
“Pseudobulbar Affect Voices (PBA Voices) is a group of patient, provider, and health care advocacy organizations representing populations that live with PBA and provider organizations that treat it. Collectively, our goals are to help those living with the condition, as well as their health care providers and caregivers, and to build awareness to better diagnose, track, and treat the disease.”
The PBA Coalition was a contracted partnership between the Brain Injury Association of America and Avanir Pharmaceuticals to provide access to resources for patients, caregivers, and clinicians on PBA, as well as to bolster access to care legislation and rule making throughout the country.
As the Coalition Director, I collected patient and caregiver stories to share with agency personnel in seven states, primarily Texas and California, testified before three pharmaceutical review boards, and ultimately utilized the coalition and its partners to deliver legislation improving access to neurological medication in three states - Texas, New Mexico, and California.
The coalition also resulted in the Texas Neurological Access Coalition, which will expand on the legislative successes in 2019 during the 2021 Texas Legislative Session.