The Problem: Stroke is the third leading cause of death in the United States and the leading cause of adult disability. While experts agree that stroke must be treated as a medical emergency and despite proven preventative therapies, stroke care in the United States has limited acute treatment options, low public awareness and inconsistent response by local health-care delivery systems.
Our Engagement: Stroke experts identified a national stroke registry as a critical need for the stroke care community. The registry would serve as a comprehensive tool for health care professionals to improve rapid-system response, timely and accurate patient assessments, and validate and track key epidemiological factors of stroke. Further, the registry could be used to identify patients for clinical trials and would expand the market for approved acute stroke-care products. With the congressional session nearing its close as Congress departed for home to campaign for re-election, high-level champions were required to secure funding amidst last-minute budget decisions.
Our Action: We worked with leaders in the stroke community, and unlike earlier attempts by others, were able to build a consensus on key issues related to the registry and the lobbying strategy. In less than two weeks, leaders in the stroke community were identified, developed a registry methodology; determined funding necessary for a stroke registry pilot project; identified the agency to house the registry; and educated key congressional staff on the benefits and importance of a national stroke registry.
We counseled a team of lobbyists, developed the educational materials for their use and coordinated all stroke community communications. The efforts were successful, and $4.5 million was budgeted in 2001 for The National Paul Coverdell Acute Stroke Registry.
Funding has continued since 2001 and the studies have demonstrated improved care for patients.