The Example of Epilepsy

In 1994, Congress established a program to address epilepsy at the Centers for
Disease Control and Prevention. Funds for this program have increased over
time. With increased funding comes the possibility that CDC could support
state-based epilepsy programs. However, there is great uncertainty about the
role of state health departments regarding epilepsy or other lower prevalence
chronic conditions. Thus, the purpose of this report is to assist state health
departments and other interested organizations in identifying and understanding
the role of public health in addressing epilepsy.

The Association of State and Territorial Chronic Disease Program Directors
sought input from key informants to create a shared awareness of the issues,
determine the relative importance and feasibility of addressing these issues
through public health, and foster mutual understanding among states, advocacy
groups and federal health agencies. A concept mapping process was
used to gather, aggregate, confirm and integrate the knowledge and opinions
of key stakeholders regarding the role of public health in addressing epilepsy.
Ideas generated by stakeholders suggested that states approach epilepsy in
a coordinated and comprehensive manner similar to that used for other public
health chronic disease prevention and control programs. Recommended
epilepsy program areas included: assessment, epidemiology and surveillance;
partnerships; state plans; intervention; and evaluation. The state health
department was seen as quite capable of carrying out activities in these areas,
and specific action steps were recommended for each.

State health departments were not seen as fulfilling important leadership or
program management roles regarding epilepsy. This may be because other
entities, such as the Epilepsy Foundation, are recognized as the lead organization, or it may be because public health agencies have other priorities
demanding greater attention.

State health departments are not currently very involved in addressing
epilepsy or other lower prevalence chronic conditions. This report presents a
range of recommended activities through which state health departments
could become more involved with these issues, should they choose to develop
programs to address epilepsy and should funding for such programs increase
or become available through federal, state, or other sources.